Pierce has been off cpap for almost 5 whole days. He is doing so good with it. Now the question is will he stay on CPAP or eventually tire out and be back on the vent. We have been told that he will need a trach even after weaning off the vent. I dont understand why. I know his lungs are horrible and severely damaged but he is doing so well with CPAP and we are all surprised. His CPAP settings fluctuate between 8 and 9 but he is doing it all on his own which is something that I find truly amazing. His feeds are going well for once and he is so close to getting off TPN. He is at 13cc every 3 hours of 24 cal/oz pregestimil and is back to gaining weight. He is up to 4lbs6oz and doing good. We have his reconnection surgery scheduled for January 4th.
Lincoln is doing really well at home. He is doing better with his reflux and things seem to be going better. He is sleeping alot more and less fussy overall. He loves watching his sisters play and run around the house. They sing to him and read to him and help out with floor time. He gets so upset when its bedtime for them and all the entertainment his sisters give him has to stop. The girls are great with the him and really help out alot.
Kennedy has been really angry lately. We are trying our best to help her in any way possible. I sat down with her and found out one of her major problems. She wants Pierce home and its really bothering her that only one of her brothers is home. When asked what she wants for christmas she tells you Pierce to be home. We know he wont be home by christmas but hopefully soon and without a trach.
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Dakota was trached from a CPAP of 7. Usually our NICU extubates onto a CPAP of 7 and moves down from there. Dakota was extubated onto a CPAP of 9 once and 10 the other time. She made it to a CPAP of 7 once but it was clear that her lungs were still not healing. She was still deteriorating over all and it would be many months before she was ready to be on straight oxygen. Our neonatologist had never before, in her 20+ years of working NICU, trached a baby that was already on CPAP.
The trach usually makes breathing easier, it lowers their oxygen needs and decreases their need for support because it by-passes the upper airway that can so often cause problems. If they do trach him while he's on CPAP then he won't need a ventilator there is a special CPAP cap that can be used with the trach that allows you to not need the ventilator (we never got to use this option as Dakota came down with MRSA pneumonia and it greatly damaged her lungs, leading us back to moderately high ventilator settings).
The trach is far scarier than it is in reality. Don't give up hope yet. He's made it to CPAP so he IS making progress. Until you schedule the surgery, heck, until you have the surgery, nothing is certain.
Our son was trached as well. He had grade III subglottic stenosus from long-term intubation so he was trach dependent, although no longer oxygen dependent, until he had surgery for the stenosis just before his third birthday. He was on the ventilator for almost two years, though, before tolerating straight oxygen. Once he had the surgery for the stenosis he needed oxygen with one more illness shortly after and has not needed it again since. He is 6 1/2 now. The trach was extra work of course, but not nearly as scary as it sounds.
So glad to hear the boys are doing well!!
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