This week, an ENT was brought in to look at Williams upper GI and see if he could see anything that would explain the problems he is having with swallowing and the sound he makes when breathing. The ENT found out that his left vocal cord is paralyzed. This has 3 concerns for the doctors: it explains the striated breathing to an extent (the striation is also from the tracheomalacia- his trachea collapses on itself when he gets upset - it's because the cartilage in his trachea isn't fully formed. It will develop over time and is typical of atresia cases), another concern is that the vocal cords act as a 2nd means of defense for fluid to stay out of the lungs. If one is paralyzed, there isn't enough strength to push the fluid up and out of the airway. The third concern is this is the reason he has a weak cry and could have a raspy/softer voice as he gets older. A speech therapist can help with that as he develops.
They aren't sure if this is congenital or tied to the atresia, as it happens sometimes in newborns. There is a chance it will correct itself and if not, the right vocal cord is already starting to compensate for the left one not working.
After the ENT looked, they wanted to do a swallow study as well. That's a real time x-ray and they have him drink from different bottles with different consistencies to see if something would help prevent aspiration. Unfortunately, regardless of the bottle and the consistency, William aspirated on everything. This means that, at this time, it's not safe for him to drink orally. An OT, PT, and speech/feeding therapist will all work with him to develop the muscles necessary to eventually be able to take at least some of his milk orally. (This is only a concern for nipple and sippy cups but not for normal cups.)
The solution for now is a Gastronomy Button (or g-button) which is a tube that is placed inside the stomach and has a button that is secured in the skin of the abdomen. It allows William to be fed directly into his stomach without the need for the feeding tube. This will stay in place until he is taking all of his food orally. The g-button can stay in for years, so it's the best solution for him to be able to come home while he is in therapy for oral feedings.
So, William will be back in surgery on Tuesday for the insertion of the g-button. The surgeon is wonderful - he's the same surgeon who did the atresia and fistula surgery. It's supposed to take about 15 minutes for surgery, but he will need to go under anesthesia again which means he'll need the ventilator again. Since he's been on that twice, and they know what worked the second time to have him off of it, hopefully those steps will work again.
Once William is off the ventilator and doing well, and his g-button is working and he is taking his feedings that way, we can bring him home!! (I'll admit, I'm a little scared because I feel like he's so safe in the hospital and we have all these wonderful people helping with him, but I can't wait to have him home!)
I'll try to post an update after his surgery this week, thank you for all the prayers that have already started and continued for William and our family.
Love,
Emilie
Daddy, Norah, Bella, and William
Mommy, Norah, Bella, and William
Sweet William
Norah, Bella, and William (The girls have been amazing at the hospital - and they love to go see William!)
Sweet baby boy - he loves his pacifier - which is a very good thing!
They aren't sure if this is congenital or tied to the atresia, as it happens sometimes in newborns. There is a chance it will correct itself and if not, the right vocal cord is already starting to compensate for the left one not working.
After the ENT looked, they wanted to do a swallow study as well. That's a real time x-ray and they have him drink from different bottles with different consistencies to see if something would help prevent aspiration. Unfortunately, regardless of the bottle and the consistency, William aspirated on everything. This means that, at this time, it's not safe for him to drink orally. An OT, PT, and speech/feeding therapist will all work with him to develop the muscles necessary to eventually be able to take at least some of his milk orally. (This is only a concern for nipple and sippy cups but not for normal cups.)
The solution for now is a Gastronomy Button (or g-button) which is a tube that is placed inside the stomach and has a button that is secured in the skin of the abdomen. It allows William to be fed directly into his stomach without the need for the feeding tube. This will stay in place until he is taking all of his food orally. The g-button can stay in for years, so it's the best solution for him to be able to come home while he is in therapy for oral feedings.
So, William will be back in surgery on Tuesday for the insertion of the g-button. The surgeon is wonderful - he's the same surgeon who did the atresia and fistula surgery. It's supposed to take about 15 minutes for surgery, but he will need to go under anesthesia again which means he'll need the ventilator again. Since he's been on that twice, and they know what worked the second time to have him off of it, hopefully those steps will work again.
Once William is off the ventilator and doing well, and his g-button is working and he is taking his feedings that way, we can bring him home!! (I'll admit, I'm a little scared because I feel like he's so safe in the hospital and we have all these wonderful people helping with him, but I can't wait to have him home!)
I'll try to post an update after his surgery this week, thank you for all the prayers that have already started and continued for William and our family.
Love,
Emilie
Daddy, Norah, Bella, and William
Mommy, Norah, Bella, and William
Sweet William
Norah, Bella, and William (The girls have been amazing at the hospital - and they love to go see William!)
Sweet baby boy - he loves his pacifier - which is a very good thing!
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