3.25.12

Now seems as good a time as any to post about this past week. Now as I sit here holding my crying Aimee. There isn't much I can do to help her feel better, for one because I have no idea what is wrong. Some nights she just cries. It breaks my heart when the giant tears roll down her face. I just hold her, sing to her, and wait for the sadness to pass. 
We had an unusual bout of events this week at home. It started on Tuesday night when I was carefully moving Aimee out of her chair to sit with me on the couch while she finished her dinner. To my great horror, the tube caught somewhere along the way and the button in her stomach popped out. What an awful moment as I realized what had happened. There I see the little balloon, which should be safe inside of her, dangling at the end of the feeding tube with blenderized food just dripping out steadily. Oh boy did I feel sick. Thankfully Ed was home with me and he very calmly cleaned up the button as I cleaned spilled food and blood off of Aimee. We were able to replace it fairly quickly. 
After a nervous night of watching and listening for any problems, I woke Aimee up to find her abdomen covered with tiny raised dots. A rash on her stomach. The main concern I had was that it could be a side effect of one of her seizure medications. We were very specifically told that if we ever saw a rash on her stomach to immediately call neurology as it could be a dangerous syndrome developing. After talking with a nurse, we decided to take her in to the doctor for a check-in. It didn't seem to be spreading and after this appointment the doctors decided to have us just put her on Benadryl and watch her for 24 hours to be sure there was no negative changes. The rash seemed a bit better in the morning and now it is almost gone. Looking back on it, it seems that the rash had to be one of two things, a strangely timed eczema issue or rash caused by the shock of her button being pulled out.  
The most frustrating part of this whole process was how high energy Aimee has been through it. Of course this is a good thing that she is happy and hyper, but the frustration is that we did not use the BiPAP machine during the last several nights, because she was on Benadryl. So somehow no machine and medication is more affective than the machine whose purpose is to help her get good sleep. Big, big sigh!