X had his 5 year well child check up. He is in the 32nd percentile for height (42 inches) and the 65th percentile for weight (43.1 pounds). Who knew this could ever be?! Everything looks good and he is growing well. The tube feeding is working and he is getting nutrients from the formula. Now we just need to get him to eat on his own. His doctor was happy to see where X is at and described X as "a man of action". That is an accurate description.
We held off on vaccinations again. I am too scared to go there again and X continues to be extremely sensitive to everything ( ok, that's an exaggeration, but it feels that way), so I declined. Maybe next year.
N had some good news as well. He does not have Celiac and it doesn't look like he has any food allergies. (Can you hear my sigh of relief?). We had N tested a couple weeks ago because of some things I had noticed. It looks like it may be more of a IBS thing. We meet with the allergist next month to talk about his asthma, so I'll see what she thinks.
Hooray for simple and happy doctor appointments.
X continues to have bouts of nausea (I still can't find a pattern), but his eating picked up today (mainly in Christmas cookies and candy canes, but I do not care), so we are decreasing the amount of calories he gets at night by 200. Which means I need to be up in 2 hours to unhook him. We started hooking him up to his pump when he goes to bed instead of shocking his sleeping system by hooking him up at 11:00pm. It makes for interesting nights for us, but has stopped the throwing up at night, which makes it all worth it.
Hopefully he will keep up with the eating part. If he can eventually tolerate 4 blouses of 300 ml a day, we won't need to hook him up at night ( as long as he's eating enough), but even if he doesn't eat enough, he will only need to be hooked up for 2 hours at night. Currently, he is tolerating 3 blouses of 240ml. I get giddy thinking about that. The potential for a full night's sleep is so close.
X's volatility has decreased dramatically. Partly because he is getting his required calories and partly because I remembered to give him his vitamin D the past couple days, in my opinion. I had stopped giving it when X became ill and then spaced it out when he started feeling better.
Well, that's what's happening here. X is still recovering from the cold, but I think he is almost fully recovered, and medically he is looking well. I'm so very grateful for that.
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Monday, December 10, 2012
Saturday, December 8, 2012
Germs
X continues to do okay. We have gone 24 hours without vomiting or nausea, so that is encouraging. It's crazy, because there is no pattern to any of it. I do everything exactly the same, and sometimes he just pukes or needs the bucket because he is so nauseas. The only thing that is consistent with this boy, is that he is inconsistent. I still can't get over the fact this is all from a cold he got on Nov. 21st. His gut is still healing up from that one.
Which makes me hate germs. This time of year is so hard.
I ended up backing out of a commitment I made to watch my friend's children because they have runny noses ( she was kind enough to let me know ahead of time- I can't express how much it means when people do that). I feel horrible and frustrated about that.
Today was supposed to be spent at my Mom and Dad's baking, decorating, and making Christmas crafts with all the kids. I had to cancel that because someone had a fever last night. Boo. Hiss. I didn't let N go because I don't want him catching something and bringing it home. X's stuff have a impact on N and I feel bad about that.
I know X will probably catch something from the store or his homeschool classes, but I can't go somewhere knowing someone is ill. The hand sanitizer is out and we wash hands as soon as we get back from somewhere. I'll need to start asking company to wash their hands right away as well. My Thieves oil diffuser is coming out as well.
I don't remember X getting as ill before the feeding tube. In fact, he has had more illnesses since getting the feeding tube. He was rarely sick before the tube. No one has an answer about that (of course).
We did make the best of today though. We made cut out cookies, Christmas crafts, and added decorations to the house. It felt very Christmasy and there wasn't much whining or bickering. It was a fun and relaxing day.
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Which makes me hate germs. This time of year is so hard.
I ended up backing out of a commitment I made to watch my friend's children because they have runny noses ( she was kind enough to let me know ahead of time- I can't express how much it means when people do that). I feel horrible and frustrated about that.
Today was supposed to be spent at my Mom and Dad's baking, decorating, and making Christmas crafts with all the kids. I had to cancel that because someone had a fever last night. Boo. Hiss. I didn't let N go because I don't want him catching something and bringing it home. X's stuff have a impact on N and I feel bad about that.
I know X will probably catch something from the store or his homeschool classes, but I can't go somewhere knowing someone is ill. The hand sanitizer is out and we wash hands as soon as we get back from somewhere. I'll need to start asking company to wash their hands right away as well. My Thieves oil diffuser is coming out as well.
I don't remember X getting as ill before the feeding tube. In fact, he has had more illnesses since getting the feeding tube. He was rarely sick before the tube. No one has an answer about that (of course).
We did make the best of today though. We made cut out cookies, Christmas crafts, and added decorations to the house. It felt very Christmasy and there wasn't much whining or bickering. It was a fun and relaxing day.
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Wednesday, December 5, 2012
The Good and the Bad
The good news is that I don't think the puke episode is related to X's new antacid. The bad news is that it was my fault. I accidentally hooked up his feeding pump to the wrong tube and gave his small intestines a bolus instead of his tummy ( a bolus is a large amount of formula at a fast rate). I can barely type that out. I feel awful.
I called the GI nurse when I realized what I did and she reassured me he was fine because he wasn't in any pain and he felt fine as soon as the pump was turned off. I probably spiked his insulin for an hour though. I also have a few things to look for, but chances are there won't be any problems.
I can't even begin to describe the horror I felt when I realized what I did. I have his tubes marked in two different places, but I accidentally marked one of them wrong. It makes me really think about how he has a hole in his stomach with a plastic piece sticking out and a large tube running through his small intestines and that gives me the willies and makes me queasy.
We started his night feeding earlier tonight to see how he handles it, because that feeding goes into his intestines. So far, so good. He handled his other feeding this afternoon just fine, but he made sure I had him hooked up to the right tube about three times. Poor guy.
The funny thing is I spent all that time in the morning talking with pharmacists trying to get him back in his old antacid. Oh well. We know that one works and his system doesn't like changes, so that is probably a good thing.
I am so thankful I didn't do permanent damage to his little body. That was my biggest fear. That I had permanently harmed him. I am incredibly thankful for that.
He's Five!
Yesterday we celebrated X's fifth birthday. I can't believe he is five. Time flies! He had a good day and party and is very excited to be five. Five. That's a big milestone. I remember when N turned 5. N turned 10 (double digits!) last month. Two momentous birthdays in a month. Our boys are growing.
X is still struggling with puking. sigh. Sometimes at night, sometimes during the day with a bolus. Sometimes right at the beginning of a bolus and sometimes not until the end. There is no pattern, other than he is following his pattern of inconsistencies. Today the puke is full of acid, like when we were hospitalized in Feb. as soon as the feeding pump is turned off he is fine, running around and normal. It's enough to drive me mad.
Right now I am thinking it's the new antacid. We are going back to the other one and will see if that makes a difference. It has different inactive ingredients than the other one he was on.
I've been on the phone all morning with pharmacists and googling ingredients. I can't stand mornings like that. X is vying for attention, tackling the dog, N has questions, the dog is howling to go out, all why trying to figure out stuff on the phone.
We are going to pick up the new antacid and see if that helps. I'm not even going to think about it not working. Our new pharmacy spent a lot of time seeing if they could order the old stuff from our old pharmacy and they can. Hallelujah!! All of our prescriptions will be at the same place.
Just praying the puking stops. X threw up twice this morning all ready. I had to find a babysitter to take N to the library. I've had to cancel library plans all week because of the puking. I feel bad how all this affects N as well. My heart goes out to both of them.
The good news is that X isn't losing weight, he isn't lethargic, we can get the old antacid back (oh how I'm praying that is the problem) and for the most part he is tolerating his night feed, which means he can get calories. Someday this will all be a faint memory.
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X is still struggling with puking. sigh. Sometimes at night, sometimes during the day with a bolus. Sometimes right at the beginning of a bolus and sometimes not until the end. There is no pattern, other than he is following his pattern of inconsistencies. Today the puke is full of acid, like when we were hospitalized in Feb. as soon as the feeding pump is turned off he is fine, running around and normal. It's enough to drive me mad.
Right now I am thinking it's the new antacid. We are going back to the other one and will see if that makes a difference. It has different inactive ingredients than the other one he was on.
I've been on the phone all morning with pharmacists and googling ingredients. I can't stand mornings like that. X is vying for attention, tackling the dog, N has questions, the dog is howling to go out, all why trying to figure out stuff on the phone.
We are going to pick up the new antacid and see if that helps. I'm not even going to think about it not working. Our new pharmacy spent a lot of time seeing if they could order the old stuff from our old pharmacy and they can. Hallelujah!! All of our prescriptions will be at the same place.
Just praying the puking stops. X threw up twice this morning all ready. I had to find a babysitter to take N to the library. I've had to cancel library plans all week because of the puking. I feel bad how all this affects N as well. My heart goes out to both of them.
The good news is that X isn't losing weight, he isn't lethargic, we can get the old antacid back (oh how I'm praying that is the problem) and for the most part he is tolerating his night feed, which means he can get calories. Someday this will all be a faint memory.
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Saturday, December 1, 2012
It Truly is the Little Things
I haven't been blogging because I've been exhausted and crabby and you wouldn't want to read what's going on in my head ;)
We've gone 24 hours without any vomiting! Can I get a woot woot?! And we all slept in our own beds last night night. I've slept in my bed 2 nights out of the last 11. The couch may have permanent imprints of mine and X's bodies. The puke buckets are strategically placed around the house again. Which to be honest, stinks.
Yesterday was a cranky and tiring day for me. I went to pick up a prescription for X I had called in and when I got there I was told they were out of the med and wouldn't have it until Monday. (They couldn't call?). I was so tired and c r a b b y it took all my strength and prayer not to flip out in the store ( not that I am prone to flipping out, but you know how you can be so tired and just feel crazy?). The boys and I had to go home to call another pharmacy to transfer the prescription (although this pharmacy assured me I wouldn't find it anywhere else)
As I was leaving the store I ran into a friend who gave me a much needed hug and it was exactly what I needed. Isn't it amazing how a simple hug can make such a big difference?
It turned out the other pharmacy could compound X's med, however they said the med had lactose in it, but we had used it in Feb. I wasn't completely comfortable with it, but said we would try it and see how he did. When I picked it up later that night, there was a note on the prescription saying they used a different brand, called the manufacturer and made sure there was no lactose in it. All without me asking. I almost cried. If you don't have a child with severe food allergies, this may not seem like a huge deal, but for us it is.
Today I received an encouraging text out of the blue from a friend. It was exactly what I needed. X's temper has been extremely explosive and he is very volatile and has been since Thanksgiving. There is no warning. He can go from playing happily to all out screaming at the top of his lungs, crying, flailing, etc... This is from lack of calories and nutrition and frustration from throwing up as well as disrupted sleep. It is basically a nightmare. My parenting skills have been less than stellar and patience has been running thin the last couple days. The text came at a moment when I was feeling exceptionally low about everything.
Earlier in the week, while I was on the couch with X at about 2 in the morning, I was feeling sad and lonely and praying about it, when our dog pulled his bed out of his kennel, placed it on the floor next to me and curled up. I love our dog.
Even though things have been hard again, I am extremely thankful for these little things that make a huge difference. I am still looking forward to the day X is done puking and we are sleeping through the night again
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We've gone 24 hours without any vomiting! Can I get a woot woot?! And we all slept in our own beds last night night. I've slept in my bed 2 nights out of the last 11. The couch may have permanent imprints of mine and X's bodies. The puke buckets are strategically placed around the house again. Which to be honest, stinks.
Yesterday was a cranky and tiring day for me. I went to pick up a prescription for X I had called in and when I got there I was told they were out of the med and wouldn't have it until Monday. (They couldn't call?). I was so tired and c r a b b y it took all my strength and prayer not to flip out in the store ( not that I am prone to flipping out, but you know how you can be so tired and just feel crazy?). The boys and I had to go home to call another pharmacy to transfer the prescription (although this pharmacy assured me I wouldn't find it anywhere else)
As I was leaving the store I ran into a friend who gave me a much needed hug and it was exactly what I needed. Isn't it amazing how a simple hug can make such a big difference?
It turned out the other pharmacy could compound X's med, however they said the med had lactose in it, but we had used it in Feb. I wasn't completely comfortable with it, but said we would try it and see how he did. When I picked it up later that night, there was a note on the prescription saying they used a different brand, called the manufacturer and made sure there was no lactose in it. All without me asking. I almost cried. If you don't have a child with severe food allergies, this may not seem like a huge deal, but for us it is.
Today I received an encouraging text out of the blue from a friend. It was exactly what I needed. X's temper has been extremely explosive and he is very volatile and has been since Thanksgiving. There is no warning. He can go from playing happily to all out screaming at the top of his lungs, crying, flailing, etc... This is from lack of calories and nutrition and frustration from throwing up as well as disrupted sleep. It is basically a nightmare. My parenting skills have been less than stellar and patience has been running thin the last couple days. The text came at a moment when I was feeling exceptionally low about everything.
Earlier in the week, while I was on the couch with X at about 2 in the morning, I was feeling sad and lonely and praying about it, when our dog pulled his bed out of his kennel, placed it on the floor next to me and curled up. I love our dog.
Even though things have been hard again, I am extremely thankful for these little things that make a huge difference. I am still looking forward to the day X is done puking and we are sleeping through the night again
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Saturday, November 24, 2012
Still sick
Ugh. X is still sick. And now N is and the hubby. At least I now know that the nausea and throwing up is probably more related to the virus than the feeding tube. N and the hubby aren't eating much and they say their stomachs don't feel all that great.
That is the hard part with X. We don't know if he's throwing up because his motility slowed down, or he isn't tolerating the formula, or he has a stomach bug. At least now I know, so today I am giving him a 24 hour break from his formula. So far he has eaten 3/4 of a Popsicle and drank water. Tonight I'll try formula again. If he can't tolerate it by the end of tomorrow we will need to see the doctor. Hopefully not down in the Cities though. Oh man, I do not want to do that.
X definitely has more energy today though. Of course he isn't hooked up to his feeding tube. Yesterday he perked up after I turned off his feeding tube. I really wish we knew what was going on with him. I feel like we need another opinion, but I don't even know what to ask at this point. We were told he has had all the testing done he could have.
I've been reading Facebook pages related to feeding disorders and it makes me feel like a horrible Mom because I don't know as much as these other Moms do and I haven't flown all around the country to see every specialist. I haven't been researching his stuff as much either. Talk about Mom guilt. It's bad enough struggling with the comparisons regarding house keeping, parenting, etc..., but throw in medical stuff and it takes the guilt to a whole new level. I know this is all in my head and I need to work it out and ask God what He thinks and just rely on what He says, but that isn't easy. At least not for me. Just another area to grow in.
Today we are hanging out with Christmas movies, fuzzy blankets, and Gingerale. X us getting a bit bored, so I will need to start getting creative. Hoping everyone is getting illnesses out of their system before Christmas. And that I get some sleep tonight. Oh, how I miss sleep after just a few days without it.
