In the hospital (Day 2)

Hello again everyone.  I'm home from a long day at the hospital.  I was there from about 8:45 this morning (which is about when Jeff left to go home) until after 8 tonight and I left the room just once to speed walk out to the bathroom near the elevators.  (The bathroom in Leahs room is shared with the patient next door so I don't want to carry germs from the bathroom into her room so I'd rather run through the hall to go pee).

 

Grandma Judy is there with Leah now so Jeff and I can (hopefully) get some rest here at home before heading back to the hospital to start the week.  We knew nothing would really happen this weekend but tomorrow all the GI docs should come to talk to us about what their plans are for the little lady.   Weekends at hospitals are a joke ...... I had two separate 'doctors' come into the room today; one ENT doc and one derm doc, who looked like 16 year olds who stole some white lab coats and wandered their way into Leah's room.  I gave the ENT guy a break cause I know EB ain't in their textbook - but the derm doc asked me if anyone else in the family has EB.  And then when I explained how Leah is pretty much totally bandaged he had the nerve to ask if it would be too much trouble for me to unwrap something to show him ............ uh yeah - it is, considering you've never seen her before and don't know what you'd be looking at anyway and you sure as s*#t aren't going to be able to help me bandage her back up.  Well, I didn't say it like that but rest assured I didn't disturb her bandages just so the lookie lou weekend Junior doc could take a peak. 

Leah's NG tube is still in place and she hasn't managed to dislodge it ........ it's tied in place with a trach tie that's wrapped around her head .... I'll get a picture of it tomorrow ........ it looks a bit odd but it's doing the job of holding the tube in place without using tape on her face.  The nurse from last night thought it up and said that's what they use on burn victims. 

So she's had a whole 24 hours worth of continuous feeds, which are her 24 calorie per ounce formula, with some extra Pedialyte mixed in to cover our butts on the hydration front.

I didn't manage to get any smiles out of her, though I did everything short of standing on my head to try to get one out of her.  But that little twinkle in her eye is coming back .... along with her stubborn personality.  Hopefully tomorrow I'll get a smile, or at least her trademark smirk out of her.

Thanks everyone so much for the prayers and well wishes - we need them now more than ever.  I know they're helping to keep her calm and comfortable so we can get her prepared for her G tube surgery in the next couple of days.