I just spoke with Jac's doctor and we are formulating a plan for getting him back to where he was 18 hours ago and then staying there for a while.
Currently he is in the NICU on a CPAP which is is several steps back from where we were yesterday. What precipitated the crisis was the move off of the high flow nasal cannulae to low flow and the removal of the study gas all at the same time.
So the plan is to put him back on the study gas (which may be NO2 which may be helping him) attached to his CPAP. Then wait for a few hours and make sure he continues to be stable. If he stays stable then we will move him back to the high flow nasal cannulae with the study gas attached and watch him there. If he stays stable there then we wil move him back to the ICC and then start praying. I don't believe in god but I will find something to pray to. After that we would leave him on the high flow nasal cannulae for at least a week, maybe longer, and allow him to use his energy to grow and eat rather than having to work so hard to breathe. Then at some point in the future we would try the low flow nasal cannulae again (this time more prepared for failure I hope).
The timing of all each of these changes is negotiable. The doctor has assured me that if I am not comfortable with what they are proposing that we will work together to find a happy medium we can agree on. This makes me feel much better as I hope that I am the best advocate for our son. He is so little and fragile I want to protect him - and I want to help him get better and grow - and I know the doctors want the same thing but it feels like they are a little more cavalier than I would like them to be. But, as the doctor pointed out, if we had not moved him to low flow we would not have known that he could not tolerate it. All of the signs from his breathing (at least in the doctors opinion) pointed to him being able to tolerate - although my instincts told me he could not.
The CPAP is great in that it allows him to do less work to breathe but it has the downside that it fills his tummy with air which makes it harder for him to process the food we are putting into his tummy with gavage feedings (directly into his tummy). Because of this the doctor feels some urgency to get him back to the high flow nasal cannulae which does not have that effect. I am more hesitant to take him off the CPAP after the last 18 hours which I know have tired him - his little body does not have any reserves and he was really struggling. The doctor and I have agreed to wait until this afternoon and then reevaluate how he is doing. He agrees with me that it is important to let Jac conserve his energy and recover from the last 18 hours. So - we will see what happens this afternoon.
He is going to go back on the study gas fairly soon - but that should not wake him up or upset him as it is a very small amount of gas added to his CPAP.
He is back on 21% oxygen on his CPAP so it is providing pressure to help him breathe but no additional oxygen beyond room air.
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What a night. Jac is lucky to have such strong, devoted parents. I know it sounds silly to say, but do try to take care of yourselves and each other the best you can.
ReplyDeleteI think Taj is right about being an advocate for Jac - I bet no one spends as much time just observing him as you do, and that information is useful to the doctors.