- x on Thanksgiving. He was so ill. My sis sat with him the whole day, Jack the Dog snuggled up with him and my Mom took care of the puke bucket. I am so thankful we had the meal at our house.
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That is the hard part with X. We don't know if he's throwing up because his motility slowed down, or he isn't tolerating the formula, or he has a stomach bug. At least now I know, so today I am giving him a 24 hour break from his formula. So far he has eaten 3/4 of a Popsicle and drank water. Tonight I'll try formula again. If he can't tolerate it by the end of tomorrow we will need to see the doctor. Hopefully not down in the Cities though. Oh man, I do not want to do that.
X definitely has more energy today though. Of course he isn't hooked up to his feeding tube. Yesterday he perked up after I turned off his feeding tube. I really wish we knew what was going on with him. I feel like we need another opinion, but I don't even know what to ask at this point. We were told he has had all the testing done he could have.
I've been reading Facebook pages related to feeding disorders and it makes me feel like a horrible Mom because I don't know as much as these other Moms do and I haven't flown all around the country to see every specialist. I haven't been researching his stuff as much either. Talk about Mom guilt. It's bad enough struggling with the comparisons regarding house keeping, parenting, etc..., but throw in medical stuff and it takes the guilt to a whole new level. I know this is all in my head and I need to work it out and ask God what He thinks and just rely on what He says, but that isn't easy. At least not for me. Just another area to grow in.
Today we are hanging out with Christmas movies, fuzzy blankets, and Gingerale. X us getting a bit bored, so I will need to start getting creative. Hoping everyone is getting illnesses out of their system before Christmas. And that I get some sleep tonight. Oh, how I miss sleep after just a few days without it.
- x on Thanksgiving. He was so ill. My sis sat with him the whole day, Jack the Dog snuggled up with him and my Mom took care of the puke bucket. I am so thankful we had the meal at our house.
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Friday, November 23, 2012
Thankful and Other Things
I am thankful for many things.
X went 8 weeks without being ill. 8 weeks!
We reached the goal of 4 200ml blouses a day. Each bolus takes only a half hour.
X is hooked up to his feeding pump for only 5 hours at night. I remember when he was hooked up for 20+ hours a day.
X is getting his night feeding at a rate of 100ml/hr. I remember when we couldn't get past 55 ml/hr.
X continues to grow and his growth hormone is much higher than it was 6 months ago, which means he does not have a growth hormone issue.
X is eating 250-350+ calories a day on top of his feedings.
X has extra weight to spare when he does become ill.
X has been blessed with an amazing speech and occupational therapist who have helped X eat. We would not be where we are today without them.
X has slept in his own bed for over a month and I have gotten 6-7 solid hours of sleep consistently for a month. I don't think I've had that kind of sleep for that many nights in a row since before I was pregnant with X.
My Mom emptied out X's puke buckets on Thanksgiving for me.
My sister sat with X all of Thanksgiving while he wasn't feeling well.
My family understands that X cannot eat certain foods and does not try to make him eat (I've recently read horror stories about family members sneaking food the children, trying to force children to eat, etc..)
My family enjoyed our gluten, dairy, egg free Thanksgiving meal.
We have health insurance and it has covered everything X has needed.
My husband is healthy enough to work and works overtime so I can be home with N and X and homeschool.
I have a job that allows me to work casual (sometimes ultra casual) and I love the job. Love it.
And there are hundreds more things to be thankful for.
I have needed to remind myself these things the last couple days. X became ill the night before Thanksgiving. I could tell he was fighting something. Wednesday evening he started throwing up. Boo. He barely has a cold, just some congestion, but nothing that bad. I didn't get to bed until 4:30 Thursday morning (and we hosted Thanksgiving) because X was so miserable. He was on straight pedialyte all Wed night. We tried a bolus Thurs morning because he seemed to be getting better, but he threw up most of that. He had straight pedialyte all day Thursday and Thursday night. He did, however, eat 2 large pieces of turkey and some pumpkin pie. That was amazing. He never eats anything when he is ill. Today he is getting a continuous feed into his j tube for 6 hours. That will be almost 50% of his calories. He has thrown up a few times today and he has very low energy, but he is doing okay. I am sure that once I stop the feeding he will perk up.
I have to admit that it is hard not to freak out. I sometimes feel like my mind and brain are not connecting. I can tell myself that he is doing okay and this won't last forever, etc..., but my body reacts in panic. The thoughts, "it's starting all over again", "we are going back to the hospital", "you wont be getting sleep again", etc..start up again. It is a huge mind game for me to not go there and just stay in the moment, although I am getting better at it.
I also get angry and sad. The questions also start up again. Why won't he eat? Why does he throw up when he has just a little cold? Will we ever know what is going on with him? Will he ever get off the feeding tube? And on and on. I don't ask "Why X?" or "Why us?" because if it wasn't X it would be another child and another family. I do ask "Why children?". I know we are not unique and I'm very aware that there are other families with far greater struggles than we have.
Yesterday was a good day even though I had very little sleep and X was sick. When I got up in the morning I wanted to call off the dinner, but I am glad I didn't. It was a fun and relaxing day.
X was weighed last Friday. He gained 3.4 pounds in 2 weeks. And grew another 1/4 inch. He now weighs 43.8 pounds and is 42 inches tall. I emailed the nutritionist because she was concerned about how quickly he was gaining weight (and yet she still increased the calories he receives with the feeding tube). I haven't heard from her yet, so I decreased the amount of calories X receives to 1300 from 1400 a day. He is getting 4 boluses of 200 ml over a half hour. I would love to be able to give him 4 boluses of 300 ml a day. He would only need 100ml over night. We would probably sleep all through the night and his body would be on a normal schedule.
One incredible thing I've noticed is that X is asking for food when he is due for a bolus. His body is definitely starting to figure out how to be hungry. He is also eating larger quantities of food. I think we have stretched his tummy a bit. Even though seeing X ill is discouraging, I am hopeful.
That's what's going on here. It has been a blissful 8 weeks. Pure bliss. After this little setback I am looking forward to more bliss.
Wednesday, November 7, 2012
Steady Progress
Things have been going well. Today we got X up to 200ml/hr over an hour for all three bolus feeds. Tomorrow we will slowly work on increasing the rate so he eventually gets the 200 ml over half an hour. There is so much math involved in this process, and I completely suck at math, so it's been fun.
However, he is on the feedings at night for just over a little 9 hours now. I remember when he used to be on that thing for 20+ hours a day! Life is good and peaceful at the moment.
The ultimate goal, of course, is for him to be tube free and eating on his own. The goal below that is for him to be getting 800 calories during the day divided over four half hour feedings and 700 calories at night over 7 hours. Then, after a while we will begin decreasing the day feedings by 10% and see if X picks that up orally.
That's where we are at.
He is refluxing a little during the day, but he says it doesn't hurt, so I'm not going to get concerned yet. All of this is such a huge step for X. When we tried this last year, that's when everything went to hell and he basically threw up for 4+ months every time he got a feeding. We had puke buckets in every room of the house along with wet wipes, sippy cups of water, towels and diapers to vent his tube into. We even had a bag we had to bring with us that was packed with puking items. It was like our American Express card. We didn't leave home without it.
Now, all of that stuff is put away. Well, almost. I do have a bucket hidden under X's bed and one in our room. It's an amazing feeling having more freedom with out the puking and a little nerve racking as well. Part of me is just waiting for all of this to go bad, but most of me is really enjoying it.
The other night X woke up upset and when I checked on him his shirt was soaked as well as his bed. I was sure he puked, but he said he didn't, then I was sure his balloon that holds his feeding tube in place Burst and stuff was leaking around that. Turns out it was just a cap that popped off a port. I was completely freaked for a few minutes though. Thankfully, it was nothing.
Our doctor's office called Monday to check on X's energy level because he had lost a pound the week before (but grew half an inch in 2 1/2 weeks). Good grief. X is nothing but energy. That boy is non stop motion and talking and exuberance and noise from the minute he gets up to the minute he passes out at night. I sometimes wonder if he is hyper active. But I do not worry about his energy level. Not at the moment anyway.
So, that's it for now. Things are going well. X is moving along with the feedings and we are increasing things at an incredibly slow rate. We could probably go faster, but if I've learned anything with X, it's that he needs small, slow changes.
Another big event over here is X is sleeping in his own room. Can I get a hallelujah!!! This is h-u-g-e. Momentous! Since Aug 29, 2011 I have been sleeping in X's room or he has been in our bed. It has been over a week since he started sleeping in his own bed. He will wake up to pee and will sometimes be afraid and want me to hum (usually for 15 minutes at 3:30 in the morning), but then he stays in his room. I am actually getting sleep. Beautiful, amazing sleep. And my body is craving more and more of it. I still can't wait until the day my sleep is uninterrupted, but this is the best sleep I've had since before I was pregnant with X. During the pregnancy I had insomnia and restless leg syndrome so I did not sleep. Then, about 2 months after he was born he was so miserable with the eczema, hives, reflux, and allergies, he didn't sleep for more than an hour at a time (and that's being generous) until about a year. After that he didn't sleep for more than a few hours at a time until he was about 2 1/2. I remember almost starting several fires in our kitchen while cooking because I was so out of it and I had too many near misses while driving.
But now, I have energy and can think straight, and function. It is good.
Lots of good stuff happening here and I am taking advantage of the peace ( well, as much peace as I can get with an energetic X ;))
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However, he is on the feedings at night for just over a little 9 hours now. I remember when he used to be on that thing for 20+ hours a day! Life is good and peaceful at the moment.
The ultimate goal, of course, is for him to be tube free and eating on his own. The goal below that is for him to be getting 800 calories during the day divided over four half hour feedings and 700 calories at night over 7 hours. Then, after a while we will begin decreasing the day feedings by 10% and see if X picks that up orally.
That's where we are at.
He is refluxing a little during the day, but he says it doesn't hurt, so I'm not going to get concerned yet. All of this is such a huge step for X. When we tried this last year, that's when everything went to hell and he basically threw up for 4+ months every time he got a feeding. We had puke buckets in every room of the house along with wet wipes, sippy cups of water, towels and diapers to vent his tube into. We even had a bag we had to bring with us that was packed with puking items. It was like our American Express card. We didn't leave home without it.
Now, all of that stuff is put away. Well, almost. I do have a bucket hidden under X's bed and one in our room. It's an amazing feeling having more freedom with out the puking and a little nerve racking as well. Part of me is just waiting for all of this to go bad, but most of me is really enjoying it.
The other night X woke up upset and when I checked on him his shirt was soaked as well as his bed. I was sure he puked, but he said he didn't, then I was sure his balloon that holds his feeding tube in place Burst and stuff was leaking around that. Turns out it was just a cap that popped off a port. I was completely freaked for a few minutes though. Thankfully, it was nothing.
Our doctor's office called Monday to check on X's energy level because he had lost a pound the week before (but grew half an inch in 2 1/2 weeks). Good grief. X is nothing but energy. That boy is non stop motion and talking and exuberance and noise from the minute he gets up to the minute he passes out at night. I sometimes wonder if he is hyper active. But I do not worry about his energy level. Not at the moment anyway.
So, that's it for now. Things are going well. X is moving along with the feedings and we are increasing things at an incredibly slow rate. We could probably go faster, but if I've learned anything with X, it's that he needs small, slow changes.
Another big event over here is X is sleeping in his own room. Can I get a hallelujah!!! This is h-u-g-e. Momentous! Since Aug 29, 2011 I have been sleeping in X's room or he has been in our bed. It has been over a week since he started sleeping in his own bed. He will wake up to pee and will sometimes be afraid and want me to hum (usually for 15 minutes at 3:30 in the morning), but then he stays in his room. I am actually getting sleep. Beautiful, amazing sleep. And my body is craving more and more of it. I still can't wait until the day my sleep is uninterrupted, but this is the best sleep I've had since before I was pregnant with X. During the pregnancy I had insomnia and restless leg syndrome so I did not sleep. Then, about 2 months after he was born he was so miserable with the eczema, hives, reflux, and allergies, he didn't sleep for more than an hour at a time (and that's being generous) until about a year. After that he didn't sleep for more than a few hours at a time until he was about 2 1/2. I remember almost starting several fires in our kitchen while cooking because I was so out of it and I had too many near misses while driving.
But now, I have energy and can think straight, and function. It is good.
Lots of good stuff happening here and I am taking advantage of the peace ( well, as much peace as I can get with an energetic X ;))
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Friday, October 19, 2012
Moving forward
The bolus feeds are continuing to go well. For his last bolus feed today, I increased it to 135 ml/hr for an hour (from 130 ml/hr). That's only an increase of a teaspoon over an hour, but I can tell it's affecting him. He is swallowing a lot and sighing a lot. For him, that usually means his tummy doesn't feel the greatest. It is going to take a long time to get to 200 ml/hr.
I need to talk with our new nutritionist. When we last met, she said that X's weight gain needs to slow down or we will be dealing with the "opposite issue". I took that to mean obesity. At the same time, she also increased his feeding tube calories to 1400 from 1280 when he is eating well, and to 1600 calories when he is eating 100 calories or less. That doesn't make sense to me. I feel like he is going to balloon with these new numbers.
The most recent weight gain of X's happened while he was eating 300-400 calories on top of the 1280 he received through the feeding tube. It seems to me that, X will start decreasing his oral intake, or he will gain a ton of weight in a short amount of time. Yeah, I'll have to email her to find out what range of calories she would like to see him getting between both the feeding tube and oral intake. This is why I almost cried when I heard the nutritionist who has been with us from the beginning was gone.
I have also noticed that X is really not consuming any meat since increasing the calories on the feeding tube. I should also ask her how much protein he is getting now and at what ratio. He typically loves his mea. I suppose there will be an adjustment period with the new nutritionist. I am not known for adjusting well to any changes. This will be another area of personal growth for me I guess. Oh yay.
X is way too active for the feeding button. Good grief. I can't tell you how often I need to clean up stomach content because of leaks. The leaks happen because he doesn't let the feeding tube slow him down. Which is a good thing, but it's messy.
Speaking of stomach content, I was wearing a yellow-green sweatshirt the other day, X looked at me and said, "That is disgusting Mom!". When I asked him what was disgusting, he replied, "Your sweatshirt! It looks like stomach acid!". Nice. He was right though, it was the color of the stuff that he has seen come out of his tubes. I don't think I'll be able to wear that hoodie again.
That's about all that is going on around here. Hopefully we can just s-l-o-w-l-y keep increasing the amount of the blouses and get to where we need to be without any troubles.
- Posted using BlogPress from my iPad
I need to talk with our new nutritionist. When we last met, she said that X's weight gain needs to slow down or we will be dealing with the "opposite issue". I took that to mean obesity. At the same time, she also increased his feeding tube calories to 1400 from 1280 when he is eating well, and to 1600 calories when he is eating 100 calories or less. That doesn't make sense to me. I feel like he is going to balloon with these new numbers.
