Please be praying for Carson's G-tube

Poor little guy is such a fighter and doing fantastic on his CPAP trials. I was truly impressed with how well he did. Rarely did he have any desaturations even when he was upset. However, his G-tube began leaking last night. He lost a portion of 4 of his feeds, so he never really got a full belly. They replaced the G-tube and sutured it in place this morning and he had one feed with no leaks. However, if he has anymore leaks, they will need to take him to surgery and do a more invasive procedure to try to fix it. If he has to go to surgery, we lose a lot of the progress he has made in the last two weeks on weaning to CPAP, because he would be under anesthesia and sedation. We are praying this will fix the problem, but if it is going to continue to have issues with leaking, we can get it surgically repaired now rather than a couple more weeks into the weaning process.

It also is difficult for him to gain weight when he isn't getting a full feeding and they are monitoring his weight to ensure he isn't working too hard to breathe. In regards to CPAP trials, he has moved down to a PEEP plus of 2 (he was at 4). His PEEP is still 6 and rate of 2. During his trial, they will actually do full CPAP and take away all of his pressure support except for PEEP of 6 and his oxygen (which is still on about 30-35%). Then they will increase the amount of time on full CPAP until he is on it completely, hopefully in the next few days.

I had some questions about the trach collar, so for those interested here is my understanding and I am not as familiar with this so it may not be perfectly accurate. Once he is on CPAP, then the goal is to wean to a trach collar which basically just provides humidity for his airway. You can also attach oxygen to the trach collar so he could continue with that as needed. At that point, he would not have any pressure support. Once he gets on CPAP he will only have a PEEP of 6, so it is weaning off the PEEP to get to a trach collar. As he gets better, then they would be able to wean the oxygen until he can be on room air. He would still have his tracheostomy, but a lot less airway support. He will need to be off oxygen and all airway support for awhile (at least 3 months from the individuals I have spoken to) before considering removal of his tracheostomy.

Kellen is doing very well. Liz and Preston are troopers. They have been so patient throughout this process.

Thank you for your prayers! Have a good Sunday.

Posted by Sarah