Recooperating

As most of you know Willow was discharged from Omaha's children's hospital on Friday; however, it wasn't as smooth as I'd hoped. Her hemoglobin was pretty low that morning so a transfusion was ordered.  She ate a little but just had not gotten her appetite back. I had brought her wheelchair and car seat up to the room to measure whether or not she would fit with the brace. The width of her brace with waist support was 16": too big for both. We had been told that PT would help us find something that would work for us but PT said they had nothing that big and we'd have to just look around ourselves. All you moms who have ever spent time with a sick child in a hospital know how little time you are able to sleep. I really had felt pretty good but I think the enormity of the task ahead of me (getting this child in fragile condition in the car and tolerating a 12 hour car ride) must have been weighing on me. When the case manager came in at my request I got emotional (I hate that.) I had told PT if she could find something, fine. If not, we'd use the car's seat. This wasn't optimal for a fragile child but we were going to get home. I had hoped to discharge by 3pm but PT thought they found a seat (too small) and then ended up finding a New one made for children with body casts. First we had to try her in it (she wasn't happy with me) then we took it to car. The seat Sat up @ 8 inches which required buying 4 pillows to prop her legs up. We finally got her in the car at 5 drove the half mile to hotel.
  After getting meds I thought we were good and then she had a bowel movement which was loose. How to clean a child's bottom when she can't move legs and can only lift her bum a half inch? It was messy and neither of us were at our best but we got it changed.  I really could have used a good night sleep but I suddenly realized I would have to wake up every 2 hours to give her meds.
  We left Omaha at 8:15am and made it 3.5 hrs before we ditched the car seat. It caused her pain and restricted any movement in her upper body. Once we switched to a regular seat with pillows she actually slept. 12 hours later and we were home! It was actually done. Thanks be to God Almighty.