10/7/18 BMT Day +158 Low Blood Pressure

We’ve had quite a roller coaster ride since I published my update about 24 hours ago. Last night Reese’s blood pressure dropped too low. She bottomed out at 78/41. It’s not that the number is so ridiculously low for healthy Reese. Reese, like her mom, naturally has very low blood pressure. But Reese is not healthy Reese right now… getting there, but not. And it was only a couple weeks ago that we were battling 130s. As you know, Reese is on many blood pressure meds. Three to be exact. All of these were removed last night in an effort to bring Reese’s blood pressure back up, without success. She was given fluids and watched carefully, BP every hour throughout the night. Interestingly, her heart rate was also very low, her weight was up a lot, and she didn’t have a fever. Then, to spice things up a little bit more, all of her counts dropped over night. Her hemoglobin dropped too much, to 6.2. The doctors feared she had a GI bleed, a central line infection, a different infection, or a heart problem (this was the least likely culprit because it wouldn’t come on this fast and she had a clear echo recently.) Cue a very stressful day of NPO (that’s NO FOOD. Yep, how do you think Reese felt about that? As she should.) and tests. Just another day at the BMT unit, this stuff is not for the faint of heart.

So how did the day end? The docs have pretty much ruled out GI bleed (thank god, this would be a flare. Her gvhd has truly been so under control, this would have been devastating.) Her infection results are still pending. Her BPs were better while she was awake (though still much lower than “usual”) and she held onto the blood they gave her in the early morning hours- also a great sign.
Reese ended the day with a HUGE meal when they lifted her food restriction (when they decided that no emergency action would need to be taken that would require fasting.) This meal included all her favorites: carrots, avocados, and applesauce. Yes, three things together, this was a first and a step closer to a REAL meal.

Reese fell asleep not too long ago and her blood pressure has already drifted back down to 80/44. They want it to be above 80, so right there. The doctors are still unsure what is happening, but here is the best case scenario: We know that Reese’s gut is healing, and we know with the ileus getting better, that it is healing even more, as of the past couple days. As Reese’s gut heals, it can absorb medicine better. (We know that not everything we gave her by mouth was absorbed.) So, we went down on steroids on Thursday to 0.9, around the same time the ileus got better. But her BP meds stayed the same. So now her gut is absorbing more of the meds AND the cause of the high BP, the steroids, are being weaned. It’s possible that this is why her BP dropped, though it should not have been so dramatic and fast. As for her hemoglobin and basically all cell lines dropping, perhaps it is the ganciclovir, the count killer (her new CMV med.) It would also be too fast for that though, too. But right now, it’s possible that everything is ok (and actually better, because her gut is better and her steroids are down!) Time will tell and we will learn more tomorrow. I am hopeful that the docs will land on my above theory, and we can move onward and upward.

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