Big news at the front end:
Annika is back home. Pale-skinned and mudbrown smudges under her eyes, but home.
Here's how this latest episode played out:
She started bleeding Wednesday afternoon, and Jörg took her to the ER with the understanding that I would stay home, pack, and reassure Frankie. After I got her to bed, I would head to the ER to trade off with Jörg while our neighbor stayed with Frankie until Jörg could return home. However, when Annika heard that she was being transferred to Chicago, she requested that her Daddy accompany her instead of me. It took Jörg all of about 3 seconds to decide to cancel his classes so he could go with her. Hey, it was the last day before Spring Break, traditionally not an educationally effective day, anyway.
Children's in Chicago sent their helicopter to pick her up from our local hospital and deposit her back into the PICU. At first I was a little taken aback by Chicago's reaction. I expected an ambulance to 6 West, not a helicopter to the PICU. After all, the bleed had only just started and, although it was bright red blood which is worse than the tarry black stuff, it was only a small amount compared to what we had seen before. Later that night, much later, it hit me. She's having a bleed while on her new medicine, propranolol. This medicine was started in an effort to lower the pressure in her portal system, which would, hopefully anyway, mean that she would not have any more bleeds. But the problem with propranolol, in addition to the fact that it hasn't really been shown to work this way in kids, is that it lowers the heart rate. When you're in the middle of an active bleed, you want your heart rate to go up in order to keep pumping enough blood to your vital organs. If there's less blood overall in your system (because of the bleeding), you need your heart to pump faster to make better use of the lowered volume. Since propranolol suppresses that natural reaction, a bleed could be more dangerous.*
After 24 hours in the PICU, they were ready to move her upstairs to 6W, reassured that this bleed did not appear to be worsening. And then 24 hours after that, housekeepers had to be called to 6W to clean up the mess of Residents' jaws all over the floor, once Dr. Whitington announced that he was sending her home. Quite the surprise.
So now we have a new plan. Evidently the propranolol is not stopping her from bleeding, and perhaps makes it more dangerous when she does have a bleed, so she's off that now. Her liver enzymes (which sometimes indicate liver damage) are still elevated. I had hoped the elevation was a temporary effect of her recent vaccinations
, but the accepted theory now is that the propranolol may have caused reduced blood flow to her liver, resulting in damage. The reason that this is important is that the transplant surgeon has finally pinned down a date that he thinks would be the soonest he would consider retransplant for her: next November. So we need to be very careful that we don't do anything that might risk liver failure before that date.
Just so we know what we might be looking at, Dr. Whitington explained to Jörg that Annika is likely to have something like 20 bleeds between now and the date the surgeons have set. In recognition of that fact, we have now agreed that we will no longer head straight to the ER at the first sign of a bleed. Some of those 20 bleeds might be minor ones, like this one turned out to be, so we'll wait until it's clear that the bleed is, in fact, a major one before we bring her in. I heard this bit of news with a weird mix of disbelief and relief. Relief that we don't have to run right to the ER before we even know if it's going to be bad; relief that we've been given hope that not every bleed is going to need intervention. But there's some incredulousness, too. I mean, of the 8 or so bleeds that Annika's had since September, this has been the first to end so quickly and not
to require multiple transfusions. That's not the greatest track record.
Still, her doctors are concerned about her quality of life - and certainly staying out of the hospital, if possible, is going to go a long way toward improving that. As long as the message is not something like, "Enjoy her life while you can because we're not too sure where this is going, but none of us are holding our breath." Neither of us is really sure what the doctors in Chicago think her prognosis is. It's a question that I'm not even sure they can answer with any certainty. Remember when I asked the surgeon about her needing another transplant? Back when she first started bleeding again after
the shunt surgery? He told me that retransplant was on the horizon, but "only a teeny, tiny little speck on the horizon." I guess that means we're living life through a telephoto lens, given how that speck has zoomed in to full view in just a few short weeks. No wonder I'm having trouble getting the big picture.
All of my information is coming secondhand, but I take it that the transplant meeting last Thursday found the doctors somewhat conflicted on the topic of Annika, with the medical doctors pushing for the necessity of a retransplant, and the surgical doctors saying that, nevertheless, another transplant would not be a good idea just yet. I guess "conflicted" is just not the word I want to come to mind when describing discussions concerning my daughter's future.
At least the insurance disaster has been resolved for the time being, so that we don't have to worry about coverage for this latest stay. At least, I hope not.
We are just ... tired. Tired of fighting, tired of bad news, tired of wondering what the doctors are really saying about Annika's chances during those Big Meetings. I guess I just wish she didn't look so sick.
* After writing this, Jörg and I had our own Big Meeting to discuss the questions we have for the docs when we return to Chicago for liver clinic this week. He tells me that no one seemed concerned about propranolol's effect on the bleeds, just its effect on her liver. OK. But why did no one mention this possibility before she started propranolol? We sure do hate the feeling, the constant feeling, like the game plan is being made up as we go along.