Sorry it has been a while since my last update. Our trip to Omaha was more stressful than I expected. We left Hastings Tuesday night and stayed at the Rainbow House. Her procedure went well, they decided not to put the jelly bean camera down her because the bleeding from the biopsies they took would ruin the images and make the test worthless. So they are going to have her swallow it at a later time. She recovered quiet quickly. She has been through this so many times, she is amazingly resilient. After she was released we went back to the Rainbow House. She seemed good at first, quietly working on a puzzle for about an hour, then she fell asleep. I didn't think nothing of it since she had such a big morning. When 3:30 came I was getting her ready for the appt. with the immunologist. She wouldn't even wake up and felt warm. I transferred her from the bed to the stroller to the van and visa versa to the Dr's office without her really waking up beyond a bat of the eyes and a moan or two. They took her temp and it was 103. Dr. Kettlehut checked her out and sent us back to Children's E.R. With a list of labs he wanted done while we were there. I quickly drove the 2 miles back to the hospital. When we got there Dr. Zapata, One of our G.I. Dr.s was waiting for us at the door. In that short time her temp spiked to 105. She lost her color and quickly got black circles under her eyes. I seemed to be handling all this with a calmness I never felt b4. Then the nurses started to get nervous and the look in their eyes was something I never want to see again. They x-rayed her several times, initially thinking the had perforated something in the procedure that morning. Finally at about 7:30 they brought me to their computer to show me the pneumonia in the top right lung. Once we got her fever down she quickly came back. They gave her a big dose of antibiotics, and then a script to go home with. We had planned on coming home that night, but they called the rainbow house for us, because they want to keep us there to make sure we did OK through the night. We did not get out of the E.R. till around 9. I was glad to take refuge in our 2nd home! I love the rainbow house, We have "Family" there. People don't stare funny at Hannah. She is just another kid there. It is the closest we have to feeling normal. But it is a short lived love. and I was quick to come home the following morning to the rest of my angels. She is doing better now, still have been dealing with fevers, but nothing like that day. The other day we walked to pick up her brother the 2 blocks to the school, She asked if she could run, cause "mama, I love to run". I let her a little, of course I ended up carrying her the rest of the way home, and a breathing treatment when we got there, but that brief moment of freedom was like medicine to her soul.
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