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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Saturday, September 29, 2012
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.
- Posted using BlogPress from my iPad
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.
- Posted using BlogPress from my iPad
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.
- Posted using BlogPress from my iPad
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