Today's Heart Catherization

Lynnea made it through yet another heart catherization without any problems during the cath itself, though she did spike a fever afterwards, and no one is really sure why. I'm not sure if she is still running a fever (it was still above her normal temp the last time the nurses checked, but "technically" it wasn't a fever -- probably because she was given Tylenol; we'll see what it is after the Tylenol wears off).

The first issue of concern was her pulmonary vein stenosis. For the past week and a half, or so, at home, Lynnea's sat's have been a bit low, her heart rate has been high, she has been wheezing (and has not really been clearing after her nebulizer treatments), she gets sweaty even when she's not upset, and she hasn't been tolerating her feeds as well as usual. These symptoms typically point to some sort of a cardiac problem, and these are all symptoms that we have seen a few weeks after each of her cutting balloon dilations, so it was no surprise that her pulmonary vein, once again, had narrowed and needed to be ballooned open again. This is the third time that Dr. Gruenstein has performed the experimental cutting balloon dilation on Lynnea. Prior to the first dilation, her vein had narrowed to 1 millimeter; after the first dilation, it opened up to 3.5 mm. One month later when she had the second dilation, her vein had narrowed back down to 2.4 mm, and after the second dilation it opened up to 3.5 mm again. Today her pulmonary vein had narrowed down to 2 mm, and after the dilation it only opened up to 3 mm. So, Dr. Gruenstein isn't sure if this is really working, considering that we don't seem to be making much progress. He's not willing to give up on it yet -- the cardiologist in Cleveland who has done this on three or four other patients warned that it typically takes three or four times before any real progress is seen. So, Dr. Gruenstein plans on trying at least one more time before giving up on this process.

The second issue of concern was her aorta. The spot that was stented during her last cath still looked pretty good, though Gruenstein attempted to open it up a little bit further by sending a balloon through it. The real concern was an area near the stent that had narrowed since last time, and because of its location, cannot be ballooned or stented open. To tell how bad narrowing is in the aorta, they measure the gradient of blood flow through it. A high gradient is bad, a low gradient is good. Prior to stenting last cath, the gradient across the narrowed area was 40. After stenting, it was 10, which is good. Today the gradient through the stent was still 10, but the area near the stent was up to 40. Dr. Gruenstein feels that, because he can't balloon or stent the spot that is narrow, she will probably need more surgery to repair it sometime in the near future (he was pretty vague about when he thought this would need to be done, and when I talked to Dr. St. Louis briefly in the hallway today, he hadn't had a chance to look at the cath results yet).

The third issue was her B-T shunt. Just like last month, Dr. Gruenstein feels she is outgrowing it and it needs to be replaced. Again, we're hoping that Dr. St. Louis will be able to replace it and address the issues with the aorta at the same time.

Due to the concern about the aorta, Lynnea is scheduled to have a CT scan in the morning to get an even better picture of things. Because of this, the doctors decided to keep her intubated and sedated until morning. As has become the pattern with Lynnea, keeping her sedated has been a challenge. She has built up a bit of tolerance to many of the sedatives that they give her, and manages to wake up even after she has been given significant doses of medication. Since Fentanyl, and Versed were having very little effect on her (she was awake and trying to sit up despite the several boluses of each she had been given), she was switched to Ativan, which so far seems to be doing the trick. Hopefully she will have a peaceful night, and be able to go home sometime tomorrow.