Jerry's been busy with work so I am going to take a moment to provide an update. A lot of great things are happening in the White House and I want to share all the good news. It is impossible to make a note of everything that has happened in the last few months but I'll provide the most notable highlights.
Jerry last reported that we were waiting for the results of Zachary's sleep study. We hoped the results would be good enough to allow us to start weaning Zachary from his ventilator. The results were great! We did not wean Zachary from his ventilator though, we stopped using it cold turkey. I was scared and nervous about taking such a big step. After all, Zachary had been using a ventilator the vast majority of his life (except for a few weeks on CPAP and a few days on just oxygen). On the other hand, I was so happy doctors had faith in Zachary's improvement that it was hard to keep back the tears and stop myself from doing the happy dance. No more vent as of November 28, 2012. Big stuff.
It is not all good though. Zachary has needed oxygen on occasion since we stopped using the vent. We don't think he has been sick so we are stumped by the need for O2. Zachary had an appointment with his pulmonologist last week and he suggested it could be an airway issue. I do not want to think about this because it could mean another surgery. Obviously we will be seeing Zachary's ENT (ear, nose, and throat doctor) to discuss.
At this time, cardiology and pulmonology have cleared Zachary for Trach removal. One more doctor to go, ENT. (Of course, a new specialist could be sprung on us any day). There will be lots of checks and double checks, plus at least one hospital stay, before the Trach is removed, so we have a few months to go, at least. Fingers crossed.
In other news, we stopped giving Zachary his high calorie formula. I have spent more time on weight/feeding/reflux issues than anything else, including respiratory. I took Zachary to many doctors regarding his weight/reflux/feeding issues and received all kinds of opinions from he's fine to he needs to be in the hospital. It has been tough trying to figure out what to do.
The fact was that Zachary was vomiting daily, sometimes up to six times daily on the formula. Medication was not helping. He was getting the formula mostly by drinking it from a bottle, but sometimes I did have to supplement his caloric intake and use the g-tube. Despite getting him the required amount of calories his weight gain was marginal. I decided I did not have much to lose. We had experience from our first attempt giving him real food, so we used that as a base and began. I stopped the formula and after a few days (a few very difficult days) Zachary got hungry enough and started to eat. I took Zachary to his nutritionist and pediatrician about week after I stopped the formula. Zachary was making progress, he was starting to eat. To my surprise, they were supportive. Despite a significant weight loss, but not a dangerous one, I was told to keep at it, and good job. Whew. I feel so much better about giving my son real food. And Zachary is gaining weight better than ever and the vomiting has stopped.
Zachary has been in feeding therapy since he was in the NICU. We were warned that many many preemies have oral aversions. Zachary is a part of this club. I thought eating issues would be an easy fix once we got through the first G-tube wean. I know now that there is no easy fix. Zachary will probably be in feeding therapy for a very long time - years possibly. Right now everyone's biggest concern is that Zachary does not bite or chew. He eats soft foods, like yogurt, purees, hummus, mashed potatoes. The speech therapist gives me lots of exercises and games to play with Zachary to get him to use is mouth in new ways. The nutritionist requests that I mash and puree this, that, and the other things, for better nutrition (and she requests that I add butter and cream to everything too - yummy). Zachary of course does not the like the games or foods at first, but I must do them multiple times each day. Exhausting! I know all this work will eventually pay off (we have seen progress), but it is tough. The progress is very very slow. I am tired of making mashed sweet potatoes (or whatever) every day for weeks only to have Zachary reject them every time, until that one magic day he eats a bite or two and FINALLY a whole bowl.
And don't get me started on what happens to all the food Zachary does not eat. My new jean size proves those yummy sweet potatoes loaded with butter and cream did get eaten.
