I know, I probably shouldn’t do the all-caps-plus-exclamation-point thing any longer, after five freaking trips back to the hospital, but I can’t help it. Every time she does come home, we all breathe a sigh of relief (even if it’s lately been tempered with doubt). It’s just so much better in so many ways to have her here, resuming however close we can get to a “normal” life, than it is to be doing the hospital shuffle, putting our lives on hold, and wondering when (or if) the next piece of bad news is going to arrive.
As you’ve already read in the last post from Beth, Meredith was fitted with a PICC line, from the port in her arm vein, all the way up to her heart. Yesterday, we had a visit from the home care nurse, who taught us how to properly prepare (sterilize, flush) Meredith’s PICC line, administer the actual IV steroids, and then re-flush the line with saline followed by Heparin (anti-coagulant), so that she can continue to take this medication intravenously, as she seems to need (since she can’t tolerate the oral steroids, for whatever reason).
Obviously, after five trips back to the hospital, we’ve learned (if nothing else) not to feel 100% certain about the results of any treatment. But this is the one thing we’ve never been allowed to try in the previous four returns to home-based care: IV steroids. I’m no steroid expert (in fact, what I don’t know about steroids would fill volumes), but all the medical professionals we talk to tell us that there’s no theoretical difference between the IV drug Solumedrol and the oral steroid Prednisone, in terms of real-world effects. I don’t doubt their combined knowledge or opinions, either. I’ll just say that, for whatever reason, that doesn’t seem to be the case with Meredith’s current condition: every time she goes into the hospital and begins a course of twice-a-day Solumedrol, she feels, looks and acts steadily better. And every time we bring her home with a prescription for a supposedly equivalent dose of orally-administered Prednisone, she begins to slowly but steadily decline/relapse. In every one of the four previous instances, Meredith has taken between 12 hours and six days after discharge from the hospital (and disconnection from the IV steroids) to revert to a condition in which new purpura appear on her legs (ruptured capillaries), and her stomach fills with enough blood (and inflammation) that she is unable to keep food or even water down, and throws up every half hour or so, with blood in it.
To me, that means that the oral steroids just aren’t working. I don’t really even care what the reason is; I just want my daughter to get better, and (perhaps even more importantly after all she’s been through) to feel better; to come home for good.
Like I said, I’ve learned not to hold my breath after five separate hospitalizations, but I think this time, we might have figured out the proper course of treatment. Keep Meri in your thoughts. And thank you – everyone – again, for all the good wishes in the form of email, visits, cards or just plain “vibes.” We feel ya, and it’s been more of a help than you might think. 🙂