Hospital Life Tips and Tricks

Since July, we’ve been in the hospital something like 4ish months total. Ugh. But I’ve figured out a few things to make life a bit easier when you’re living in the hospital. Hopefully this helps someone else during their longer stays. These aren’t really in any particular order.  Except the first one. That one is …

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Going Home

Evie's hemoglobin isn't really dropping, so we're being discharged. We had scheduled scopes in Cincinnati back with GI Bleed #2 for April and they forgot to cancel those appointments, so we're just going to keep those and head out there in a couple weeks. They're going to do some more invasive scopes to see if …

I got nothing

Evie had a few stools with black in them today. They tested positive for blood so we're driving her to the ER. Please pray we can figure out what's wrong.

The Means Cannot be the End

When Evie was first born and we initially thought she was a typical child, we had very specific goals for her: breathe through her mouth and nose, eat by mouth, hit milestones in a certain order and time frame, learn to talk, etc. When we had her diagnosis confirmed genetically, our goals shifted. Not smaller …

Discharged

Evie got discharged yesterday and is doing great! Now we just need to fatten her up again and tackle all of those issues that we've been putting on the back burner while we dealt with her GI issues. Thank you all so much for your prayers during this entire ordeal. Hopefully we can finally starting …

BFFs

I bought Evie a new friend to play with at the hospital. They're having a lot of fun. Maybe too much fun.          

Waiting and Waiting

I apologize for not updating. Sometimes...I just really don't want to talk about it all. Evie's bowels are still not waking up. It's fairly normal for them to take so long in kids with chronic issues, but we have the added complication of Evie's allergic reaction to TPN. We've narrowed it down to the lipids …

Chicken or the Egg?

Spoke to the surgeon again today and she doesn't think that the scar tissue was from her fundo surgery in her NICU days. It's kind of a chicken or the egg scenario, though. Was this a birth defect in that part of the bowel that led to the recurrent intussusceptions? Or was the first intussusception …

Recovery

Evie is doing okay this morning, but we had a rough night with pain at first. The doctors went ahead and increased her morphine dose and frequency and she did much better. We're just keeping the meds coming at this point so her pain doesn't get out of control. So they ended up taking out about …

FOUND IT!

We finally found the problem!!!!!!!!!!!!!!!!!! Evie had a part of her bowel kind of wrapped up in scar tissue (I'm waiting to hear more specifics from the surgeon).  They unraveled it, but decided in the end that it was best to just cut that part of her bowel out. The rest of her bowels looked …