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.
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Friday, October 19, 2012
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.
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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
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