Back and forth yesterday. From one perspective she was more playful - even got a smile out of her as mom posted. She played with her blocks and even had two wagon rides. On the other hand she slept most of the day and had a very clear distended belly. The few hours she was up she was uncomfortable and kept trying to sleep on her side, which isn't like her at all. All we could do was wait and sit with her.
We gave up at 1AM - she was still awake but only barely, and they were about to give her Atavan again to help her sleep. Come morning we got some unfortunate updates.
Mom came over early at 7AM and found Dr Van Burgen and Dr El Zein doing an unltrasound on her belly, which is still distended. It is fluid, and it is contributing to her vomiting and overall uncomfortability. Her left lung has collapsed, also from fluid, if I am understanding things correctly. The hardest news, though this must be taken as only a theory at this point, is that there is a pressure gradient between her two atrium chambers in her heart, which *may* be contributing to extra pressure in her brain, kidneys, liver, etc. Tomorrow evening there will be a discussion on this point with her whole team, and the recommendation *may* be to have an additional immediate surgery to widen the hole (ASD) between them; essentially creating a single atrium. Having two upper chambers at this point, now that she has completed the Fontan, doesn't really make any difference. If you follow that link for ASD you will read about a common defect that normally would be repaired with open heart surgery. In Muriel's case, because we have closed off the tricuspid valve (you will have to go back to the beginning of the blog to read about that), we actually widened this hole on purpose, as it is the only way for blood from the lungs to return to the body.
There is some speculation that part of her irritability could be headaches. At least for today we are going to treat this with drugs to keep her relaxed (Atavan just now and another phenobarbitol later - not sure which one was ordered).
She *may* be getting a chest tube re-inserted to drain this fluid. I asked about draining by syringe, but Dr. Van Burgen gave a host of good reasons to avoid this, though he has done it in the past. They are upping the frequency of her diuertics to try to get rid of it that way, which will swing our other chemicals the wrong way, and put us back to balancing supplements in some way that she won't throw them up. If we don't see some results in the next few days, the tube will have to go in.
Lots of tears this morning - but a good perspective has been offered. Megan asked "how worried should we be?". That's a tough question for a doctor to answer. The long and short is that we have some problems to solve, but they are all solvable problems. We would need to be far more concerned if her challenges - as they are for many children in her situation - were cardiac related. Her heart is actually strong, there is good output, and what the surgery intended to accomplish is working exactly as it should. Fixing pressures, finding and solving fluid issues, and her chemical imbalances are all things that are frustrating but can and will be resolved.
Not sure how long we might be here. I'll hold off speculating on that until we have a better understanding of the scope of the resolutions we decide on.
No pics this morning, sorry. All three of us are unphotogenic at the moment.
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