Emerson is in the hospital tonight… admitted yesterday for “dumping” (excessive output from her ileostomy). I’m not sure what to hope for at the moment, but a short stay is at the top of my list! I was told if it’s found to be rejection they’ll administer a few rounds of steroids, put her back on feeds, & we’ll be on our way. If it’s a virus, though, the course may be a bit more unpredictable. Apparently there isn’t much going around now, but there is something that’s gotten to a few transplant recipients recently & it’s rather nasty – hanging on for a while and requiring extended inpatient support. Ugh! I can’t say I’d ever hope for rejection, but a lengthy admission for nutritional support doesn’t sound so good either right now.
They stopped feeds through Eme’s j-tube yesterday & treatment at the moment involves 2 IVs with continual fluids and meds. They’re also monitoring labs and adding/replacing electrolytes as needed. I’m told she can do this for 4-5 days then, if still dumping, we’ll have to consider TPN. Those familiar with Eme and her history know that could be bad… the administration of TPN requires a surgically placed central line which, almost always, leads to a slew of other problems for Emerson. I’m certain we’ll at least try feeds before resorting to that! For today, though, we’re letting her bowel rest.
Cultures to this point are all negative and the scope of her bowel “looked” okay. We wait, now, for more cultures and biopsy results. Of course, the absence of a positive stool culture doesn’t mean she doesn’t have a virus – there are lots of infections that medical science can’t (or can’t yet) identify. As a matter of fact, the absence of any other obvious cause for this usually results in the diagnosis of an SKV – “some kinda virus” ;). I suspect that’s what we’re dealing with, but we’ll see.
In all, I find myself anxious and angry tonight. There’s much going on at home right now & I don’t have time for this!! I was reminded today, though, of the long stretch we’ve had out – this is Emerson’s first unplanned admission in a full year. Then I was reminded of this journey we’ve been on – how sick she’s been and how grim prior admissions looked. Then I went to Facebook and read a heart wrenching post from a mother/friend who lost her little girl to this same ugly disease. Then I put it all into perspective and decided to, instead, feel thankful for Emerson’s current status on the floor (& not in the PICU), and thankful that I get to sit with her through another illness… Then I got anxious and angry again. And this is what I concluded: It’s Okay.
It’s okay to feel angry. This stinks! Has it been worse? Yes. Are there parents who have it worse and would give anything to trade places with me? Yes, absolutely. In the grand scheme of things, there will (almost) always be a “worse” scenario and there will (almost) always be a reason to be grateful for something. That doesn’t mean it’s not hard though. We’re going into the holidays, and we’re expecting house guests over Thanksgiving (arriving in 2 short weeks), and we just had our lower level re-carpeted, and we’re working with a contractor to get some things fixed around the house, and there’s a CSS basketball game in Colorado Springs next week, and an FVS hockey game (also in Colorado Springs) next weekend… and a hospital admission in Omaha is not on my calendar!!
As I sit in a recliner next to Emerson’s hospital bed tonight, thinking about all that’s going on, I’m reminded of an important lesson I’ve learned on this journey – We can’t plan life. The events on our calendars are just activities… activities can be planned; life cannot be planned. Life happens only in the moment that we are living it, and we can never know what the next moment will bring. That being said, this is messing with my activities & I was looking forward to them! So, maybe disappointment is a better sentiment for tonight. I’m not angry, I’m disappointed. Sigh…
Tomorrow is a new day.