Ajay was able to make weans on his BIPAP over the last 3 days by 5. (started at rate of 20, then 15, etc. ) and yesterday was EXHAUSTED. His little heart and lung was working so hard to compensate for the pressure, that he slept the entire day and night, requiring more pressure to inflate lung. Its not great news....pointing to our first week of "trial" on high flow oxygen during the day and BiPAP at night. So we are through week one with not much progress in that we will need to either wean slower, or go back and start again and wean from there. When Ajay has a hard time breathing after trials, it tells us he requires more to breathe, in which he doesn't make progress moving off the vent.
If Ajay doesn't make more progress in the next week, we may be looking at a trach. I am not in favor of that procedure, but will do whatever it takes to keep him alive and comfortable. The BiPAP doesn't provide long term pressure as Ajay would need to support his lung. Its used temporarily then weaned to high flow and then to a regular nasal cannula oxygen tank. I am hopeful that he can tolerate a week of progress, even if so small, to avoid another surgery. His diaphragm may be the cause of the ability to inhale and exhale with good breath sounds. If we decide to go back in to fix the diaphragm, it will be another 4 weeks to get him where he is today. The docs and surgeons don't want him intubated, and sedated and are avoiding it at all costs.
That being said, with all the pressure to keep his lung inflated, he has been fed through an nj tube going through his nose to his intestine. We decided that if we can go home, without a trach, we would require Ajay to live with BiPAP day and night. The device is less invasive, but also prevents him from eating through his stomach as he did prior to admission.
So, we decided today that he would have his current gtube converted to "NJ" 9Through the jejunumn in his intestine bypassing his stomach) so that we can continue to feed him through his intestine with good nutrition. When he is on BiPAP and CPAP, its impossible to eat through his stomach without vomiting. We are still having trouble with vomiting even through feeds in his intestine, so we have not figured out why that is occurring. We started motility drugs to help move stomach secretions faster through his intestine to avoid or at least decrease vomiting bile. I am hoping that once the tube in his nose is removed, it will decrease the irritation and also decrease gagging and vomiting. The procedure only took 45 minutes to convert, with minimal anesthesia and no intubation.
I will post later today to report how he tolerated the new feeds on a more permanent basis.