The most recent weight gain of X's happened while he was eating 300-400 calories on top of the 1280 he received through the feeding tube. It seems to me that, X will start decreasing his oral intake, or he will gain a ton of weight in a short amount of time. Yeah, I'll have to email her to find out what range of calories she would like to see him getting between both the feeding tube and oral intake. This is why I almost cried when I heard the nutritionist who has been with us from the beginning was gone.
I have also noticed that X is really not consuming any meat since increasing the calories on the feeding tube. I should also ask her how much protein he is getting now and at what ratio. He typically loves his mea. I suppose there will be an adjustment period with the new nutritionist. I am not known for adjusting well to any changes. This will be another area of personal growth for me I guess. Oh yay.
X is way too active for the feeding button. Good grief. I can't tell you how often I need to clean up stomach content because of leaks. The leaks happen because he doesn't let the feeding tube slow him down. Which is a good thing, but it's messy.
Speaking of stomach content, I was wearing a yellow-green sweatshirt the other day, X looked at me and said, "That is disgusting Mom!". When I asked him what was disgusting, he replied, "Your sweatshirt! It looks like stomach acid!". Nice. He was right though, it was the color of the stuff that he has seen come out of his tubes. I don't think I'll be able to wear that hoodie again.
That's about all that is going on around here. Hopefully we can just s-l-o-w-l-y keep increasing the amount of the blouses and get to where we need to be without any troubles.
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Thursday, October 18, 2012
Moving Along and Adjusting
We continued with the bolus feeds today. I kept the blouses at 130 ml an hour for an hour. At one point X said he had a tummy ache. It was an hour after one of the bolus feeds had ended. Was it related to the feed? Or just a fluke thing? I really don't know. The only time X ever complains of a tummy ache is when a feeding isn't going well, or when he is ill. He didn't throw up and the tummy ache didn't last long, so whatever the reason, it ended well. It can be so hard to know what to do or what is going on, especially since we don't know the reason X doesn't eat enough.
Thankfully we didn't have any leaks today and I didn't need to try and crawl into his "fortress" to take care of the leaks. That is always a plus. The formula we use reeks. Ugh. I can't stand the smell of it. Neither can X. I look forward to the day X does not need to use this formula. However, I am also grateful he has something to help him grow and be healthy and strong. I just wish it smelled a little better.
I feel like all we are doing all day is hooking X up to his feeding pump and unhooking him from the feeding pump. That is the inconvenient part of the blouses during the day. I think that in 6 months or so we will start decreasing the amount of blouses he receives during the day, in the hopes of triggering hunger.
Today X and N went to homeschool climbing at a local rock climbing facility. It's the first time X has gone. N is on those climbing team, so he's an old pro. When the staff was helping me fit X with a harness, I realized that the waist part of the harness sat right at X's button. sigh I asked if they had anything else and showed them where the button was. They had a full body harness and that worked perfectly. They were extremely helpful.As X is getting bigger and more adventurous, we really need to start thinking ahead about stuff.
This past weekend was another example of that. My nephews were spending the weekend with my parents, and my parents wanted to know if N could also spend the weekend. We were all for that, but I felt bad for X because he was the only one left out and it was because of the feeding tube. I haven't trained anyone on the night time feeds, because there isn't a whole lot of sleeping going on with the feeding pump at night. The formula is only good for 6 hours at a time ( because we have to mix it ourselves) and X needs to pee in the middle of the night because of all the fluid he gets, and for some reason, our feeding pump seems to alarm a lot. I think it's because he moves around in his sleep so much. His tubing gets kinked a lot.
But I digress. So, I felt bad. We decided I would spend one night at my parents' house with X so he could join in. It all worked out, but it breaks my heart that the feeding tube is starting to get in the way more. He's getting old enough where he is able to do things more independently, but not yet old enough to be fully responsible for his feeding tube. I'm sure we'll navigate this season, just like all the other families out there who have already done this. Our GI doctor did give us the okay to skip a feeding so X can spend the night at Nana and Pop's house without Mom. X was pretty pumped when he found out he could skip a feeding. We will just need to get more creative.
Last night X asked me if I would walk up the stairs with him because, "I am still a little scared from getting my button changed Momma. I still think about it and I feel scared. But I'm not scared of upstairs". Now I wonder if we did the right thing by not giving him the Versed. He wouldn't have remembered if he had the Versed. I don't know. He was fine today and didn't mention it, so maybe he's okay.
Today was a good day. Busy, but good. I am working tomorrow, so X will just get continuous feeds tonight, and we'll skip the bolus feeds tomorrow. I'm guessing tomorrow will be a good day too. I get to go to work for a day do something I absolutely love, and the boys get to hang out with a great babysitter whom they love.
- Posted using BlogPress from my iPad
Thankfully we didn't have any leaks today and I didn't need to try and crawl into his "fortress" to take care of the leaks. That is always a plus. The formula we use reeks. Ugh. I can't stand the smell of it. Neither can X. I look forward to the day X does not need to use this formula. However, I am also grateful he has something to help him grow and be healthy and strong. I just wish it smelled a little better.
I feel like all we are doing all day is hooking X up to his feeding pump and unhooking him from the feeding pump. That is the inconvenient part of the blouses during the day. I think that in 6 months or so we will start decreasing the amount of blouses he receives during the day, in the hopes of triggering hunger.
Today X and N went to homeschool climbing at a local rock climbing facility. It's the first time X has gone. N is on those climbing team, so he's an old pro. When the staff was helping me fit X with a harness, I realized that the waist part of the harness sat right at X's button. sigh I asked if they had anything else and showed them where the button was. They had a full body harness and that worked perfectly. They were extremely helpful.As X is getting bigger and more adventurous, we really need to start thinking ahead about stuff.
This past weekend was another example of that. My nephews were spending the weekend with my parents, and my parents wanted to know if N could also spend the weekend. We were all for that, but I felt bad for X because he was the only one left out and it was because of the feeding tube. I haven't trained anyone on the night time feeds, because there isn't a whole lot of sleeping going on with the feeding pump at night. The formula is only good for 6 hours at a time ( because we have to mix it ourselves) and X needs to pee in the middle of the night because of all the fluid he gets, and for some reason, our feeding pump seems to alarm a lot. I think it's because he moves around in his sleep so much. His tubing gets kinked a lot.
But I digress. So, I felt bad. We decided I would spend one night at my parents' house with X so he could join in. It all worked out, but it breaks my heart that the feeding tube is starting to get in the way more. He's getting old enough where he is able to do things more independently, but not yet old enough to be fully responsible for his feeding tube. I'm sure we'll navigate this season, just like all the other families out there who have already done this. Our GI doctor did give us the okay to skip a feeding so X can spend the night at Nana and Pop's house without Mom. X was pretty pumped when he found out he could skip a feeding. We will just need to get more creative.
Last night X asked me if I would walk up the stairs with him because, "I am still a little scared from getting my button changed Momma. I still think about it and I feel scared. But I'm not scared of upstairs". Now I wonder if we did the right thing by not giving him the Versed. He wouldn't have remembered if he had the Versed. I don't know. He was fine today and didn't mention it, so maybe he's okay.
Today was a good day. Busy, but good. I am working tomorrow, so X will just get continuous feeds tonight, and we'll skip the bolus feeds tomorrow. I'm guessing tomorrow will be a good day too. I get to go to work for a day do something I absolutely love, and the boys get to hang out with a great babysitter whom they love.
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Wednesday, October 17, 2012
Moving Slowly and Allergies
The night before X had his gj tube changed, he accidentally drank some of N's regular milk, thinking it was soy milk. X has a severe dairy allergy. He has not had any dairy for 4 years (except for a stay in the hospital this past Feb when the kitchen sent up regular milk for him instead of soy milk). However, we have kept him safe at home and while out and about, except for this past Sun.
I didn't realize N was drinking regular milk. The three of us were sitting at the table and X was eating oatmeal (which is a huge deal) when X grabbed N's glass of milk to take a drink to be funny. N went into panic mode and was yelling "No!! Don't drink it!", and I was all "What's the big deal? You were done drinking it." N yelled, "But it's regular milk!". I reached towards X, but it was too late, he had already taken a drink.
I almost threw up. Poor X started crying "Momma! What's going to happen to me?! I'm scared! Do I need a shot?!" (referring to his Epi-pen) And he turned beat red immediately (an allergic reaction). I told N to find a container for N to throw up in and I ran to get the Benadryl and a syringe to put it in his feeding tube. X was crying and screaming, "I'm scared Momma! I'm scared!", over and over. By the time I had the Benadryl in his tube he started throwing up. Oh, did he throw up. (Did I mention Craig had ran to the store and I was alone? Thankfully he had forgotten the list and had to come home, so he arrived right after X threw up)
X was also telling me that he couldn't swallow his spit (a sign things are swelling). Because he threw up right after I gave him the Benadryl, I gave him some more. I wasn't sure on the dosage, so I guessed and gave him less than what I had previously given him. This time I gave it to him in the j tube (goes into his small intestine). He complained of not being able to swallow his spit for a few more minutes, and then seemed okay. He was red for quite a while, but he fell asleep on the couch with Craig and was fine. I was beginning to seriously think I was going to need to use the Epi-pen. )I had gotten it out, but hid it so X wouldn't see it. I've never had to use it before and that is the first time I've actually thought about using it.
He was exposed to milk in Feb at the hospital and he threw up then and turned bright red, but the reaction didn't seem as severe this time. I think that each time he is exposed like that he will have more severe reactions. Which is scary if that is true. My plan for a stress free, fun evening before his procedure definitely did not happen.
Poor N, he thought it was all his fault that X drank his milk and X was saying it was his own fault because he shouldn't have drank N's milk. It took quite a bit of convincing before N truly believed it wasn't his fault. He came to the conclusion "Mom, I guess it just happened. It's nobody's fault". X, on the other hand quickly jumped to the conclusion that it was my fault. I was happy to take the blame.
Today we started the bolus feedings. The GI doctor wanted us to run 200ml of formula over an hour into X's stomach, the nutritionist suggested 150 ml over an hour, so I started with 100 ml over an hour. That went well, so I upped it to 120 ml over an hour for the second bolus which also went well. I upped the third bolus to 130 ml and that went well. For the fourth bolus I did 130 ml at a rate of 140 ml an hour. X started feeling tired and wanted to lay down about half way into the bolus. He also had dark circles under his eyes. It was near bedtime, so that could have been what was going on, or it could have meant he wasn't tolerating it all that well. That's what would happen with his feeds in Feb when he was hospitalized. He would get that way before the retching started. When the bolus was done he seemed a little perkier, but still had the dark circles. I'm still not sure what was going on. He said his tummy felt fine. I think I'll stick to 130ml an hour tomorrow and stay there for several days before moving up.
One of the benefits of starting the bolus feeds this time of year is that we aren't at the beach all day and we are doing school, so we are home more often. The hard part is that cold and flu season is coming up. If X throws up now, he can throw up formula and lose calories. Hopefully we can keep him healthy. Time to start the extra vitamin C and D.
It is also more work to get these bolus feeds in. There is a lot of timing involved. Today we had a lot of beeping with the feeding pump and lots of leaks. X was so active he often knocked the cover off one of the ports and formula went everywhere. I can't tell you how many times the alarm went off or he leaked formula in his " fortress". He would just slide his little feeding pump backpack out the "door" for me to fix the alarm.
We will definitely need to adjust to this new feeding schedule. I am so grateful that today went well with the feedings though. I was extremely apprehensive about today, because when we tried this last year everything fell apart. X dealt with throwing up and popping issues for at least 4 months. It was awful. But that was last year, and we understand his system a little better, so hopefully this will go better and we can get to the process of weaning him off this tube soon.
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I didn't realize N was drinking regular milk. The three of us were sitting at the table and X was eating oatmeal (which is a huge deal) when X grabbed N's glass of milk to take a drink to be funny. N went into panic mode and was yelling "No!! Don't drink it!", and I was all "What's the big deal? You were done drinking it." N yelled, "But it's regular milk!". I reached towards X, but it was too late, he had already taken a drink.
I almost threw up. Poor X started crying "Momma! What's going to happen to me?! I'm scared! Do I need a shot?!" (referring to his Epi-pen) And he turned beat red immediately (an allergic reaction). I told N to find a container for N to throw up in and I ran to get the Benadryl and a syringe to put it in his feeding tube. X was crying and screaming, "I'm scared Momma! I'm scared!", over and over. By the time I had the Benadryl in his tube he started throwing up. Oh, did he throw up. (Did I mention Craig had ran to the store and I was alone? Thankfully he had forgotten the list and had to come home, so he arrived right after X threw up)
X was also telling me that he couldn't swallow his spit (a sign things are swelling). Because he threw up right after I gave him the Benadryl, I gave him some more. I wasn't sure on the dosage, so I guessed and gave him less than what I had previously given him. This time I gave it to him in the j tube (goes into his small intestine). He complained of not being able to swallow his spit for a few more minutes, and then seemed okay. He was red for quite a while, but he fell asleep on the couch with Craig and was fine. I was beginning to seriously think I was going to need to use the Epi-pen. )I had gotten it out, but hid it so X wouldn't see it. I've never had to use it before and that is the first time I've actually thought about using it.
He was exposed to milk in Feb at the hospital and he threw up then and turned bright red, but the reaction didn't seem as severe this time. I think that each time he is exposed like that he will have more severe reactions. Which is scary if that is true. My plan for a stress free, fun evening before his procedure definitely did not happen.
Poor N, he thought it was all his fault that X drank his milk and X was saying it was his own fault because he shouldn't have drank N's milk. It took quite a bit of convincing before N truly believed it wasn't his fault. He came to the conclusion "Mom, I guess it just happened. It's nobody's fault". X, on the other hand quickly jumped to the conclusion that it was my fault. I was happy to take the blame.
Today we started the bolus feedings. The GI doctor wanted us to run 200ml of formula over an hour into X's stomach, the nutritionist suggested 150 ml over an hour, so I started with 100 ml over an hour. That went well, so I upped it to 120 ml over an hour for the second bolus which also went well. I upped the third bolus to 130 ml and that went well. For the fourth bolus I did 130 ml at a rate of 140 ml an hour. X started feeling tired and wanted to lay down about half way into the bolus. He also had dark circles under his eyes. It was near bedtime, so that could have been what was going on, or it could have meant he wasn't tolerating it all that well. That's what would happen with his feeds in Feb when he was hospitalized. He would get that way before the retching started. When the bolus was done he seemed a little perkier, but still had the dark circles. I'm still not sure what was going on. He said his tummy felt fine. I think I'll stick to 130ml an hour tomorrow and stay there for several days before moving up.
One of the benefits of starting the bolus feeds this time of year is that we aren't at the beach all day and we are doing school, so we are home more often. The hard part is that cold and flu season is coming up. If X throws up now, he can throw up formula and lose calories. Hopefully we can keep him healthy. Time to start the extra vitamin C and D.
