40%

So sometimes on this journey, because we are neck deep in the medical world, it is hard for us to gauge how serious an issue is. Things that may be severe for a typical child may just be par for the course for a child like Evie. We deal with trach infections like you'd deal …

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Concerns

Back up in the room and Evie is getting a bit cheerier, watching Merida. We'll redo the Meckels scan (like we did in Cincinnati in November) sometime. We'll resume her Vest treatments to make sure the shaking doesn't restart the bleeding (or maybe TO get it to start up again). The concern for us at …

Normal

Scopes all looked normal, so the problem area is most definitely in the middle where we can't reach with scopes.  She's getting a PICC line right now so we can monitor for a few days and brainstorm of how to visualize that large area that we can't see easily.

Scopes

Well unfortunately the scan yesterday came back normal so we still don't know know where the bleed is happening. We've potentially missed the window again to find the damaged area of her bowel that keeps causing so many problems. Her hemoglobin only dipped a little this morning from last night, so the bleed has probably …

Red Blood Cell Scan

I just left Evie in Interventional Radiology where they have tagged some red blood cells from the donor blood and put them through her IV. They will watch where they go to see if they can locate the bleed in her intestines. Please pray we find it so that we can fix it! It'll take …

Blood Transfusion

Evie's hemoglobin dropped even further overnight (down to 6.9!) so she's finally getting that transfusion. She slept well and woke up happy and active. Crazy how tough this chick is. Scary, too. The GI doctor thinks this is a fairly slow bleed so that gives us a bit more time to plan our attack instead …

ER

Here in the ER. Evie's hemoglobin continues to drop so once they get her up to the PICU I expect we'll do a blood transfusion.

GI Bleed

Prayers appreciated. Evie's had black tar colored stools for a little over a week and they tested positive for blood. We did some bloodwork today and her hemoglobin has dropped significantly. Somewhere in her intestines she is bleeding and we need to figure out where. The GI doctors on call in Des Moines have asked …

New Bonus Issue

Well it’s been a while. I wish I could say that that was just because things have been going great and we’ve been busy having fun, but no such luck. So we got home from Evie’s 3.5 week hospital stay in November and she had a couple weeks where she did really well, but then …