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
- Posted using BlogPress from my iPad
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
- Posted using BlogPress from my iPad
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