It is also more work to get these bolus feeds in. There is a lot of timing involved. Today we had a lot of beeping with the feeding pump and lots of leaks. X was so active he often knocked the cover off one of the ports and formula went everywhere. I can't tell you how many times the alarm went off or he leaked formula in his " fortress". He would just slide his little feeding pump backpack out the "door" for me to fix the alarm.
We will definitely need to adjust to this new feeding schedule. I am so grateful that today went well with the feedings though. I was extremely apprehensive about today, because when we tried this last year everything fell apart. X dealt with throwing up and popping issues for at least 4 months. It was awful. But that was last year, and we understand his system a little better, so hopefully this will go better and we can get to the process of weaning him off this tube soon.
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Monday, October 15, 2012
Changes and Plans
X had his gj tube changed today and it went beautifully. It could not have gone any better. I didn't tell him what was going to happen until we got there. It's hard to know when to tell him what procedure he is going to have. The last time his tube was changed, it was very traumatic and I didn't want him obsessing about it and working himself up. He did ok when we told him at the hospital. Definitely scared, but not hysterical and he was still able to have fun while we waited. The nurses and anesthesiologist really pushed hard for us to give X some Versed. I mean, they really wanted X to have the drug. We really felt X didn't need it, and we almost caved, but we stuck with our initial decision. It was the best decision.
X did amazing. I am so proud of that little guy (well, not so little anymore). It did hurt once during the procedure, and that was heart breaking, but it wasn't awful pain and he whimpered, but didn't scream, and the pain lasted a few seconds. Everyone was impressed with how well he did and one of the nurses who really pushed for the Versed admitted X did better without it. Instead of being tired and loopy after the procedure, he was able to hop off the table and "work the room" as soon as it was done.
The best part of the day was watching X after the procedure talking with the nurses. His chest was puffed out and he was so proud of himself. Then he looked over at me and ran full board and jumped into my arms and just clung to my neck. My heart just about burst. What an amazing boy (in my biased opinion).
N had a hard time. His poor tummy was a wreck from the minute he woke up. Too many memories for him I think. As soon as the procedure was over, he felt fine. its hard to know when to bring N and when to leave him home. He is more anxious when he isn't with us. Thankfully today was an easy day and a good day, so if he comes with us for something else he won't be as nervous. He was able to talk about it, which is good, but it breaks my heart. X's medical stuff has made affected him in a lot of ways. I also feel he is an amazing boy for everything he has gone through with X.
I cannot even begin to describe the feeling of relief I had when the procedure was done. I actually felt physically lighter. It was amazing. I knew I was struggling with anxiety about the whole thing, but I didn't realize how much I was struggling. I am hoping this is just the beginning of better appointments and the beginning of the end of this feeding tube.
We had our follow up appointment with X's GI doctor and nutritionist. We have a new plan. X will get 800 ml of formula for 9 hours at night and 4 blouses of formula during the day. He will get 200 ml of formula over an hour 4x a day. The blouses will go directly into his stomach. This will hopefully help him "get" the hunger-satiety cycle and help him figure out how to eat so we can wean him off the tube. This will also allow X to take a bath without having to be hooked up to his feeding tube. That is a big thing over here. It also means he can play after supper without having to carry around his backpack. Oh the freedom he will have!
The scary part about all of this, is that we tried this last year when he had the ng tube and that is when all hell broke loose. He basically threw up for almost four months. If he starts vomiting regularly we run the risk of X's oral aversions coming back. I am hesitant to try it, but its the best way to wean him off and if things don't go well, then we will know something else is wrong. I am hopeful things will go well, because so many other things are going well for X. We will start the bolus feeds in the morning. I guess we will get an idea how things are going to go then. For now, I am going to bask in the joy of today.
The nutritionist (who is new) was excited to see how X is gaining weight, but wants the weight gain to taper off or we will have an obesity problem. Good grief. For years we have counted the ounces this boy gains and now we may have to worry about the other extreme? I never would have thought we would ever have to worry about that.
So that was our day. It was a good day. I am thankful for that.
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X did amazing. I am so proud of that little guy (well, not so little anymore). It did hurt once during the procedure, and that was heart breaking, but it wasn't awful pain and he whimpered, but didn't scream, and the pain lasted a few seconds. Everyone was impressed with how well he did and one of the nurses who really pushed for the Versed admitted X did better without it. Instead of being tired and loopy after the procedure, he was able to hop off the table and "work the room" as soon as it was done.
The best part of the day was watching X after the procedure talking with the nurses. His chest was puffed out and he was so proud of himself. Then he looked over at me and ran full board and jumped into my arms and just clung to my neck. My heart just about burst. What an amazing boy (in my biased opinion).
N had a hard time. His poor tummy was a wreck from the minute he woke up. Too many memories for him I think. As soon as the procedure was over, he felt fine. its hard to know when to bring N and when to leave him home. He is more anxious when he isn't with us. Thankfully today was an easy day and a good day, so if he comes with us for something else he won't be as nervous. He was able to talk about it, which is good, but it breaks my heart. X's medical stuff has made affected him in a lot of ways. I also feel he is an amazing boy for everything he has gone through with X.
I cannot even begin to describe the feeling of relief I had when the procedure was done. I actually felt physically lighter. It was amazing. I knew I was struggling with anxiety about the whole thing, but I didn't realize how much I was struggling. I am hoping this is just the beginning of better appointments and the beginning of the end of this feeding tube.
We had our follow up appointment with X's GI doctor and nutritionist. We have a new plan. X will get 800 ml of formula for 9 hours at night and 4 blouses of formula during the day. He will get 200 ml of formula over an hour 4x a day. The blouses will go directly into his stomach. This will hopefully help him "get" the hunger-satiety cycle and help him figure out how to eat so we can wean him off the tube. This will also allow X to take a bath without having to be hooked up to his feeding tube. That is a big thing over here. It also means he can play after supper without having to carry around his backpack. Oh the freedom he will have!
The scary part about all of this, is that we tried this last year when he had the ng tube and that is when all hell broke loose. He basically threw up for almost four months. If he starts vomiting regularly we run the risk of X's oral aversions coming back. I am hesitant to try it, but its the best way to wean him off and if things don't go well, then we will know something else is wrong. I am hopeful things will go well, because so many other things are going well for X. We will start the bolus feeds in the morning. I guess we will get an idea how things are going to go then. For now, I am going to bask in the joy of today.
The nutritionist (who is new) was excited to see how X is gaining weight, but wants the weight gain to taper off or we will have an obesity problem. Good grief. For years we have counted the ounces this boy gains and now we may have to worry about the other extreme? I never would have thought we would ever have to worry about that.
So that was our day. It was a good day. I am thankful for that.
- Posted using BlogPress from my iPad
Saturday, September 29, 2012
Peace
Tonight I saw the moon as it was setting and it was beautiful. The sky was a pink/blue and the moon was huge. It truly was a spectacular sight. As I was driving and observing this amazing sight I had an overwhelming sense of peace. I had the thought that if someone could creat something that beautiful, He certainly is big enough to lean on and trust with all of X's unknowns. Maybe that doesn't make a whole lot of sense, but in that moment it was crystal clear. (I still wouldn't mind some inside info as to what's going on with X. You know, like a hand writing something on a wall or even a donkey telling me).
I needed that tonight. Last night X woke up around 3:00am with a wet shirt. Stomach fluid had leaked out from around his button. I checked the amount of water in the balloon that holds the button in place. It was short 1.5 ml. I filled it up and the leak stopped. I know this can happen as the tube gets older, so I am really praying that this tube lasts until Oct. 15.
I've also been reading more up on feeding disorders and feeding tubes. There are so many things that could be wrong with X that are very difficult to diagnose. It's overwhelming and I feel nauseas whenever I am on the sites or pages or blogs. To be honest, I would rather hide my head in the sand than read about these things. X may not have any of these things, but just the mere possibility scares me.
X still isn't eating anything. I think he ate 20 calories today. He did get all of his tube feeding though. It is so frustrating because he gets so cranky. We had to leave our favorite nature park today before we got our hike in because of behaviors and I had to wait until Craig got home before I could run to the store because of behaviors. It's hard to know what to do. I know I still need to parent X, but I also know that 95% of the behaviors today were from not getting enough calories. It's a hard balance to find.
We did up his rate by one ml/hr tonight and he has done fine with it so far. He is up to 90 ml/hr right now. That is pretty amazing for him. Praying and hoping for an uneventful night.
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I needed that tonight. Last night X woke up around 3:00am with a wet shirt. Stomach fluid had leaked out from around his button. I checked the amount of water in the balloon that holds the button in place. It was short 1.5 ml. I filled it up and the leak stopped. I know this can happen as the tube gets older, so I am really praying that this tube lasts until Oct. 15.
I've also been reading more up on feeding disorders and feeding tubes. There are so many things that could be wrong with X that are very difficult to diagnose. It's overwhelming and I feel nauseas whenever I am on the sites or pages or blogs. To be honest, I would rather hide my head in the sand than read about these things. X may not have any of these things, but just the mere possibility scares me.
X still isn't eating anything. I think he ate 20 calories today. He did get all of his tube feeding though. It is so frustrating because he gets so cranky. We had to leave our favorite nature park today before we got our hike in because of behaviors and I had to wait until Craig got home before I could run to the store because of behaviors. It's hard to know what to do. I know I still need to parent X, but I also know that 95% of the behaviors today were from not getting enough calories. It's a hard balance to find.
We did up his rate by one ml/hr tonight and he has done fine with it so far. He is up to 90 ml/hr right now. That is pretty amazing for him. Praying and hoping for an uneventful night.
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Friday, September 28, 2012
Better
X is doing better. He didn't come into our bed last night until 3:00am and he slept peacefully (meaning, I didn't get kicked in the head). The amoxicillin must be taking care of that ear infection. I looked back and he has had 4 ear infections since Feb. We'll definitely make an appt to talk with ENT and talk about tubes. I remember having to do that with our oldest, N, and it was an agonizing decision to make. Not anymore. Getting tubes seems like nothing at this point (if that is what will be recommended).
X still isn't eating much, although he did have a small bowl of cereal and drank the soy milk before bed, that is the most he has eaten in several days. That is all he ate today. I called our nutritionist to see if we can keep X on his feeding tube longer so he can get more calories. He is definitely a bit crankier and has less stamina and needs more than what he gets with the feeding tube alone.
When I called, I found out our nutritionist no longer works at the hospital. Apparently I haven't talked with her since before May. She wasn't comfortable making any recommendations until she talked with the GI doctor because X 's case is "complex". She was most concerned about the amount of protein he gets because they decreased his protein in the spring. She also noted that the notes say they " don't know why decreasing the amount of protein worked". I'm a little concerned because our nutritionist was with us from the beginning and she understood everything and she was just plain great. Maybe having a new pair of eyes will help.
There are still so many unknowns with X. No one knows why he won't eat, why he couldn't tolerate the stomach bolus feeds, why he gets so ill with any little bug, and why less protein helps him. It's scary and overwhelming when I think about all the unknowns. Its easier to ignore it all when he is healthy and doing well. We really should start pushing more to figure out the underlying reason X can't eat enough.
I am hoping X's tube lasts until Oct.15th. He has small amounts of gross stuff leaking around the site of his button. The doctor we saw yesterday wasn't too concerned about it. It is a very tiny amount, but we've never seen it before with X. We just need it to last 17 more days.
It's been encouraging to see X get through this cold as well as he did. We still have a lot of unknowns, and that is unsettling. I'm just trying to trust in the fact that God knows what is going on and has since the beginning of time. I wouldn't mind knowing myself though too ;). Hopefully at our appt in Oct. we can get more answers. In the meantime we'll just enjoy X's health.
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X still isn't eating much, although he did have a small bowl of cereal and drank the soy milk before bed, that is the most he has eaten in several days. That is all he ate today. I called our nutritionist to see if we can keep X on his feeding tube longer so he can get more calories. He is definitely a bit crankier and has less stamina and needs more than what he gets with the feeding tube alone.
When I called, I found out our nutritionist no longer works at the hospital. Apparently I haven't talked with her since before May. She wasn't comfortable making any recommendations until she talked with the GI doctor because X 's case is "complex". She was most concerned about the amount of protein he gets because they decreased his protein in the spring. She also noted that the notes say they " don't know why decreasing the amount of protein worked". I'm a little concerned because our nutritionist was with us from the beginning and she understood everything and she was just plain great. Maybe having a new pair of eyes will help.
There are still so many unknowns with X. No one knows why he won't eat, why he couldn't tolerate the stomach bolus feeds, why he gets so ill with any little bug, and why less protein helps him. It's scary and overwhelming when I think about all the unknowns. Its easier to ignore it all when he is healthy and doing well. We really should start pushing more to figure out the underlying reason X can't eat enough.
I am hoping X's tube lasts until Oct.15th. He has small amounts of gross stuff leaking around the site of his button. The doctor we saw yesterday wasn't too concerned about it. It is a very tiny amount, but we've never seen it before with X. We just need it to last 17 more days.
It's been encouraging to see X get through this cold as well as he did. We still have a lot of unknowns, and that is unsettling. I'm just trying to trust in the fact that God knows what is going on and has since the beginning of time. I wouldn't mind knowing myself though too ;). Hopefully at our appt in Oct. we can get more answers. In the meantime we'll just enjoy X's health.
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Thursday, September 27, 2012
Blur
The last two nights are a blur. Even though there has been minimal sleep, X continues to do well. He even had his entire feeding last night. That is only two nights without getting all his feedings. A record!! He is eating less than 100 calories, so we'll see how long it takes for him to start eating again. Hopefully not as long as usual.
We took him to the dr today. X has an ear infection again. I think it may be time to meet with ENT. He also lost a pound since Monday. That boy loses weight so quickly it's unbelievable. We are back to 38.8 pounds. I'm not too worried about it because 1) he has extra weight on him and 2) he managed this cold so well. The dr we saw today wasn't our family dr. He was pretty surprised that X receives 80-90% of his calories through the feeding tube. I felt a little sad at his reaction. It wasn't mean or inappropriate, but it made me remember that it isn't normal for a child to need a feeding tube to grow and be healthy.
Tonight X went to bed in his own bed. I am hoping/praying he stays there all night. I can't count the number of times I've had a good swift kick in the head the last few nights. That boy has quite a kick too. For anyone out there who thought I ever needed a good swift kick, consider it done.
N has the cold now and his asthma has been flaring up. Poor guy. I always feel so bad when he needs his nebulizer. This morning, at 6 am, while sitting on the couch with N and X, N asked me why God lets people get sick. Oh boy. He has asked this question many times, especially after X's hospitalizations and while my mother-in-law lived us when she had Alzheimer's and COPD.
What do I say? There's the typical answer "it's a broken world", which seems okay when you're talking about a cold or stomach flu. But it seems trite when talking about bigger stuff. I never feel like I have a great answer for him and I try to focus on how God helps us through the tough stuff and walks with us and how we are never alone. I don't know. He seemed content with my answer, then the three of us snuggled in bed and slept for a couple hours (the best part of my day).
