Jerry and I are walking around the house holding our breath hoping nothing goes wrong as we wait for Zachary to be decannulated, medical-speak for getting the trach out. We think it may be very soon. We hope it is soon. It is like waiting for Christmas, but better, only with a fear that someone may decide to cancel Christmas at any moment.
I am trying not to get excited about the possibility of decannulation. I fear that if I get excited I will be faced with a huge disappointment if it does not happen. I am trying to breathe, trying to focus on the day in front of me, trying to not sit around and wait for Christmas, whenever that my be. It is hard not to think about it though.
From the moment Zachary received his trach we've been working toward getting rid of it, weaning the vent, first during the day, then at night. Then weaning the oxygen, wearing speaking valves and now capping. The trach was supposed to help Zachary breathe and give him a chance to grow and develop. I believe the trach achieved those goals. Zachary is growing and he is learning. Zachary has come a long way and I am so proud of him.
I imagine a trach-free future for Zachary, full of swimming lessons, trips to the beach, splashing in the pool, and all the other things kids with trachs can't do. I look forward getting out of the house without lugging emergency bags, suction machines, pulse oximeters, and oxygen tanks. I imagine a life that is a tad bit simpler and with a lot more closet space once the trach supplies are gone.
Getting the trach out will be a major accomplishment. We will keep you posted on Zachary's progress. I hope to have big news to report soon, very soon. It's going to be a big week, maybe.
Saturday, February 23, 2013
Sunday, February 17, 2013
Too many appointments!
It is me again, Erin, Jerry's wife. Today I am feeling a bit sad about how lonely our lives are. It is hard to explain what it is like to have a child so fragile he can only be cared for by one of us or a nurse AND is difficult to get out of the house. Because of that we hardly ever go anywhere together.
Our favorite nurse had volunteered to work Saturday night this past week and we were looking forward to a night out. It was disappointing that something came up and she had to leave early. I think this would be a disappointment to anyone with children, but the thing is - we can't reschedule. We cant just get a baby sitter for next weekend. Under normal circumstances we may have grabbed our kid and gone out for a family dinner. But it is flu season. We do not want to risk the flu. So we stayed home and consoled ourselves by letting the dishes sit in the sink while we watched TV - which we hardly ever have time do. It is 3:00pm the next day and the dishes are still there.
Zachary had five appointments last week. He had physical therapy, speech therapy, a meeting with respiratory therapy, nutrition appointment, and we had an appointment with one more gastroenterologist.
Zachary works hard in PT. Lucky for my the PT does not let me participate in the sessions any more. I am too much of a distraction for Zachary. I spend five minutes with her at the beginning of the appointment and five minutes at the end getting my homework assignments. The PT and nurse handle the session. Don't worry, I do not mind having an extra 50 minutes to myself!
I have to be involved in ST. This week Zachary bit an apple. Like I said last time, progress is slow. We gave Zachary lots of praise for using his teeth. I feel ridiculous sometimes, but progress is progress no matter how slow. The nutritionist was amazed with Zachary's weight gain. He is catching up! Despite a great weight gain, I did get more homework. Puree meat. Sigh.
The GI appointment was the most interesting. I've been to a lot of GI's. Zachary's other specialists wanted us to see a GI. So I've been searching for one that was willing to work with us to help Zachary become an eater, better manage the reflux, and get rid of the g-tube. I ran through Zachary's medical history up to present day and she was wondering why I was there (since he is eating and not vomiting). I did not let her know that I was there because I felt forced to be but simply that he's had GI issues and that I thought we needed someone to monitor him.
I was very honest though and let her know that I've met with MANY GIs and could not find one who wanted to help Zachary learn to eat and was interested in controlling the vomiting. It must be a very small field because she knew everyone we met with. It was strange for me to discuss my disappointment of her colleagues with her. I liked her a lot though.
She examined Zachary and told me he looked great! What did I need a GI for? She said I must be doing a great job. She apologized on behalf of her colleagues simply stating that GI is such an art form and sometimes doctors get stuck with their way of doing things. She also noted that she will appear to be the hero because all that is left to do is take out the G-tube. I wasn't ready to do that just yet, but when the time is right and our nutritionist and pediatrician are supportive we will go back to her and she will take it out. I do find comfort in knowing we have a GI who I can call with any questions, in a particular one who thinks we are doing something right. I was pleased to get some positive feedback.
Our favorite nurse had volunteered to work Saturday night this past week and we were looking forward to a night out. It was disappointing that something came up and she had to leave early. I think this would be a disappointment to anyone with children, but the thing is - we can't reschedule. We cant just get a baby sitter for next weekend. Under normal circumstances we may have grabbed our kid and gone out for a family dinner. But it is flu season. We do not want to risk the flu. So we stayed home and consoled ourselves by letting the dishes sit in the sink while we watched TV - which we hardly ever have time do. It is 3:00pm the next day and the dishes are still there.
Zachary had five appointments last week. He had physical therapy, speech therapy, a meeting with respiratory therapy, nutrition appointment, and we had an appointment with one more gastroenterologist.
Zachary works hard in PT. Lucky for my the PT does not let me participate in the sessions any more. I am too much of a distraction for Zachary. I spend five minutes with her at the beginning of the appointment and five minutes at the end getting my homework assignments. The PT and nurse handle the session. Don't worry, I do not mind having an extra 50 minutes to myself!
I have to be involved in ST. This week Zachary bit an apple. Like I said last time, progress is slow. We gave Zachary lots of praise for using his teeth. I feel ridiculous sometimes, but progress is progress no matter how slow. The nutritionist was amazed with Zachary's weight gain. He is catching up! Despite a great weight gain, I did get more homework. Puree meat. Sigh.
The GI appointment was the most interesting. I've been to a lot of GI's. Zachary's other specialists wanted us to see a GI. So I've been searching for one that was willing to work with us to help Zachary become an eater, better manage the reflux, and get rid of the g-tube. I ran through Zachary's medical history up to present day and she was wondering why I was there (since he is eating and not vomiting). I did not let her know that I was there because I felt forced to be but simply that he's had GI issues and that I thought we needed someone to monitor him.
I was very honest though and let her know that I've met with MANY GIs and could not find one who wanted to help Zachary learn to eat and was interested in controlling the vomiting. It must be a very small field because she knew everyone we met with. It was strange for me to discuss my disappointment of her colleagues with her. I liked her a lot though.
She examined Zachary and told me he looked great! What did I need a GI for? She said I must be doing a great job. She apologized on behalf of her colleagues simply stating that GI is such an art form and sometimes doctors get stuck with their way of doing things. She also noted that she will appear to be the hero because all that is left to do is take out the G-tube. I wasn't ready to do that just yet, but when the time is right and our nutritionist and pediatrician are supportive we will go back to her and she will take it out. I do find comfort in knowing we have a GI who I can call with any questions, in a particular one who thinks we are doing something right. I was pleased to get some positive feedback.
Thursday, January 24, 2013
Lots to catch up on
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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