Its been a long week, not only waiting but praying for an answer. Ajay was not making progress this week, and we once again had to decide on several things. Do we fix his diaphragm that had come undone last week, fix his feeding issues from gtube to GJ (feeds from stomach to his intestine) long overdue inguinal hernia and tracheotomy. All procedures require sedation, intubation/vent and life altering decisions for Ajay and his overall quality of life. Because of his lack of progress on the vent settings, it was brought up on Thursday to possibly trach him. For me, it was such a last resort and that both Paul and I wanted to explore all other options first. A tracheotomy is such a long training process, invasive procedure for Ajay, sedation/recovery, and 3 more months of being in the ICU. It just seemed like we were there yet, and it was painful to think about....So the decision was to continue to wait was now coming to an end without a goal in site. Ajay although happy as could be, still required too much pressure support for his lung to be taken off the cpap and bipap/vent. It has been 5 weeks with no progress on current vent settings. ( A tracheotomy would enable Ajay to move around but also give him the pressure support he needed, eliminating the pressure to go through his airway, making it easier for him to breathe. )
After long discussion with all respiratory therapists, and the cardiology team, it was decided that we would give Ajay 2 more weeks to make "his" move and guide us through these next few weeks. Everyone was in agreement. We would wait for Ajay to tell us what he needed.
Early Friday morning, I came in to see that Ajay was on High Flow oxygen with a nasal cannula at 10Liters of Flow at 50% support. His oxygen was stable in the high 70's and he was playing again with his toys sitting up. I asked what was going on and the respiratory therapist said, "were going to push him" and giving this a try to see if Ajay can pull his own, and we can see quickly if his lung can handle the pressure in a different way AND to see if he really needs the support of the diaphragm. (through his nose vs wearing a huge face mask). I sat and watched history being made as our little Ajay TOLERATED the high flow oxygen! Time passed, tolerating 1 hr, then 2 hrs, then 3, and then I said lets give him a break. They went back to the mask soon after I voiced my concerns, fearful of pushing too much and too fast. (pushing the lung to work too fast on its own could cause collapse within the next 24 hours) He slept for 2 hrs, and back on the high flow settings. He tolerated another 3 hrs and was happy as could be being free from that mask. He was able to drink water from a cotton swab and didn't get sick from swallowing. (another small miracle) He rested well that night as he worked hard most of the day. I stayed with him 23 hours straight to see if his lung tolerated the high flow. At 545 am, his xray was clear!! I couldn't believe it! There was no evidence at all of collapse! (Talk about a hail mary pass!)
Since Friday, Ajay has been on high flow, and talk of a trach has not been brought up. As of now, we are not going to repair his diaphragm, feeds, or hernia, until its absolutely indicated. He is doing so well at this moment with the pressure being decreased, that we don't want to rock the boat. We are definitely not out of the woods, but are heading in the right direction.
Ajay has once again proved docs wrong in their predictions....generally patients who are on such high settings of CPAP and BIPAP don't go directly to high flow without weaning several weeks in between,,,,Ajay basically jumped from one machine to the other without a bridge!
So where do we go from here? Super small weans from high flow pressure and oxygen and let the lung heal and continue to get stronger. It was asked if we should repair the other things, but we thought that we would see how Ajay handles things first. The surgeries can always be done, but there is no urgency at this moment. IF Ajay starts having trouble breathing, or shows signs of CHF or collapse, then we will have no other choice but to go ahead with the tracheotomy.
Ajay's brothers came today to visit, and when he saw them enter the room, he let out a pleasurable scream! It was priceless!!! He signed all of their names and "brothers."
I believe Celion Dion said it best, "The Power of Love..."
We hope and pray that Ajay continues to tell us what he needs for his best quality of life and happiness.