Going back into surgery tomorrow to re-tap the lung. A pigtail drain will also be left in place and there is talk of possibly tapping the heart fluid as well, however cardiology will make the final decision about that in the morning The fluid has increased dramatically and is now being called quite severe. Damien is also showing some signs of respiratory distress, though not terribly so. He is working a bit harder to breathe, its become harder to hear his breathe sounds when listening to his lungs (upon the drs examination) and he has developed a sputtering cough. He is being made NPO (no food/drink) starting at midnight with hopes of getting him into the OR tomorrow, but since the xray wasnt read until after hours, it is not definite he will go tomorrow, unless of course he worsens overnight, in which case it will be emergent. The nurses are keeping him on the monitor and the pulse ox all night but this momma wont likely get much sleep as I keep a watchful vigil on my munchkin. Also, Dr Mistry stopped by tonight, even though she is not on service for the inpatient kiddos (have I mentioned how much we adore her?) and we talked extensively about, well about everything thats been going on over the past few months and what we can or cannot do at this point. She agreed 100% that this is not the end of the road for Damien regarding transplant but that for now, as much as we want to move forward with such, we need to be very cautious and proceed slowly. She was along for the ride during our last transplant experience and she knows how scary it got for everyone involved-least of not, Damien. She said while she could sign off on it and give the green light she feels in her gut that it is not the right choice and that she really wants to do everything in her power to figure this fluid issue out, if possible, before moving forward. Her concern is that during transplant they give TONS of fluid to prime the kidney and that may just be too much for a heart and lungs that are already in trouble. He will also be on mega doses of immunosuppressants so his ability to fight against anything that may creep up (i.e. pneumonia) would be significantly less. Almost nil in fact. She also mentioned that going into any surgery you always want to be in the best shape, healthwise, possible to minimize complications. She said she feels in the pit of her stomach that sending him in for a MAJOR surgery at this time could in fact put him in a worse position with his health than he already is and that she cannot do that in good conscience but the minute hes stable enough she wont let 2 days pass before moving him into transplant. I trust Dr Mistry 100% (or as close to that as one can I suppose) and know she has nothing but the best hopes and intentions for Damien, and all her patients. She truly CARES for these kids and it shows in her eyes when she talks to you. As she said goodnight to Damien she left me with this time-we just need some more time. So we wait and we pray and we continue living every day to its fullest because no matter what, we never want to look back with regret and we never want to miss a single second of the joy that comes with simply being Damiens parents.
Posted on: Thu, 03 Jul 2014 02:09:52 +0000