Today went well. I am hoping we will get out tomorrow and enjoy the warm weather the weather-people are talking about.
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We took him to the dr today. X has an ear infection again. I think it may be time to meet with ENT. He also lost a pound since Monday. That boy loses weight so quickly it's unbelievable. We are back to 38.8 pounds. I'm not too worried about it because 1) he has extra weight on him and 2) he managed this cold so well. The dr we saw today wasn't our family dr. He was pretty surprised that X receives 80-90% of his calories through the feeding tube. I felt a little sad at his reaction. It wasn't mean or inappropriate, but it made me remember that it isn't normal for a child to need a feeding tube to grow and be healthy.
Tonight X went to bed in his own bed. I am hoping/praying he stays there all night. I can't count the number of times I've had a good swift kick in the head the last few nights. That boy has quite a kick too. For anyone out there who thought I ever needed a good swift kick, consider it done.
N has the cold now and his asthma has been flaring up. Poor guy. I always feel so bad when he needs his nebulizer. This morning, at 6 am, while sitting on the couch with N and X, N asked me why God lets people get sick. Oh boy. He has asked this question many times, especially after X's hospitalizations and while my mother-in-law lived us when she had Alzheimer's and COPD.
What do I say? There's the typical answer "it's a broken world", which seems okay when you're talking about a cold or stomach flu. But it seems trite when talking about bigger stuff. I never feel like I have a great answer for him and I try to focus on how God helps us through the tough stuff and walks with us and how we are never alone. I don't know. He seemed content with my answer, then the three of us snuggled in bed and slept for a couple hours (the best part of my day).
Today went well. I am hoping we will get out tomorrow and enjoy the warm weather the weather-people are talking about.
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Wednesday, September 26, 2012
2nd Try
I had an entire post all ready to publish and it disappeared. How can that be?
Last night was not fun. X had cycles of sleeping for 45 minutes then being awake for about an hour the entire night. He had been getting his tube feeding for a couple hours when he began thrashing, flailing, kicking, crying, and yelling "ow". We tried to keep the feeding going for another hour, but he was so miserable we had to stop. Within minutes of turning off the feeding tube, X relaxed and fell asleep for a couple hours before the whole sleep-awake cycles began. We did pedialyte the rest of the night and he did fine with that.
I have to say that Craig and I are much better at troubleshooting and figuring out what X needs, even in the middle of the night. It's nice not to be in complete panic mode wondering if we should call the doctor, bring him in, or wondering if it's okay to shut off his feeding pump. We've come a long way
When X wakes up in the middle of the night miserable, he is not an easy one to comfort. Typically he wakes up thrashing, kicking, tossing and turning, flopping from end of the bed to the other, crying, yelling and calling out for me. However, when I try to help him, he does not want me near him, touching him, etc... All while this is playing out, he becomes entangled in his tubing. In his frustration and half asleep state, he will start yanking on that tubing and he resists any help. It is a very surreal experience in the middle of the night. Most of this happens while he is in our bed.
If he is half dreaming and like this, it gets even more interesting. He will often act out what is going on in his dream and we have to get into the dream with him. At one point last night, X was yelling " I can't get to you Momma! You are too far away!" I was able to hold him and tell him I was there and that we didn't need to go anywhere, however he became upset and started yelling "I need to get over there!!" and tried to get "over there". I had to hold him in the bed and pretend to carry him "over there" and then he calmed down and fell back asleep. As this is all going on, Craig is trying to make sure X isn't getting all tangled in his tubing or that he doesn't get too far away from the feeding pump so he doesn't pull on his button ( the part that comes out of his stomach that his tubes attach to). All of this continued until 6 am ( I do have to say our nights can be pretty exciting around here. Thankfully N can sleep through anything, so he has never been woken up).
In the morning, X ate a piece of jelly toast. He even requested it. This has never happened while he has been sick since receiving the feeding tube. Never. He did throw it up later because he was coughing, but we were thrilled he ate something. In fact, Mr. X ate almost 300 calories. This is also unheard of while he is sick. He even ate real food, not just Popsicles. It was very encouraging to see.
At 7:45pm we hooked X up to his feeding pump with undiluted formula and at the rate of 89ml/ hr. He is still hooked up at 1:00am. He hasn't thrown up or thrashed around in the bed and is sleeping peacefully. He even has a cough. This is a major milestone around here. I cannot even begin to describe how big this is over here. I tear up with joy, because this has never happened while he has been sick since getting the feeding tube. Never. He's been like any other child who is ill.
The plan is to keep him on undiluted formula until 4:00am and then switch over to pedialyte to give his gut a rest while making sure he receives the fluids he needs. Even if he does throw up between now and then, I am still going to be thrilled. This is a major improvement for him. This is the most hopeful I have been that X will not need to have this feeding tube forever.
Tonight/this morning, I am grateful that X is doing as well as he is while being sick. I am grateful for the huge improvements we have seen. I am grateful for renewed hope.
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Last night was not fun. X had cycles of sleeping for 45 minutes then being awake for about an hour the entire night. He had been getting his tube feeding for a couple hours when he began thrashing, flailing, kicking, crying, and yelling "ow". We tried to keep the feeding going for another hour, but he was so miserable we had to stop. Within minutes of turning off the feeding tube, X relaxed and fell asleep for a couple hours before the whole sleep-awake cycles began. We did pedialyte the rest of the night and he did fine with that.
I have to say that Craig and I are much better at troubleshooting and figuring out what X needs, even in the middle of the night. It's nice not to be in complete panic mode wondering if we should call the doctor, bring him in, or wondering if it's okay to shut off his feeding pump. We've come a long way
When X wakes up in the middle of the night miserable, he is not an easy one to comfort. Typically he wakes up thrashing, kicking, tossing and turning, flopping from end of the bed to the other, crying, yelling and calling out for me. However, when I try to help him, he does not want me near him, touching him, etc... All while this is playing out, he becomes entangled in his tubing. In his frustration and half asleep state, he will start yanking on that tubing and he resists any help. It is a very surreal experience in the middle of the night. Most of this happens while he is in our bed.
If he is half dreaming and like this, it gets even more interesting. He will often act out what is going on in his dream and we have to get into the dream with him. At one point last night, X was yelling " I can't get to you Momma! You are too far away!" I was able to hold him and tell him I was there and that we didn't need to go anywhere, however he became upset and started yelling "I need to get over there!!" and tried to get "over there". I had to hold him in the bed and pretend to carry him "over there" and then he calmed down and fell back asleep. As this is all going on, Craig is trying to make sure X isn't getting all tangled in his tubing or that he doesn't get too far away from the feeding pump so he doesn't pull on his button ( the part that comes out of his stomach that his tubes attach to). All of this continued until 6 am ( I do have to say our nights can be pretty exciting around here. Thankfully N can sleep through anything, so he has never been woken up).
In the morning, X ate a piece of jelly toast. He even requested it. This has never happened while he has been sick since receiving the feeding tube. Never. He did throw it up later because he was coughing, but we were thrilled he ate something. In fact, Mr. X ate almost 300 calories. This is also unheard of while he is sick. He even ate real food, not just Popsicles. It was very encouraging to see.
At 7:45pm we hooked X up to his feeding pump with undiluted formula and at the rate of 89ml/ hr. He is still hooked up at 1:00am. He hasn't thrown up or thrashed around in the bed and is sleeping peacefully. He even has a cough. This is a major milestone around here. I cannot even begin to describe how big this is over here. I tear up with joy, because this has never happened while he has been sick since getting the feeding tube. Never. He's been like any other child who is ill.
The plan is to keep him on undiluted formula until 4:00am and then switch over to pedialyte to give his gut a rest while making sure he receives the fluids he needs. Even if he does throw up between now and then, I am still going to be thrilled. This is a major improvement for him. This is the most hopeful I have been that X will not need to have this feeding tube forever.
Tonight/this morning, I am grateful that X is doing as well as he is while being sick. I am grateful for the huge improvements we have seen. I am grateful for renewed hope.
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Monday, September 24, 2012
Not Sure What to Title This
Things continue to go well. X was weighed and measured today. 39.8 pounds and 41 1/4 inches tall! We have broken another record for weight. Part of me really wants him to weigh 40 pounds. I feel like I can relax more if he is 40 pounds. When I write that out, I see how I am putting my security in a number. Hmmmmm. Any number on the scale is not going to give me any true security, and really, I need to feel secure in Jesus and the fact that He is taking care of us. In the horrible moments and the good ones.
X is fighting a cold. Today he was cranky, crying, yelling, and screaming a lot. Tonight he was sneezing and sneezing and sneezing. And he has a runny nose. This has sent me into panic mode.
Things have been soooo good. X has been happy and calm. We've been able to be out in public without epic tantrums. He has been doing crafts with me because he can focus and sit still and he has an attention span. He has been enjoying books read to him and he has been healthy and eating. He has also attended a homeschool preschool program and LOVED it and he didn't need me in the room with him. We have gotten the rate of his feeding up to 89 ml/hr. This is the fastest his rate has ever been. Ever. It's a big deal over here. I don't want this to end. I really don't.
This is where that battle of staying in the moment and freaking out over tomorrow ramps up. Heck, sometimes it's about not freaking out what may happen in the next hour, half hour, etc... This is where I need to pray to stay in the moment. We could be woken up tonight with a very sick child. It is possible. And he could lose some weight and take several steps backward in the eating department, etc.... But he might not. And when things have been bad, we have been taken care of. That is what I need to remind myself.
So, again, I will choose to not jump ahead to a future I really don't anything about. I am truly enjoying this time with X and seeing him the healthiest and strongest he has ever been.
Oh yeah, X is having his gj tube replaced on Oct. 15th. It will be 7 months since he had this last one put in. That is the longest he has gone without any serious issues since first getting his feeding tube. 7 months!! I can't believe it's been that long since we were in the hospital. That in itself is a glorious thing.
Tonight Craig said something about X having a cold, and X became very angry and was adamant that he was not getting a cold. I'm sure he knows that whenever he gets any type of illness, he throws up and becomes pretty ill and has doctor appts, etc.. He's a smart little guy. I often wonder how much anxiety he has that he just can't express. He can tell us a lot of things, but he is still only 4 years old. Whenever he starts throwing up from an illness I have to remind him that it doesn't mean he is going to the hospital and he tells me "but my brain keeps telling me I am". sigh
Well, I'm sitting with a pretty miserable little guy right now. We'll see how the night goes.
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X is fighting a cold. Today he was cranky, crying, yelling, and screaming a lot. Tonight he was sneezing and sneezing and sneezing. And he has a runny nose. This has sent me into panic mode.
Things have been soooo good. X has been happy and calm. We've been able to be out in public without epic tantrums. He has been doing crafts with me because he can focus and sit still and he has an attention span. He has been enjoying books read to him and he has been healthy and eating. He has also attended a homeschool preschool program and LOVED it and he didn't need me in the room with him. We have gotten the rate of his feeding up to 89 ml/hr. This is the fastest his rate has ever been. Ever. It's a big deal over here. I don't want this to end. I really don't.
This is where that battle of staying in the moment and freaking out over tomorrow ramps up. Heck, sometimes it's about not freaking out what may happen in the next hour, half hour, etc... This is where I need to pray to stay in the moment. We could be woken up tonight with a very sick child. It is possible. And he could lose some weight and take several steps backward in the eating department, etc.... But he might not. And when things have been bad, we have been taken care of. That is what I need to remind myself.
So, again, I will choose to not jump ahead to a future I really don't anything about. I am truly enjoying this time with X and seeing him the healthiest and strongest he has ever been.
Oh yeah, X is having his gj tube replaced on Oct. 15th. It will be 7 months since he had this last one put in. That is the longest he has gone without any serious issues since first getting his feeding tube. 7 months!! I can't believe it's been that long since we were in the hospital. That in itself is a glorious thing.
Tonight Craig said something about X having a cold, and X became very angry and was adamant that he was not getting a cold. I'm sure he knows that whenever he gets any type of illness, he throws up and becomes pretty ill and has doctor appts, etc.. He's a smart little guy. I often wonder how much anxiety he has that he just can't express. He can tell us a lot of things, but he is still only 4 years old. Whenever he starts throwing up from an illness I have to remind him that it doesn't mean he is going to the hospital and he tells me "but my brain keeps telling me I am". sigh
Well, I'm sitting with a pretty miserable little guy right now. We'll see how the night goes.
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Wednesday, September 12, 2012
Good Times
Things have been good. Very good. For an extended amount of time. This is the best X has been feeling, growing, gaining weight and eating since he received the feeding tube Aug 29, 2011. I feel like we are seeing the true X, the boy he is meant to be. He has been extremely irritable and explosive most of his 4 years of life because he was so behind on calories, or feeling miserable, or throwing up, or stressed from testing and hospitalizations. But not the past two weeks. He is peaceful (still a fireball, but a peaceful fireball), joyful, fun, smiling, and able to tolerate frustrations without a 1-2 or more hour meltdown. Our house is a different house. I am a different mom. And I am grateful. So grateful to see him shine. And he is shining.
I am also fighting feelings of terror and anxiety. I find myself thinking "When will this end?"' "Is this the calm before the storm?", "When is the rug going to be pulled out from under us?", "Don't get too comfortable, because this isn't going to last", "This is just a reprieve because something worse is coming down the road", etc.... It is a battle in my mind most days to not go there. I was thinking about this the other day when I realized, I am letting the fear of tomorrow rob me of the joy of today. I am still learning to live in the moment, to realize, whatever is going to happen tomorrow will happen; whether I worry about it or not, and to enjoy the moments of joy and peace as they come.
X has eaten 300-400 calories a day for the last 3 days. That's a jump from 50-100 calories a day. This is on top of the calories he receives with his feeding tube. He weighed 40 pounds on our scale today. When we started down this road with the feeding tube, he weighed 27 pounds. He has gained about 50% of his body weight in a little over a year. He is still the same strong willed spitfire, but it's different. I don't remember the last meltdown he had in public. I'm not saying that X wasn't fun, or happy. He was those things and he has always put a smile on our faces, but there was always a low level of frustration and he was tired, so tired. Now, he can go on walks with us and not need to be carried.
We still don't know why X will not eat enough or how long he will need the feeding tube. The only diagnosis he has is Failure to Thrive. We will start looking into more testing and will begin more research sometime this fall/ winter. However, for now, I will learn to enjoy the good times we are currently being blessed with.
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I am also fighting feelings of terror and anxiety. I find myself thinking "When will this end?"' "Is this the calm before the storm?", "When is the rug going to be pulled out from under us?", "Don't get too comfortable, because this isn't going to last", "This is just a reprieve because something worse is coming down the road", etc.... It is a battle in my mind most days to not go there. I was thinking about this the other day when I realized, I am letting the fear of tomorrow rob me of the joy of today. I am still learning to live in the moment, to realize, whatever is going to happen tomorrow will happen; whether I worry about it or not, and to enjoy the moments of joy and peace as they come.
