Shelbie has had a rough 3 weeks or so but I think she is finally starting to feel better. A week before Christmas she started having a lot of diarrea and then a few days after Christmas she started vomiting but not all the time. At first I attributed some of this to her cutting more teeth and a change in her formula but she kept getting worse.
Every few days I called the doctors to let them know her condition and took her to her pediatrician a few times and they all just wanted to give her a little more time to fight whatever this was. This past week she was close to dehydration and she has lost almost 2 pounds but they wanted to avoid hospitalization because of a risk of coming into contact with nastier viruses that are out there. Thursday, I took her to Alton for bloodwork which revealed one of her med levels was more than twice what it should be. We stopped one med and lowered the dosage of the other to see if that would help her GI tract heal. The doctors wanted me to give it just a little more time to see if these changes helped and an appointment was scheduled for Thursday morning at Childrens.
Tuesday night I almost took her to the ER because she had quit peeing and wasn't drinking much but by Wednesday morning she had started having wet diapers again. I took her to Childrens to see her cardiologist Thursday morning and they drew more blood and ran several more tests. They have concluded that initially Shelbie had a GI virus of some sort but one of the anti-rejection meds kept her from getting over it. If she continues to have problems then we will see a GI doctor at Childrens but they all seem confident that the worse is over.
Even though everyone could tell she wasn't feeling very well, she was much better than she had been earlier in the week. The started her on another med and sent her home. She is eating more but only wants to drink water right now. She started playing a little last night and is playing as I type which she hasn't done much of the last week or so.
I also wanted to let everyone know that a week before Christmas, we were contacted by the donor family through Mid America Transplant Network. We received a letter from the family telling us about their 3.5 year old little girl, Jess Marie. She passed away from complications of a pro-longed seizure. Much like Shelbie, she had spent a lot of time in the hospital and seeing doctors. The family lives in North Dakota and Jess had a 5 year old brother.
The package also included Christmas presents for Shelbie which were a baby doll with her own medical bag that they thought was appropriate and Jess Marie's favorite book "Llama Llama Red Pajama". I'm in the process of writing a letter back to them which also has to be sent through the Mid America Transplant Network but its much harder to write than I ever imagined.
Once again, I hope everyone had a safe and happy holiday. I will update with new info soon.
