She has had Bad headaches and dizzy spells, hives, the occasional minor nose bleed, blood in her stools (like twice) and urine (again maybe twice) but about six weeks ago she started occasionally gagging and spitting out blood. The first couple times it was no more than if you would have bit your cheek and spit. But each episode there has been more and more blood. Tuesday night one of my older girls had her and called me in a panic. She had gagged and spit up blood again but this time it was all blood and about 1/3 - 1/2 cup. Enough to really scare both of them. She also had a headache and chest pain and was dizzy. I was still at work so I met her in town and the Dr on call said to go straight to the ER. She did it a couple more times on the way into Tulsa. Once in the ER they said she was anemic. They admitted her and said they want to get to the bottom of it before releasing her since it gets worse and worse each time.
They cast a wide net and have been testing and testing for everything from cancer to tick disease and lung infections ... Checking the possibility that it was just maybe a bad nose bleed that runs backwards and she ends up spitting it out. Chest x-ray in the ER was read by a radiologist who never sees pediatric stuff and ruled it "chronic deterioration of the lung consistent with a history of cystic fibrosis." 😳😳😳. She has never had CF before?!
So they have had pulmonologists and ENT's running tests ... Today the ENT did a something ...ectomy where he sticks a scope up through each nostril to assess for possible nose bleeds etc. he found nothing.
They are pretty sure she has silent reflux causing possible esophageal and or stomach ulcers that bleed when inflamed. That's what they THINK. We have ONE pediatric GI Specialist in Tulsa apparently and he is on vacation until next week.😳😠😠. Because of the possible worst case scenario they didn't want to release us and have something break loose and us be unable to stop the bleeding in time to help her. Combine this with the fact we don't have anyone servicing our area at home with ambulatory care (it's a political chest pounding match about Whose area it is.) That makes releasing her all the more tricky. Plus - when the GI puts her under the two others want to run in and do scope procedures as well just to have it. Seems like everyone wants to stick probes in my little girl.
They ran an allergy blood panel and see if any food allergies show up that could be dangerous and will make the decision about releasing us later. Meanwhile her chest still hurts so it's just frustrating.
So best case scenario for us should be a fairly easy fix - worst case scenario could just need a lot of attention.
They have decided we can be released later today with some gastric medicine that seems to be keeping things under control. From what we can guess the bleeding is from the esophagus and may or may not be magnified by an allergy of some sort. They drew a bunch of blood from her so they can run an allergy test equivalent to getting the hundreds of test patches done in an allergy clinic but that won't be back until Sunday.
The name of the condition is barely able to be pronounced - and until we are 100% sure that's what it is, I won't worry about trying to spell it.
********Good News! ********
We are getting released today and will be spending the weekend in Tulsa at a friend's condo they have for business clients that fly in for meetings or whatever. This way we all have peace of mind that if there's another episode we are 15 minutes from the ER - TOPS. I will run home - while she stays in Tulsa with Dad or sisters - and get clothes etc and we will just wait for the GI Specialist on Monday and Tuesday. When we came in they cast a really wide net and while all of the possibilities were overwhelming, it was comforting knowing there wouldn't be anything come flying in sideways we hadn't considered.
Carly crawled up in her bed and painted her toe nails. 
Paige stuffed herself under the playground equipment in a Walking game of hide and seekThe activity room had ceramics to paint. 
We had a lot of friends bring coloring books and puzzles, - we have read one Junie B Jones book and part of a Little House on the Prairie book so far. Sisters kept things hopping and Netflix provided a whole tv series based on How To Train Your Dragon that she loved.
Beary (pronounced Barry) was a big hit with all of the doctors... One who gave him a complete examination "thinking it was Piper".
We still aren't done with this journey but at least tonight she will be laying on a blanket in downtown Tulsa watching a Drillers game and fireworks (as long as she can take it) instead of seeing these same 4 walls. As we already knew, St. Francis Children's Hospital is the Best! Sometime later I am going to review each of the doctors just for info if anyone ever lands here.
For now I have to finish a project from work that I CAN do remotely. Thank you Anna Cunningham for helping me with the questions IN the office, and a big thank you to SFR for not even questioning where I need to be right now. But without a shadow of a doubt the MVP of this week has been Jessica. My little Ruthie. Who was alone with her little sister miles out in the country and had to deal with large amounts of blood coming out of her little sister's mouth!! She did everything perfectly, and like every great caregiver, didn't break down until she knew she was safe!! Then the tears flowed. You did perfect and will be a great mom someday Ruthie! Also, Shana and Carly dropped everything and came to the hospital for a family evening and producing lots of giggles from a scared little sister!! 
We will update again if there are any changes. Thank you for all of the concern and prayers. I have no doubt God is exactly the same place He was before all of this started. Firmly in control of everything.
Blessings for today y'all ...we need them every day!
Heather
