Today was an extremely rough day. When we arrived this morning, we were told that Patrick had spiked a fever overnight. They had started him on antibiotics and given him Tylenol to knock out the fever. His heart rate was running 170s to 190s. The surgeon had looked at the echo and, not only was there decreased heart function, but his right ventricle was dilated. This was evidence that it was having to work extra hard trying to pump blood into the lungs. They scheduled him for a cath this afternoon to look at his distal branch pulmonary arteries and see if there was any narrowing they could stent or balloon open. We knew it was fairly serious when they told us this simply because there was no way they would do a cath with a possible infection unless it was absolutely necessary.
They put him on the vent and under general anesthesia. As his surgeon described it, his right PA "looked better than it had any right to look." Although still small, there was no narrowing at any point past the patching he had done a month ago. There had clearly been growth since then, so he was quite pleased. The left PA looked narrowed and possibly folded or twisted. They ended up putting in two overlapping stents to open it up. The doctor had been unable to get any pressure readings pre-procedure, but post-procedure the pressures were high, indicating that the pressure was the same as the high pressure in the right ventricle, which was good. The bad news was how high the pressure was--90%. Normal is 20%. Mira is 50% with her medication. Yeah. It's that bad. It will take a few days to see if the stents will decrease the pressures. If not, there are no more surgical interventions they can use, but they could put him on PAH (pulmonary arterial hypertension) medications--you know, what Mira takes. I mentioned to the cath doctor that Mira took them and he mentioned he would follow up with her doctor because if she has stiff arteries that responded well to the meds, Patrick might as well. For now, he's back in the PICU. He's still on the vent--no word on how long they want to leave him on it. Given the long holiday weekend approaching, I imagine there is nothing but observation happening this weekend.
Ultimately, if they are unable to get his pressures down, his right ventricle will continue to dilate until it gives out and then we are at the transplant point. Somehow, this feels more real than it ever has, and I am struggling to absorb and process all of this. I will have plenty of time to think about it as I head for Tennessee tomorrow to pick up Mira. I am hoping the scenery change and the chance to see some relatives I almost never see, along with more mommy/Mira time, will help me cope. It will at least provide me some time away from the hospital--of which I am truly in need.
Please, keep all of us and the medical staff in prayers. It looks like this is going to be a very long slog, and I have no idea what is coming next.