X has eaten 300-400 calories a day for the last 3 days. That's a jump from 50-100 calories a day. This is on top of the calories he receives with his feeding tube. He weighed 40 pounds on our scale today. When we started down this road with the feeding tube, he weighed 27 pounds. He has gained about 50% of his body weight in a little over a year. He is still the same strong willed spitfire, but it's different. I don't remember the last meltdown he had in public. I'm not saying that X wasn't fun, or happy. He was those things and he has always put a smile on our faces, but there was always a low level of frustration and he was tired, so tired. Now, he can go on walks with us and not need to be carried.
We still don't know why X will not eat enough or how long he will need the feeding tube. The only diagnosis he has is Failure to Thrive. We will start looking into more testing and will begin more research sometime this fall/ winter. However, for now, I will learn to enjoy the good times we are currently being blessed with.
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Wednesday, August 29, 2012
One Year
Tomorrow will be one year since X first received his feeding tube. Actually it will be a year since I first put the ng tube down his nose and into his stomach. That is something I will never do again.
This was supposed to be a three month deal.
I'm not sure how I feel about all of it. I am thrilled to see how well X is doing. He can take walks with us without having to be carried all the way. He doesn't need to be carried up the stairs anymore. He is wearing 4T shorts. 4T! Last year he was wearing 18 month shorts and 2T shirts. He is growing into his personality and has energy to spare. All of this is amazing and wonderful.
I am also not thrilled that he still has the feeding tube. We have had to accept this feeding tube is a part of our lives and we have had to work around it. We still don't know why X doesn't eat like he should. We don't know why he gets so sick when he catches any little bug. We don't have any answers really about anything. Which makes me fear that he may need the feeding tube for a very long time.
This summer I purposely took a break from tests for X and took a break from researching stuff. I wanted this summer to be filled with sun and fun, and that it has been. As summer comes to end, I know we need to start looking into things again, and that makes me fearful. I am of two things. One, that we will never figure out what is going on and that X will need the feeding tube for the rest of his life. Two, that he has some degenerative disease that they haven't figured out yet. Crazy, I know, but the unknown is one of my biggest fears.
I wanted to write so much more, but I'm having a hard time getting my thoughts together. I've had a lot of mixed emotions with the year anniversary coming up. I truly believed that he would not have the feeding tube at this point. I've also had a couple nightmares about the ng tube. I hope to never have them again.
So, it will be a year tomorrow and we are going to enjoy the glorious weather we have been blessed with.
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This was supposed to be a three month deal.
I'm not sure how I feel about all of it. I am thrilled to see how well X is doing. He can take walks with us without having to be carried all the way. He doesn't need to be carried up the stairs anymore. He is wearing 4T shorts. 4T! Last year he was wearing 18 month shorts and 2T shirts. He is growing into his personality and has energy to spare. All of this is amazing and wonderful.
I am also not thrilled that he still has the feeding tube. We have had to accept this feeding tube is a part of our lives and we have had to work around it. We still don't know why X doesn't eat like he should. We don't know why he gets so sick when he catches any little bug. We don't have any answers really about anything. Which makes me fear that he may need the feeding tube for a very long time.
This summer I purposely took a break from tests for X and took a break from researching stuff. I wanted this summer to be filled with sun and fun, and that it has been. As summer comes to end, I know we need to start looking into things again, and that makes me fearful. I am of two things. One, that we will never figure out what is going on and that X will need the feeding tube for the rest of his life. Two, that he has some degenerative disease that they haven't figured out yet. Crazy, I know, but the unknown is one of my biggest fears.
I wanted to write so much more, but I'm having a hard time getting my thoughts together. I've had a lot of mixed emotions with the year anniversary coming up. I truly believed that he would not have the feeding tube at this point. I've also had a couple nightmares about the ng tube. I hope to never have them again.
So, it will be a year tomorrow and we are going to enjoy the glorious weather we have been blessed with.
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Saturday, August 11, 2012
'tude
I've had a bad attitude this week about X's feeding tube and everything that goes with it. Sleep deprivation definitely plays a role and I think the fact the we are coming up on the year mark for the tube also plays a role. And sometimes, my attitude just stinks. I go through cycles with a good attitude, then a bad attitude.
Today, I am going to list the things I am grateful for instead of whining (which is what I want to do).
It has only taken a week for X to get through his illness and for the throwing up to stop. This is a record for him and tells me he is, in fact doing better than a few months ago.
The feeding tube is working. Although he has lost a pound, he can now afford to lose a pound because he has a good weight.
We have good insurance. That is two things to be thankful for. The fact that we have insurance and that it is good.
X has a good team of doctors and nurses caring for him. I've read some horror stories about medical professionals who were not as good.
Whenever X is having a hard time medically over the weekend, his family doctor or his GI doctor (and sometimes both) are oncall the same weekend. Every time. That is a huge blessing.
X slept in until 10:00am today and took a 3 hour nap yesterday. Those are two beautiful things.
The weather is beautiful.
These are all good things to be thankful for even though life is a bit more challenging at the moment.
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Today, I am going to list the things I am grateful for instead of whining (which is what I want to do).
It has only taken a week for X to get through his illness and for the throwing up to stop. This is a record for him and tells me he is, in fact doing better than a few months ago.
The feeding tube is working. Although he has lost a pound, he can now afford to lose a pound because he has a good weight.
We have good insurance. That is two things to be thankful for. The fact that we have insurance and that it is good.
X has a good team of doctors and nurses caring for him. I've read some horror stories about medical professionals who were not as good.
Whenever X is having a hard time medically over the weekend, his family doctor or his GI doctor (and sometimes both) are oncall the same weekend. Every time. That is a huge blessing.
X slept in until 10:00am today and took a 3 hour nap yesterday. Those are two beautiful things.
The weather is beautiful.
These are all good things to be thankful for even though life is a bit more challenging at the moment.
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Wednesday, August 8, 2012
Will of Steel ( I was going to title this Iron Will, but that's a movie title)
X has a will of steel. It's a beautiful, amazing, maddening, bring me to my knees in prayer kind of will.
Without this strong will, I believe X would not deal with his feeding tube as well as he is.
Without the will, the few cares we need to do for the tube would go a lot more smoothly.
Without X's will, he would not be the adventurer and and risk taker that he is.
Without his will, I would be able to breathe easier and relax during the day.
Without this incredible will, X would be full of compromises and not as determined.
Without his will, I would probably have more quiet moments in our house.
X's will truly is an asset for him. It's challenging to parent and has given me plenty of gray hairs, but I believe he would not be doing as well as he is without it. It also keeps me from slacking as a parent.
When X is behind on calories and nutrition, he is ornery (as anyone would be), however having this strong will takes orneriness to a whole new level. It is fairly common for X to scream at the top of his lungs for a solid hour if he does not get his way or if he has to wait for something. It is not unheard of for him to scream 2+ hours (maybe I should look into Opera lessons for him; that boy has quite a set of lungs on him).
I know X's will can serve him well as he gets older. My prayer is that we parent him well, so that amazing will is used for good.
This was our day yesterday. It was a loud day. In these moments of X's anger and frustration, he does not want to comforted. He does not want to be near anyone. So I give him space. Which is incredibly hard for me to do. I want to read to him, sit with him, hold him.
At times like these, I often think I must look like this to God. Red faced, screaming, crying, shaking my fists in the air, yelling at Him to "go away", and refusing to be comforted. Only it doesn't last for an hour or two. It lasts for days, weeks, months and even years.
Last night, X tolerated his formula at a little faster rate. He is getting a little over half of his required calories now. This morning has been easier. He's still a little "on the edge", but nothing like yesterday. I am grateful for that. He did not throw up last night. He coughed a ton, but no puking. I am grateful for that as well. I am still a little too scared to put the puke buckets away, but am grateful for no puking the last two nights. That has never happened since he received his feeding tube last August.
At the end of the month it will be a year since X first received his feeding tube. It was supposed to be a 3 month gig, but that's another post.
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Without this strong will, I believe X would not deal with his feeding tube as well as he is.
Without the will, the few cares we need to do for the tube would go a lot more smoothly.
Without X's will, he would not be the adventurer and and risk taker that he is.
Without his will, I would be able to breathe easier and relax during the day.
Without this incredible will, X would be full of compromises and not as determined.
Without his will, I would probably have more quiet moments in our house.
X's will truly is an asset for him. It's challenging to parent and has given me plenty of gray hairs, but I believe he would not be doing as well as he is without it. It also keeps me from slacking as a parent.
When X is behind on calories and nutrition, he is ornery (as anyone would be), however having this strong will takes orneriness to a whole new level. It is fairly common for X to scream at the top of his lungs for a solid hour if he does not get his way or if he has to wait for something. It is not unheard of for him to scream 2+ hours (maybe I should look into Opera lessons for him; that boy has quite a set of lungs on him).
I know X's will can serve him well as he gets older. My prayer is that we parent him well, so that amazing will is used for good.
This was our day yesterday. It was a loud day. In these moments of X's anger and frustration, he does not want to comforted. He does not want to be near anyone. So I give him space. Which is incredibly hard for me to do. I want to read to him, sit with him, hold him.
At times like these, I often think I must look like this to God. Red faced, screaming, crying, shaking my fists in the air, yelling at Him to "go away", and refusing to be comforted. Only it doesn't last for an hour or two. It lasts for days, weeks, months and even years.
Last night, X tolerated his formula at a little faster rate. He is getting a little over half of his required calories now. This morning has been easier. He's still a little "on the edge", but nothing like yesterday. I am grateful for that. He did not throw up last night. He coughed a ton, but no puking. I am grateful for that as well. I am still a little too scared to put the puke buckets away, but am grateful for no puking the last two nights. That has never happened since he received his feeding tube last August.
At the end of the month it will be a year since X first received his feeding tube. It was supposed to be a 3 month gig, but that's another post.
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Monday, August 6, 2012
Back Again
X is not able to tolerate his formula again. I wish I knew what was going on in his gut. Whenever he has any kind of "bug", he cannot tolerate his formula and he is not hungry. I am wondering if his motility slows way down. I'll have to call the GI doctor on that one.
X was able to get 300 calories of his 1200 last night and then it was straight pedialyte. We tried a reduced rate of his formula and mixed it with pedialyte, but that didn't help. This evening I will try a slower rate and dilute it more. He is crashed out right now and getting pedialyte because he is so tired and was almost to the point of starting to get lethargic. (he was sleeping on the couch, but woke up and insisted he needs to sleep on The floor) It's amazing how quickly he loses energy and becomes dehydrated.
I can tell the pedialyte isn't sitting all that well with him either. Which is new. He's never had a problem with the pedialyte. It's all so frustrating, because we don't know why the change in his formula worked in the first place.
Well, the puke buckets are back out and I need to be close by him again. Which is a bummer, because it is so gorgeous outside. He should be out enjoying the weather. Praying this cold doesn't stick around long. Dumb germs.
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X was able to get 300 calories of his 1200 last night and then it was straight pedialyte. We tried a reduced rate of his formula and mixed it with pedialyte, but that didn't help. This evening I will try a slower rate and dilute it more. He is crashed out right now and getting pedialyte because he is so tired and was almost to the point of starting to get lethargic. (he was sleeping on the couch, but woke up and insisted he needs to sleep on The floor) It's amazing how quickly he loses energy and becomes dehydrated.
I can tell the pedialyte isn't sitting all that well with him either. Which is new. He's never had a problem with the pedialyte. It's all so frustrating, because we don't know why the change in his formula worked in the first place.
Well, the puke buckets are back out and I need to be close by him again. Which is a bummer, because it is so gorgeous outside. He should be out enjoying the weather. Praying this cold doesn't stick around long. Dumb germs.
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Sunday, August 5, 2012
Take it Easy
So, X threw up last night. And had a fever this morning. He was actually laying on the couch, covered up with a blanket, and quiet. Craig and I were going to some family friends' 50th anniversary celebration at Glensheen and were looking forward to be kid free and dressed up. That didn't happen. Craig stayed home with X.
I am trying to "take it easy" (whenever I say that I hear Nacho Libre saying it. I love that movie). I am not doing all that well "taking it easy". In fact, I should be hooking X up to his feeding pump right now, but I am stalling. X typically does well when he isn't hooked up, it's when he is getting his formula that causes problems. I know we have a plan and I have initiated the plan, but I am scared. Scared he'll get dehydrated again, be hospitalized again, we'll need puke buckets in every room again, and on and on.
This is random, but a few nights ago I noticed one of my hair clips was broken. I was brought right back to the hospital. From a dumb broken hair clip. But they all broke at the hospital and I wore them all the time and Craig had to get me new ones. I immediately remembered how my stomach felt, the exhaustion, the surrealism of it all, the smell of the hospital. All from a hair clip. Weird.
You know the verse, "do not worry about tomorrow....."? For me it's "do not worry about the next hour, half hour, ten minutes". I am still learning to live in the moment, to trust that God has this, that my anxiety will change nothing, and that Jesus will continue to give me whatever I need to help X. That being said, I am almost in tears thinking about hooking him up soon. So, I will take a deep breath, say a prayer, give this over to God, "take it easy" ( in a Nacho Libre voice), and hook X up to his feeding pump.
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I am trying to "take it easy" (whenever I say that I hear Nacho Libre saying it. I love that movie). I am not doing all that well "taking it easy". In fact, I should be hooking X up to his feeding pump right now, but I am stalling. X typically does well when he isn't hooked up, it's when he is getting his formula that causes problems. I know we have a plan and I have initiated the plan, but I am scared. Scared he'll get dehydrated again, be hospitalized again, we'll need puke buckets in every room again, and on and on.
This is random, but a few nights ago I noticed one of my hair clips was broken. I was brought right back to the hospital. From a dumb broken hair clip. But they all broke at the hospital and I wore them all the time and Craig had to get me new ones. I immediately remembered how my stomach felt, the exhaustion, the surrealism of it all, the smell of the hospital. All from a hair clip. Weird.
You know the verse, "do not worry about tomorrow....."? For me it's "do not worry about the next hour, half hour, ten minutes". I am still learning to live in the moment, to trust that God has this, that my anxiety will change nothing, and that Jesus will continue to give me whatever I need to help X. That being said, I am almost in tears thinking about hooking him up soon. So, I will take a deep breath, say a prayer, give this over to God, "take it easy" ( in a Nacho Libre voice), and hook X up to his feeding pump.
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Sunday, July 29, 2012
Gaining
So, on Tuesday, X was weighed and measured. He gained .6 pounds in 12 days and has grown 1/4 inch. I called the GI doctor to see if we needed to add the hour back on his feedings. I still haven't heard anything. We worked so hard to get him to eat high calorie foods those 12 days. I hope it was enough weight gain.
We've also been working on increasing the rate of his feedings. Before our hospital stays in Feb and March, he was only getting 60ml of formula per hour, was hooked up to his feeding pump 20+ hours a day, and we had to drain stuff out of his stomach into a diaper while he slept ( called venting). When we were discharged from the hospital X was at a rate of 80ml per hour and we vented at night for just a few weeks.
