Kara ended up sleeping away the entire first shift at the hospital on Saturday. They let her be, since she'd had such a rough night and had been up the entire time, very considerate of letting us all rest that first day. Brian and I rested off and on while Kara slept soundly in that large hospital bed until 3:00! By the way, getting the bed was THE BEST decisions we made. They asked in the ER if she slept in a bed or crib. I said a crib but can we please have a bed here because the last time she was in we took turns with her in the chair, she never touched the crib other than for a few hours each night. This way she had her own little spot - tucked in with her blankies watching tv, playing toys on the bed, coloring, much better and much more comfortable for snuggling Mommy and Daddy time.
Friday afternoon, after Kara woke up we got her to drink a bottle and had some company come and visit to break up her day a little. It was so nice to see familiar faces and good for us to have some support at the hospital as well, since we were 2 1/2 hours away from home! She was feeling much better and she didn't end up having anymore diarrhea that day but had a tummy that was FULL of gas which caused her pain off and on throughout the evening. By that night, the Resident came in again and said she was pretty sure we'd be able to head home in the morning. Kara started eating little bits here and there and was drinking pretty well. We went for a few walks to try and get that gas out of her tummy and did some more playing to try and wear her out after sleeping all day.
By 11 last night we finally got her to settle down...right before shift change. I think we were asleep for about 20 minutes before they came in to check on her, this time insisting they had to. We'd been anticipating IV problems the entire time (And thank GOD it held up for us!) so they had to closely check that out, which required light, and they apparently needed vitals, including a blood pressure which I tried to fight. Kara fought the battle much better and after two attempts of her screaming at the nursing assistant, she called it quits, left it on her arm, and was planning on coming back and hitting the button later. That being on her arm aggravated her as she was trying to fall asleep so eventually, the Mamma Bear took it off her arm and threw it on the floor. (Crabby? Maybe a little. Do you blame me? We wanted sleep!) We didn't get bothered anymore through the night, that I remember anyway!)
This morning I woke up at 7:00 and figured I'd get myself awake a little bit. Got up, brushed my teeth, washed my face and climbed back in bed when the Resident came back in. She said we were ok to go, she just had to page GI to get his opinion and he'd come check her out. I figured that would take a while so that was my opportunity to hop in the shower. Well, go figure, I had just got in and shampooed my hair when Brian opened the door..."They're here" "Who?" "The team, all of them." "YOU ARE KIDDING ME." I quick rinsed, got out and threw my pj's back on because they were the easiest. I came out of the bathroom...go figure that would happen to me...
I went through everything with the GI doctor. Basically, they only handled what they figure was a virus that she got. The lab work shows that it's viral and since she'd been vomit and diarrhea free she was ok to go home. I asked all kind of questions - when to follow up, what about how things have been going slowly downhill for the last month or so, we have NO baseline, what are we supposed to do? He explained that we needed Dr. S to follow up on that because she knows Kara's care so well, as opposed to him trying to guess. He told me (WARNING to other FPIES Mom's reading this! You are NOT going to like this one bit!) that FPIES kids grow out of this by the age of two and since she's a little over two we should be at the end of our road as far as that goes. GASP. I bit my tongue. No clue where he got that info but it is SOOOOOOOOO conflicting and must be from like 1979 or something...when these babies didn't survive. He asked if she's had an endoscopy and I explained yes, but it was when she was only on one or two foods and so we had a great baseline at the time so the scope was normal. I asked different questions about eosinophilic disorders, which he made it sound like she could have something like that going on but mostly just stressed that we need to work with Dr. S about this.
We checked out of the U of M at 10:00 this morning and were home shortly after noon. We stopped home to get clean clothes on and then went to Grandma's to get big sister. We ended up spending the day there, actually at Great Grandma's on the lake, watching the power boat races today and the girls played a little bit. This Momma got a nice, long, much needed nap and break. Just what I needed and perfect for Kara to be with her sister, outside and not being cooped up in the house or hospital.
Kara did start eating today...I've been extremely careful about what she's eaten, making sure that they are foods that we knew were 100% safe, basically foods that she had in her first few trials. Unfortunately, we are back to foods running right through her again. After having icky diaper #7, I called down to the U and they paged the GI on-call who is the same doctor we've been dealing with since Thursday night when our hometown ER called down. "Basically, she is getting over a bad strain of gastroenteritis. Even though she was better this could hang in there for as much as a week or more. It's perfectly normal." I explained that it's the same symptoms as before, before we even went to the ER the first time, what sort of brought us to the U to be addressed Friday night. Upon hearing it's normal, I let it go.
I'll be on the phone at 8:00 a.m trying to get a hold of Dr. S. After that, getting that immunology appointment made. Hopefully this is the last segment of our exciting weekend. I'm exhausted, physically, mentally, emotionally. Defeated, once again. But, we are home now and that's all that matters. I'm hoping Kara sleeps well in her own bed all night and that tomorrow we can get somewhere with everything that needs to be done that should have been done over the weekend.
Anyone do laundry? Clean house? Fold clothes? Organize clutter? Clean bedrooms? :)
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