We're now home from our impromptu adventures at Boston Children's Hospital. Over the weekend Caleigh's intestines woke up properly and she was able to tolerate the 24 hour continuous feeds without major pain again.
Behavior wise, she was very angry and screamed all weekend, but I completely understand. Honestly, I wanted to scream a little too. Being on lock down in maybe 300 square feet of space, for over a week, while having the flu wouldn't be anyone's idea of a good time. We tried to make the best of it though.
I ended up getting to an urgent care for steroids and cough medicine. Eric is back to normal and Caleigh has an occasional cough. Overall, we're feeling better.
We have a serious need to sleep in our own beds, not be woken up every 2-4 hours and sleep in past 5:30am without the sun rising through the curtain-less windows.
Over the next week we will try to get Caleigh back to her regular 18 hour a day feeds and follow-up with the CAIR team regarding the biopsies, future elective surgery and any changes that they want to make. We have a couple of non urgent options that Eric and I will want to think over once we are back to our routine and settled.
I know in my heart that we were in the right place for Caleigh to get the flu if it was going to happen. For the incubation period, the idea is that she had the flu either getting on the plane or got it while we were traveling that day. If we had been at our home hospital things would have been complicated with her not eating for over a week. They would have pushed IV nutrition a lot sooner. Boston was willing to wait and see. They know short gut and it made us feel more comfortable overall. The ER, IV teams, floor nurses, doctors, surgeons and staff were wonderful and they all kept saying "what are the chances" with a big joking smile.
For me, I was so much calmer than I thought I would be. Six years is a long time to take care of someone without the support or interference of hospital red tape. It's crazy how long it has been. With PTSD, I've learned that returning to the same situation, building and familiar faces are all triggers for me. Anger, attitude and the general feeling of wanting lay down, curl up in a ball and sleep forever are all very real. Moving Caleigh's care to Boston has not only helped her grow stronger; the move has helped us as well.