Now, X is at 84ml per hour and we are not venting him at all. I do not miss venting him...we had so many leaks and it was a pain when he had to get up to pee in the middle of the night. I would have to hold this heavy diaper and help with tubing and his backpack, all around 3:00 am.
I would LOVE to get him up to 90-100ml per hour, but I don't know if that will work for X. We are increasing his rate by 1ml/hr every 5+ days. Which is a very slow way to increase, but if we go too quickly he will start throwing up again and we will be back to 60ml/hr. When X had the ng tube he was up to 86ml/hr until we tried the bolus feeds and everything went downhill.
Anyway, the good news is, X is gaining weight again and he is at a fast rate for him. He is hooked up from 6pm until 8:45am. He loves getting unhooked so early in the morning and it seems like he is getting hungrier earlier in the day and he is definitely hungrier in the evening.
Oh, and this boy, Mr. X? He is a maniac in the water. I am pretty sure he will be swimming before the summer is over. He is fearless and could care less if water gets up his nose or in his mouth. He is beginning to swim underwater. Really underwater, not just his face in the water. I do not know where this fearlessness comes from. It wasn't that long ago he would scream and cry when he needed his hair washed. Crazy.
I know at times my posts probably sound like a whine-fest. I do realize that we are blessed and fortunate. I don't think we have things worse than everyone else or that our family is unique. Sometimes all this stuff with the feeding tube is overwhelming and an inconvenience ( and yes, an inconvenience is not a horrible thing. I'll take inconvenient over the hospital stuff we had any day). And it's scary because we don't know why X won't eat enough and we don't know why the decrease in the amount of the protein in his formula stopped the vomiting. Those are two pretty big unknowns. I know God knows exactly what is going on, but I do not. So, I am learning to trust in the midst of the unknowns. Not an easy thing for me. I'll chalk it up to character development. But to be honest, I wouldn't mind a little less "character" in my life ;).
one of these times I'm going to leave all the autocorrect words in my post. it will read like a Mad Libs passage.
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We've also been working on increasing the rate of his feedings. Before our hospital stays in Feb and March, he was only getting 60ml of formula per hour, was hooked up to his feeding pump 20+ hours a day, and we had to drain stuff out of his stomach into a diaper while he slept ( called venting). When we were discharged from the hospital X was at a rate of 80ml per hour and we vented at night for just a few weeks.
Now, X is at 84ml per hour and we are not venting him at all. I do not miss venting him...we had so many leaks and it was a pain when he had to get up to pee in the middle of the night. I would have to hold this heavy diaper and help with tubing and his backpack, all around 3:00 am.
I would LOVE to get him up to 90-100ml per hour, but I don't know if that will work for X. We are increasing his rate by 1ml/hr every 5+ days. Which is a very slow way to increase, but if we go too quickly he will start throwing up again and we will be back to 60ml/hr. When X had the ng tube he was up to 86ml/hr until we tried the bolus feeds and everything went downhill.
Anyway, the good news is, X is gaining weight again and he is at a fast rate for him. He is hooked up from 6pm until 8:45am. He loves getting unhooked so early in the morning and it seems like he is getting hungrier earlier in the day and he is definitely hungrier in the evening.
Oh, and this boy, Mr. X? He is a maniac in the water. I am pretty sure he will be swimming before the summer is over. He is fearless and could care less if water gets up his nose or in his mouth. He is beginning to swim underwater. Really underwater, not just his face in the water. I do not know where this fearlessness comes from. It wasn't that long ago he would scream and cry when he needed his hair washed. Crazy.
I know at times my posts probably sound like a whine-fest. I do realize that we are blessed and fortunate. I don't think we have things worse than everyone else or that our family is unique. Sometimes all this stuff with the feeding tube is overwhelming and an inconvenience ( and yes, an inconvenience is not a horrible thing. I'll take inconvenient over the hospital stuff we had any day). And it's scary because we don't know why X won't eat enough and we don't know why the decrease in the amount of the protein in his formula stopped the vomiting. Those are two pretty big unknowns. I know God knows exactly what is going on, but I do not. So, I am learning to trust in the midst of the unknowns. Not an easy thing for me. I'll chalk it up to character development. But to be honest, I wouldn't mind a little less "character" in my life ;).
one of these times I'm going to leave all the autocorrect words in my post. it will read like a Mad Libs passage.
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Thursday, July 26, 2012
Camping!!!
The last week of June into the first week of July, we went tent camping at the Fall Lake campground near Ely. It took a little more planning and packing, but we did it!
We reserved an electrical site and brought the blender and a mini fridge ( thank you again Amy for that idea).
We could have made margaritas!
I measure out and labeled those throw away sippy cups so we could measure out X's formula and store it in the fridge. Then we threw away the cups so we didn't have to worry about having to clean the cups. The only things we needed to wash we're his feeding tubes and the blender. That was a little tricky, but we did it.
Not your typical looking camping picnic table, but it worked for us. Trying to measure out the formula into the cups with swarms of Mosquitos eating away at our hands and legs was less than pleasant. A screen tent is on our wish list now.
We used a bottle warmer by Bambinoz that is ingenious! It's a plastic thing filled with clear fluid (like a flexible ice pack). It has a little metal disc in it. We snapped the disc, the fluid turned cloudy and the pack turned solid and hot. We were able to keep the cups of formula warm for up to an hour in the insulated bag that came with it. Then, in the morning, we just placed the packs in boiling water to reset them and they were ready for the next night.
We recharged X's feeding pump at the electrical box during the day (that was a little nerve racking, having this expensive piece of medical equipment just sitting outside plugged into a post). Other than the cares of X's button, it was like a regular camping trip.
These boys are made to live outdoors.
(he does have shorts on). I love how he doesn't act like there is anything different about him. Children are amazing. They really are resilient.
He is eating raisins. Raisins!
What is it about sleeping children that is so perfect?
Camping was filled with the usual. S'mores, good food, hiking, swimming, climbing trees, and fun. It really wasn't any different than camping before. We actually skipped X's feeding the first night ( our GI doctor said we could skip all 3 nights if we wanted to....we didn't). And he had shortened feedings the other two nights ( he was only hooked up right when he went to bed until he woke up).
We only spilled the formula one night for the middle of the night feeding ( pouring a formula filled bottle into a small opening, with only the light of a flashlight was a little trickier than we thought...next time we'll bring a lantern). I was terrified a skunk or raccoon would try to get in because it smelled the formula ( have I ever mentioned how utterly nasty this stuff smells?). The tubing kinked up a lot as well, so that was a little annoying because this shrill beeping goes off. And I have to say that beep is about 20x louder in a tent.
It was definitely harder keeping the area around his button clean, and we are still dealing with the effects of that. I'll take care of that area differently next time we go camping ( I've agreed to go in the fall when there aren't any bugs).
Overall, it was a fun camping trip. The boys had a blast and it felt good knowing we were able to give X that experience.
Since we don't know how long X will need to have the feeding tube, I never want to tell him " no, you can't do that because you have a feeding tube". I don't mind saying "yes, you can do this, but we may have to do this a little differently". But I don't want to say "no, you can't". And so far, we've been able to do that. That makes me smile.
We reserved an electrical site and brought the blender and a mini fridge ( thank you again Amy for that idea).
We could have made margaritas!
I measure out and labeled those throw away sippy cups so we could measure out X's formula and store it in the fridge. Then we threw away the cups so we didn't have to worry about having to clean the cups. The only things we needed to wash we're his feeding tubes and the blender. That was a little tricky, but we did it.
Not your typical looking camping picnic table, but it worked for us. Trying to measure out the formula into the cups with swarms of Mosquitos eating away at our hands and legs was less than pleasant. A screen tent is on our wish list now.
We used a bottle warmer by Bambinoz that is ingenious! It's a plastic thing filled with clear fluid (like a flexible ice pack). It has a little metal disc in it. We snapped the disc, the fluid turned cloudy and the pack turned solid and hot. We were able to keep the cups of formula warm for up to an hour in the insulated bag that came with it. Then, in the morning, we just placed the packs in boiling water to reset them and they were ready for the next night.
We recharged X's feeding pump at the electrical box during the day (that was a little nerve racking, having this expensive piece of medical equipment just sitting outside plugged into a post). Other than the cares of X's button, it was like a regular camping trip.
These boys are made to live outdoors.
(he does have shorts on). I love how he doesn't act like there is anything different about him. Children are amazing. They really are resilient.
He is eating raisins. Raisins!
What is it about sleeping children that is so perfect?
Camping was filled with the usual. S'mores, good food, hiking, swimming, climbing trees, and fun. It really wasn't any different than camping before. We actually skipped X's feeding the first night ( our GI doctor said we could skip all 3 nights if we wanted to....we didn't). And he had shortened feedings the other two nights ( he was only hooked up right when he went to bed until he woke up).
We only spilled the formula one night for the middle of the night feeding ( pouring a formula filled bottle into a small opening, with only the light of a flashlight was a little trickier than we thought...next time we'll bring a lantern). I was terrified a skunk or raccoon would try to get in because it smelled the formula ( have I ever mentioned how utterly nasty this stuff smells?). The tubing kinked up a lot as well, so that was a little annoying because this shrill beeping goes off. And I have to say that beep is about 20x louder in a tent.
It was definitely harder keeping the area around his button clean, and we are still dealing with the effects of that. I'll take care of that area differently next time we go camping ( I've agreed to go in the fall when there aren't any bugs).
Overall, it was a fun camping trip. The boys had a blast and it felt good knowing we were able to give X that experience.
Since we don't know how long X will need to have the feeding tube, I never want to tell him " no, you can't do that because you have a feeding tube". I don't mind saying "yes, you can do this, but we may have to do this a little differently". But I don't want to say "no, you can't". And so far, we've been able to do that. That makes me smile.
Tuesday, July 24, 2012
Here and Now
Today I am having a harder time struggling with anxiety over X. I think it's for several reasons.
1). Last night the news had a segment on Whooping Cough. They had videos of children coughing. I've had seen these same images last week and they didn't affect me, but this time Craig pointed out one of the little boys looked like X. When I saw this little guy coughing so hard, I almost threw up and had that "zing" of adrenaline. I was almost back in those months leading up to our last hospital stay when X was so ill.
2). This morning X woke up stuffy and coughed on the gunk in his throat and immediately became nauseated. The puke bucket was back out, his feeding was paused and he was a bit panicked, but he was able to breathe through it and was okay. That definitely brought me back to the days of him being so sick ( he is so gaggy that any gunk in his throat makes him gag, and his tummy is so sensitive that any coughing makes him nauseous).
3). Tomorrow he'll get weighed and if he hasn't gained even a couple ounces, we need to add an hour to his feedings.
4). In October, X will have his feeding tube changed. For whatever reason, his system doesn't do well with these changes. Fall will be here before we know it.
5). Once fall is here, the flu and cold season begins. Whenever X gets any type of illness it results in throwing up and decreased feedings and weight loss.
6). N had his recheck for the patch on his eardrum last July. He still has a mild hearing loss and the audiologist said he had a small opening in his eardrum. For a while we thought N needed another surgery. Then the ENT removed some gunk from N's ear and he almost fainted. Poor guy had to lay down for a good 20 minutes in the office. He, thankfully, does not need surgery. The opening is the size of a pinhole, so we are good for now.
Sometimes I don't understand why I have the anxiety. We have had 3 months without throwing up or nausea (until this morning). And I am so grateful for these months. This is the best summer we have had in 5 years. I suppose some of this is to be expected. As long as I don't sit in the anxiety and dwell on all the things that could go wrong. The reality is, I have way more to be thankful for than to be worried about. Sometimes writing my worries down helps me to see the truth.
The truth is, X is not throwing up and we are not in the hospital. X is growing taller, even if he isn't gaining weight at the moment. He is wearing 4T shirts and shorts now. Last year at this time he was wearing 18 month shorts and 2T shirts. 3T shirts were huge on him. He is eating a huge variety of foods. Last year he would only eat crackers, cooked broccoli and peas, sun butter and jelly sandwiches and lunch meat. He would gag looking at most other foods and cry when foods were in his plate. We have a plan that works when he throws up when he is ill to keep him out of the hospital and help him tolerate his feeds. And the plan has worked. The doctors now understand X's GI system, even though he defies most medical sense and they understand I am not over exaggerating his symptoms. The radiologist knows where to place the g-j tube so X can tolerate it.
Okay, I think I just discredited all those anxieties. Sometimes I feel like a crazy person with all these thoughts swirling around. And luck you, you get a glimpse into my craziness ;). I would shut the share function off on this post, but I think I'd lose the whole post. Next time I'll shut the share function off on these types of posts before I start typing. And the next post will be about our camping trip earlier in the month.
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1). Last night the news had a segment on Whooping Cough. They had videos of children coughing. I've had seen these same images last week and they didn't affect me, but this time Craig pointed out one of the little boys looked like X. When I saw this little guy coughing so hard, I almost threw up and had that "zing" of adrenaline. I was almost back in those months leading up to our last hospital stay when X was so ill.
2). This morning X woke up stuffy and coughed on the gunk in his throat and immediately became nauseated. The puke bucket was back out, his feeding was paused and he was a bit panicked, but he was able to breathe through it and was okay. That definitely brought me back to the days of him being so sick ( he is so gaggy that any gunk in his throat makes him gag, and his tummy is so sensitive that any coughing makes him nauseous).
3). Tomorrow he'll get weighed and if he hasn't gained even a couple ounces, we need to add an hour to his feedings.
4). In October, X will have his feeding tube changed. For whatever reason, his system doesn't do well with these changes. Fall will be here before we know it.
5). Once fall is here, the flu and cold season begins. Whenever X gets any type of illness it results in throwing up and decreased feedings and weight loss.
6). N had his recheck for the patch on his eardrum last July. He still has a mild hearing loss and the audiologist said he had a small opening in his eardrum. For a while we thought N needed another surgery. Then the ENT removed some gunk from N's ear and he almost fainted. Poor guy had to lay down for a good 20 minutes in the office. He, thankfully, does not need surgery. The opening is the size of a pinhole, so we are good for now.
Sometimes I don't understand why I have the anxiety. We have had 3 months without throwing up or nausea (until this morning). And I am so grateful for these months. This is the best summer we have had in 5 years. I suppose some of this is to be expected. As long as I don't sit in the anxiety and dwell on all the things that could go wrong. The reality is, I have way more to be thankful for than to be worried about. Sometimes writing my worries down helps me to see the truth.
The truth is, X is not throwing up and we are not in the hospital. X is growing taller, even if he isn't gaining weight at the moment. He is wearing 4T shirts and shorts now. Last year at this time he was wearing 18 month shorts and 2T shirts. 3T shirts were huge on him. He is eating a huge variety of foods. Last year he would only eat crackers, cooked broccoli and peas, sun butter and jelly sandwiches and lunch meat. He would gag looking at most other foods and cry when foods were in his plate. We have a plan that works when he throws up when he is ill to keep him out of the hospital and help him tolerate his feeds. And the plan has worked. The doctors now understand X's GI system, even though he defies most medical sense and they understand I am not over exaggerating his symptoms. The radiologist knows where to place the g-j tube so X can tolerate it.
