Today’s clinic visit brought interesting news, there was talk for the first time about a release date. Release at this point means being allowed to return home and switching our long term care to Wake Forest University Hospital (Brenner). They suggested we could be released as early as two weeks from now, but I don’t think that it’s likely to happen that soon, mostly for our own reasons.
Michelle and I want to be sure, absolutely sure, that before we leave Duke’s care and the care of the doctors who now know Zoe best, that she has no dangers remaining, beyond the normal risk of infection. We want her graft to be firmly in place (it is), her counts to be at a stable level (not quite yet), and more than anything, her lines to come out.
Right now we’re having a very messy time with her feeding and medication. Zoe came off of the IV nutrition very recently, but we’re still struggling to get her intake up to where she is supposed to be. She has lost a little weight — which is probably a good thing — but we don’t want her to lose any more.
Generally at this age kids are supposed to be taking in around 30oz per day, however Zoe is closer to 15-20 most days, not including her meds. Her meds add another few oz, but the concern remains that she hasn’t found her groove yet with feeding.
In addition, her meds are a mess. We have a terrible time getting her to keep the oral meds down, but the only way to get her lines out is to go on all oral meds. A conundrum. We’ve asked to have her go back on Zofran for spit-ups in order to try and keep more of her fluids and oral meds down.
In general, her age is such that she has suddenly found her voice (fussing more than she used to), her strength (she yanks at everything, swats away syringes, etc), and her will to drool. Suddenly nothing can be easy, as if it ever was.
If I stand back, I begin to realize how far we’ve come. We’re talking about going home at some point in the next month or two, and that wouldn’t happen if she were in serious danger. Zoe’s growing up really fast now, someone opened the gates while we weren’t looking and she is off and running.
These are great things, but somehow, no matter how many steps forward we take, there still seems to be something to fret about.
I suppose at least the things we’re fretting about now are much more reasonable than life or death. I have a feeling that, once these few weeks of rough travel pass and Zoe has learned to eat her solids and her med situation is stable again, the rest will sort itself out.
It’s very hard to shift out of emergency gear though.
Evan, you do such a marvelous job of sharing the medical aspects of Zoe’s situaion in ways that we can understand. Your combination of medical and personal has just the right balance. M.
On the way to getting back to normal YEAH!! It’s been a long and tough trip but it’s almost over. Glad Zoe is doing well and loved the pictures. Love to all, John
What wonderful pictures of Zoe and Maya!! Two beautiful girls!!
It has to be scary thinking it is almost time to return home and very exciting at the same time.
Love to you all,
We here at The Storehouse have something we would like to send you. Could you please send us an address so we can ship something to you? The pictures on todays blog she looks ABSOLUTELY GORGEOUS!!!