Frightful's inability to get off of respiratory support for the last 3.5 weeks, even after his plication, has been a great cause for concern to his medical team. There have been small improvements, but they have never been substantial enough or lengthy enough. If anything, the improvements made after plication have only served to emphasize how dire his respiratory condition was.
This has made it increasingly obvious this week that the likely source of his respiratory needs is, in fact, a profusion problem. Today's echocardiogram (heart ultrasound) confirmed this suspicion. It seems as if Frightful's right lung is "taking" an excess share of the profusion to both lungs, which adds to the list of reasons the left lung has been struggling especially. However, the right lung isn't even getting enough profusion.
We had been so thrilled with Frightful's cardiac function up until today's echo, because it always looked so good in his echos. He had a lot else going on too, but we really thought the plication would be the answer to his respiratory problems. We (and his medical team, initially,) thought his heart repair had gone so well and was working so well. So to hear this news is really discouraging.
So tomorrow morning (at 10:30) Frightful will be going in for a "heart cath" to further explore his cardiac function problems. He will be sedated and a thin tube (catheter) will be inserted into an artery in his groin and threaded through his blood vessels up to his heart. They will probably release a dye and take a lot of photos and measurements to measure blood flow and pressure and get a better idea of what's wrong.
The doctor who will be performing this procedure told us today that we're hoping this is a "plumbing" issue because those can be fixed, and not a "motor" issue. They might even be able to fix some of the "plumbing" issues tomorrow, during the cath, such as ballooning a narrowed artery, etc, should those prove to be the problem.
The reality of how serious a condition HLHS is has hit home tonight, perhaps in a new way. I, at least, was overconfident in his repair. I thought (4 weeks and 2 days post-op!) that his heart would be fine! We were past the worst! But his poor half-a-heart will always struggle to keep up with its too-heavy workload and we probably need to expect many more future complications.
It is good to hear this news insofar as we have a reason for his very slow progress up until this point. It will be good to have even more answers (we hope) tomorrow. But it is hard. Our poor baby has been through so much and it is so hard to send him off to yet another procedure, even though we know it's necessary.
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