Okay, I think I just discredited all those anxieties. Sometimes I feel like a crazy person with all these thoughts swirling around. And luck you, you get a glimpse into my craziness ;). I would shut the share function off on this post, but I think I'd lose the whole post. Next time I'll shut the share function off on these types of posts before I start typing. And the next post will be about our camping trip earlier in the month.
- Posted using BlogPress from my iPad
Monday, July 23, 2012
Tomorrows
I am so thankful for tomorrows! This morning was a good morning.
X did a fantastic job at feeding therapy. He ate small bits of tortillas wrapped around avocado and black beans like it was nothing. He had never had black beans before and was a little hesitant for about 30 seconds, but then it was all systems go! We have come so far from a year ago. Whenever he would look at a new food he would gag, get cranky, leave the table and often have a meltdown. We couldn't get him to sit at the table with us and mealtimes were loud and stressful. Now, he runs to the table excitedly and asks, "what's for supper?!". There isn't anything he won't at least try. It's amazing.
Today I was talking to a new therapist who was observing his session and I was explaining all this to her when it hit me. He has come a looong way! Its easy to forget that when I am in the day to day stuff and dealing with the feeding tube. I am grateful for this reminder. I don't know how long X will need his feeding tube (nobody knows) but I do know he is improving and growing and eating, so I don't think it will be forever. It could be years I guess (but I really hope not).
There is no way he would have eaten anything like this a year ago.
I feel that when I start to lose sight of how well things are going, or when I am caught up in the frustrating stuff, God gently helps me see the bigger picture. For that I am grateful.
X did a fantastic job at feeding therapy. He ate small bits of tortillas wrapped around avocado and black beans like it was nothing. He had never had black beans before and was a little hesitant for about 30 seconds, but then it was all systems go! We have come so far from a year ago. Whenever he would look at a new food he would gag, get cranky, leave the table and often have a meltdown. We couldn't get him to sit at the table with us and mealtimes were loud and stressful. Now, he runs to the table excitedly and asks, "what's for supper?!". There isn't anything he won't at least try. It's amazing.
Today I was talking to a new therapist who was observing his session and I was explaining all this to her when it hit me. He has come a looong way! Its easy to forget that when I am in the day to day stuff and dealing with the feeding tube. I am grateful for this reminder. I don't know how long X will need his feeding tube (nobody knows) but I do know he is improving and growing and eating, so I don't think it will be forever. It could be years I guess (but I really hope not).
There is no way he would have eaten anything like this a year ago.
I feel that when I start to lose sight of how well things are going, or when I am caught up in the frustrating stuff, God gently helps me see the bigger picture. For that I am grateful.
Sunday, July 22, 2012
Hunger
August 16, 2011
Well, the adventures with Maddox continue. We met with his GI doc last Tues, expecting to hear that Maddox was normal, just a little guy, but normal. Turns out that isn't the case. Maddox is not eating enough and is showing some signs of malnourishment in his blood work. He won't eat more than 1200 calories and he should be eating between 1500-1800. His white blood count was also low, so they rechecked that. (we haven't heard the results yet).
They are also checking him for Shwachmann-Diamond Syndrome. It has to do with the pancreas not working properly and troubles with bone marrow. But I am not too convinced he has that, and neither is the Dr.If he does have it, it is easily treated with enzymes, although he would need a bone marrow biopsy 1x/year.
The Dr also said that we need to do a feeding tube for Maddox. One that goes through his nose. The reasoning behind this: Because Maddox has never eaten much (because of the allergies and reflux), his body is in an aneorexic type state, so he doesn't feel hungry like he should and he fills up quickly. Which is why he isn't eating enough food. I met with our family Dr and he agreed with the plan, I talked with our nutrionist and she also agreed and has seen very good results with children like Maddox.
My biggest concern is the feeding tube. They don't sedate the children when they place the tube in through their nose and it is very uncomfortable. I also don't know exactly when we feed him with the tube. The Dr mentioned feeding him while he sleeps at night, but Maddox moves around so much at night, I don't know how that would even work. I would be afraid he would pull it out while rolling around and let the food go into his lungs. I obviously have a lot of questions for the Dr. I am waiting to hear from his nurse to see if she can get me in touch with some families who have done this before (Dr.'s idea). As soon as I ask my questions and talk with a family we'll schedule the appt, which I am sure will be right away.
sigh
I was hoping this month would be a nice relaxing month of hanging out at the beach and gearing up for school. next year.;)
So, that is what's going on around here. just tying to feed Maddox and sneak calories in where I can. We did go campling this past weekend. I'll have a post about that soon.
Well, the adventures with Maddox continue. We met with his GI doc last Tues, expecting to hear that Maddox was normal, just a little guy, but normal. Turns out that isn't the case. Maddox is not eating enough and is showing some signs of malnourishment in his blood work. He won't eat more than 1200 calories and he should be eating between 1500-1800. His white blood count was also low, so they rechecked that. (we haven't heard the results yet).
They are also checking him for Shwachmann-Diamond Syndrome. It has to do with the pancreas not working properly and troubles with bone marrow. But I am not too convinced he has that, and neither is the Dr.If he does have it, it is easily treated with enzymes, although he would need a bone marrow biopsy 1x/year.
The Dr also said that we need to do a feeding tube for Maddox. One that goes through his nose. The reasoning behind this: Because Maddox has never eaten much (because of the allergies and reflux), his body is in an aneorexic type state, so he doesn't feel hungry like he should and he fills up quickly. Which is why he isn't eating enough food. I met with our family Dr and he agreed with the plan, I talked with our nutrionist and she also agreed and has seen very good results with children like Maddox.
My biggest concern is the feeding tube. They don't sedate the children when they place the tube in through their nose and it is very uncomfortable. I also don't know exactly when we feed him with the tube. The Dr mentioned feeding him while he sleeps at night, but Maddox moves around so much at night, I don't know how that would even work. I would be afraid he would pull it out while rolling around and let the food go into his lungs. I obviously have a lot of questions for the Dr. I am waiting to hear from his nurse to see if she can get me in touch with some families who have done this before (Dr.'s idea). As soon as I ask my questions and talk with a family we'll schedule the appt, which I am sure will be right away.
sigh
I was hoping this month would be a nice relaxing month of hanging out at the beach and gearing up for school. next year.;)
So, that is what's going on around here. just tying to feed Maddox and sneak calories in where I can. We did go campling this past weekend. I'll have a post about that soon.
Frustrations
X is getting tired of his feeding tube. I am too. I don't blame him. He's so active and has to lug this backpack around wherever he goes while he is hooked up. At night he has all this tubing that sometimes wraps around his legs or torso. He usually needs to pee around 4am and needs help because he's half asleep trying to move around with the tubing and backpack (our bathroom is downstairs and he is just too big for the potty chair we had in his room).
The other morning he was demanding that I get him a shirt from his bedroom. When I did not comply with his "request", he burst into tears and screamed " but I don't want to have to carry my backpack!!!!". My heart sank. I compromised and carried the backpack and tubing for him while he picked out a shirt.
Tonight I decided one of these mornings N (our oldest son) and I will wear backpacks with a long string coming out of it attached to our waist for one hour. Just so we can empathize more with X. N is not thrilled about this plan. At. All. Which tells me this will be an excellent experience for everyone.
Ever since camping three weeks ago, X has been having issues with granulation tissue. It's extra skin that grows up around the opening where the Mic-Key button enters his stomach (it's called a stoma, but that word gives me the heebie-jeebies...I don't know why, it never used to). He didn't have any before camping and now I can't get rid of it. It can get out of control pretty fast, so it's something I want to get rid of as soon as possible. To help, I have been taking the tubes off of his button when his feeding is done, so they don't pull on it. He cannot stand having them taken off or put back on. Not because it hurts, but because it interrupts whatever he is doing. I try to do it at the same time everyday, but that isn't always possible. There is usually a lot of screaming and yelling involved. I'll probably have some form of hearing loss soon. It doesn't happen all the time, but definitely the majority of the time.
It's hard to balance it all (at least for me). Tonight was a rough night and I was less than patient with X, and it's nights like these when I want to chuck the thing in the trash can. However, I can't deny how much his feeding tube has helped him and continues to help him. I belong to two groups on facebook that are about feeding disorders and feeding tubes and I know we are blessed beyond belief. The days and nights aren't always easy, but Jesus continues to give me everything I need and thankfully there is a lot of grace and mercy involved. X has been given everything he needs to do this, and I see that on a daily basis, which blows my mind at times. N is learning things on so many different levels, it's astounding. So, we'll continue on this path, with the hope that X will be able to wean off his feeding tube.
The other morning he was demanding that I get him a shirt from his bedroom. When I did not comply with his "request", he burst into tears and screamed " but I don't want to have to carry my backpack!!!!". My heart sank. I compromised and carried the backpack and tubing for him while he picked out a shirt.
Tonight I decided one of these mornings N (our oldest son) and I will wear backpacks with a long string coming out of it attached to our waist for one hour. Just so we can empathize more with X. N is not thrilled about this plan. At. All. Which tells me this will be an excellent experience for everyone.
Ever since camping three weeks ago, X has been having issues with granulation tissue. It's extra skin that grows up around the opening where the Mic-Key button enters his stomach (it's called a stoma, but that word gives me the heebie-jeebies...I don't know why, it never used to). He didn't have any before camping and now I can't get rid of it. It can get out of control pretty fast, so it's something I want to get rid of as soon as possible. To help, I have been taking the tubes off of his button when his feeding is done, so they don't pull on it. He cannot stand having them taken off or put back on. Not because it hurts, but because it interrupts whatever he is doing. I try to do it at the same time everyday, but that isn't always possible. There is usually a lot of screaming and yelling involved. I'll probably have some form of hearing loss soon. It doesn't happen all the time, but definitely the majority of the time.
It's hard to balance it all (at least for me). Tonight was a rough night and I was less than patient with X, and it's nights like these when I want to chuck the thing in the trash can. However, I can't deny how much his feeding tube has helped him and continues to help him. I belong to two groups on facebook that are about feeding disorders and feeding tubes and I know we are blessed beyond belief. The days and nights aren't always easy, but Jesus continues to give me everything I need and thankfully there is a lot of grace and mercy involved. X has been given everything he needs to do this, and I see that on a daily basis, which blows my mind at times. N is learning things on so many different levels, it's astounding. So, we'll continue on this path, with the hope that X will be able to wean off his feeding tube.
Jumping In
I've been meaning to start a blog related to our youngest son's feeding issues (I'll refer to him as X) for a while now. X has had a feeding tube for almost 11 months now (we were told it would be a 3 month gig). He received a tube through his nose (n-g) tube Aug 29, 2011 and later received a g-j tube (one tube goes to his stomach, the other part goes to his small intestine) Dec.9th, 2011.
I've been blogging about it on my family blog, but that's really all I have been blogging about, and that is not all our life is about, so il decided to go with a separate blog.
I'll try to move posts from my other blog (if that's even possible), but for now, I'll just blog about where we are at right now.
X needed to get a feeding tube because he stopped growing and stopped gaining weight. His growth curve was flat. He didn't eat much, gagged just looking at most foods, and refluxed. He has several food allergies (but we are down to 5 foods from 15) which also get in the way of him taking in enough calories. He receives feeding therapy 1x week and that has made all the difference for him.
X is doing great right now. He is eating a lot more variety of foods (fresh fruits and vegetables), however he is not eating high calorie foods, which means he hasn't gained weight in 2 weeks and chances are we'll need to increase the amount of time he is on his feeding tube. sigh. We just decreased the amount of time he was on it by one hour 3 weeks ago.
One hour may not seem like much, but in our world, it's one more hour of freedom for X. Currently, X is hooked up to his feeding pump from 6pm until 9am. If he wants to play outside after supper, he needs to wear this little black nylon backpack and run around with 320ml of formula in it. That isn't all that fun when its 80-90 degrees out with high humidity while running around and playing on the playset. It also means we don't go to the beach after supper to cool down on hot days, because he can't exactly swim or immerse himself in the water with the feeding pump.
Last year I rigged up the pump and backpack with plastic bags so he could play in the sprinkler and play a little in the lake, but he is way more adventurous now, so that won't work. If we have to hook him up at 5pm, that would just stink.
So that's where we are at. I still can't believe it when I see X walking around with an apple while we are at a park and chomping away at it. It brings tears to my eyes. Or like today, he was munching on pea pods and baby carrots and crackers while at a park like most other kids. You would have never thought he needed a feeding tube. Somedays I just cry with thankfulness as he is eating and at his excitement to eat. Crazy huh? How just the simple act of my son eating food brings such joy to my heart. But that is our world at the moment and we are in a good place and I will continue to live in the moment and be happy.
I've been blogging about it on my family blog, but that's really all I have been blogging about, and that is not all our life is about, so il decided to go with a separate blog.
I'll try to move posts from my other blog (if that's even possible), but for now, I'll just blog about where we are at right now.
X needed to get a feeding tube because he stopped growing and stopped gaining weight. His growth curve was flat. He didn't eat much, gagged just looking at most foods, and refluxed. He has several food allergies (but we are down to 5 foods from 15) which also get in the way of him taking in enough calories. He receives feeding therapy 1x week and that has made all the difference for him.
X is doing great right now. He is eating a lot more variety of foods (fresh fruits and vegetables), however he is not eating high calorie foods, which means he hasn't gained weight in 2 weeks and chances are we'll need to increase the amount of time he is on his feeding tube. sigh. We just decreased the amount of time he was on it by one hour 3 weeks ago.
One hour may not seem like much, but in our world, it's one more hour of freedom for X. Currently, X is hooked up to his feeding pump from 6pm until 9am. If he wants to play outside after supper, he needs to wear this little black nylon backpack and run around with 320ml of formula in it. That isn't all that fun when its 80-90 degrees out with high humidity while running around and playing on the playset. It also means we don't go to the beach after supper to cool down on hot days, because he can't exactly swim or immerse himself in the water with the feeding pump.
Last year I rigged up the pump and backpack with plastic bags so he could play in the sprinkler and play a little in the lake, but he is way more adventurous now, so that won't work. If we have to hook him up at 5pm, that would just stink.
So that's where we are at. I still can't believe it when I see X walking around with an apple while we are at a park and chomping away at it. It brings tears to my eyes. Or like today, he was munching on pea pods and baby carrots and crackers while at a park like most other kids. You would have never thought he needed a feeding tube. Somedays I just cry with thankfulness as he is eating and at his excitement to eat. Crazy huh? How just the simple act of my son eating food brings such joy to my heart. But that is our world at the moment and we are in a good place and I will continue to live in the moment and be happy.
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