Jerry last reported that we were waiting for the results of Zachary's sleep study. We hoped the results would be good enough to allow us to start weaning Zachary from his ventilator. The results were great! We did not wean Zachary from his ventilator though, we stopped using it cold turkey. I was scared and nervous about taking such a big step. After all, Zachary had been using a ventilator the vast majority of his life (except for a few weeks on CPAP and a few days on just oxygen). On the other hand, I was so happy doctors had faith in Zachary's improvement that it was hard to keep back the tears and stop myself from doing the happy dance. No more vent as of November 28, 2012. Big stuff.
It is not all good though. Zachary has needed oxygen on occasion since we stopped using the vent. We don't think he has been sick so we are stumped by the need for O2. Zachary had an appointment with his pulmonologist last week and he suggested it could be an airway issue. I do not want to think about this because it could mean another surgery. Obviously we will be seeing Zachary's ENT (ear, nose, and throat doctor) to discuss.
At this time, cardiology and pulmonology have cleared Zachary for Trach removal. One more doctor to go, ENT. (Of course, a new specialist could be sprung on us any day). There will be lots of checks and double checks, plus at least one hospital stay, before the Trach is removed, so we have a few months to go, at least. Fingers crossed.
In other news, we stopped giving Zachary his high calorie formula. I have spent more time on weight/feeding/reflux issues than anything else, including respiratory. I took Zachary to many doctors regarding his weight/reflux/feeding issues and received all kinds of opinions from he's fine to he needs to be in the hospital. It has been tough trying to figure out what to do.
The fact was that Zachary was vomiting daily, sometimes up to six times daily on the formula. Medication was not helping. He was getting the formula mostly by drinking it from a bottle, but sometimes I did have to supplement his caloric intake and use the g-tube. Despite getting him the required amount of calories his weight gain was marginal. I decided I did not have much to lose. We had experience from our first attempt giving him real food, so we used that as a base and began. I stopped the formula and after a few days (a few very difficult days) Zachary got hungry enough and started to eat. I took Zachary to his nutritionist and pediatrician about week after I stopped the formula. Zachary was making progress, he was starting to eat. To my surprise, they were supportive. Despite a significant weight loss, but not a dangerous one, I was told to keep at it, and good job. Whew. I feel so much better about giving my son real food. And Zachary is gaining weight better than ever and the vomiting has stopped.
Zachary has been in feeding therapy since he was in the NICU. We were warned that many many preemies have oral aversions. Zachary is a part of this club. I thought eating issues would be an easy fix once we got through the first G-tube wean. I know now that there is no easy fix. Zachary will probably be in feeding therapy for a very long time - years possibly. Right now everyone's biggest concern is that Zachary does not bite or chew. He eats soft foods, like yogurt, purees, hummus, mashed potatoes. The speech therapist gives me lots of exercises and games to play with Zachary to get him to use is mouth in new ways. The nutritionist requests that I mash and puree this, that, and the other things, for better nutrition (and she requests that I add butter and cream to everything too - yummy). Zachary of course does not the like the games or foods at first, but I must do them multiple times each day. Exhausting! I know all this work will eventually pay off (we have seen progress), but it is tough. The progress is very very slow. I am tired of making mashed sweet potatoes (or whatever) every day for weeks only to have Zachary reject them every time, until that one magic day he eats a bite or two and FINALLY a whole bowl.
And don't get me started on what happens to all the food Zachary does not eat. My new jean size proves those yummy sweet potatoes loaded with butter and cream did get eaten.
Zachary also had a follow up appointment to check his fistula repair. It was a very long and frustrating appointment that deserves a post all its own, but the news is that things are healing OK. The healing isn't the best case scenario, but good enough that he won't have any problems long term. The doctor seemed satisfied with the results. Zachary will have to be followed for a few more years (yikes) just on this one issue alone.
Zachary is cuter than ever. He is walking, running, and climbing all over the place. He's not talking yet, but using more and more sign language everyday. Just yesterday he signed Mama - twice. I would have rewarded him with ice cream if he'd eat it.
Thank you for reading!
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