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Wednesday, May 30, 2012

Wednesday May 30, 2012

 Ajay did very well with his minor procedure on Friday, and my apologies for a delayed update. Ajay although pulled through fine with the gtube conversion to gjtube, he has been continung to vomit. As some of you know, this has been an ongoing issue since the end of our last stay here at the hospital last Sept. Throughout all the trauma and surgeries, no one has ever really addressed this issue, because the issues at hand were always his heart and lungs. Now that we are in a position to wean on the vent for the next month or so, I felt it was time to address this as well as his hernia. He has very painful bowel movements, problems with constipation, regularity, etc. as well as intermittent vomitting at any time of the day. After a couple of days of "observation" by staff, it was finally decided that we would have a swallow study done. It was completed today at 3 pm, and did very well. This was only one of many phases of tests but the obvious test is out of the way. He aspirated only a tiny bit with water, and ate and tolerated the necter and honey thickened liquids, then a graham cracker without any problems. 

Moving forward, but as slow as can be. We have only been able to wean by 2 since over last few days on pressure, and rate has slowly decreased. Ajay didn't tolerate wean at first so we had to ride out the last 3 days to see how he would handle it. And like Ajay does, he comes back to fight :) He was able to keep breathing without going backwards, and was able to maintain his settings. So yesterday we were able to make the first wean on pressure support and did tolerate it without any issues. So although extremely slow, Ajay is holding his own. At this time, we are not doing anything about his diaphragm because of risks involved in intubation and sedation. If he can breathe and tolerate weans from the vent, then we are going to stay with that plan. If he shows signs of needing the diaphragm, then we will address it. Remarkably, he is plugging away not needing much support from the diaphragm. As usual the docs are amazed at what Ajay can tolerate and still remain with decent oxygen levels, heart rate and respirations. He does have his moments but is able to come back on his own without too much interventions. We often wonder how low his oxygen actually was in China, since he seems to be able to function here with low levels. His body has compensated for so long and now has to readjust to yet newer standards since loosing his left lung and diaphragm. Its still a mystery how he is able to self regulate. However it happens, its Ajay's way :)


  1. I'm pretty sure that his O2 was in the 70's, dipping lower when he was sick or it was overcast (it's amazing what weather does to heart kiddos!). What are his levels now?

    Ajay is amazing. Thanks for sharing his little life-miracles with us!

  2. Continuing to pray for Ajay!!!! He is such a fighter!
    Romans 8:28!

  3. Hope to hear another update soon. It's been too long. I'm sure you're very busy with all of the other boys too. Many prayers for all of you, Carrie. You know I love you. Always, Jane