This is so true. It has been crazy around here. The weather has been awful. There have been rain and hail storms with cold weather followed by hot days followed by cold, just all over the place. Everyone I talk to has either been getting sick or their kids or coworkers are sick. Friday night the weather got to Casey. She started running a fever and we literally got about an hour of sleep. Between suctioning, medicating, and trying to calm her crying down it was a really long night. She is still not feeling well. She is not crying as much, and we have a better control of her fever, but she still needs medication to help with pain and fever as well as to help thin out her secretions.
On Thursday night I went to prime her pump (put in fresh food) and when I opened the pump it broke. The door that holds the bag in place broke so it would no longer close. If it can’t close it doesn’t work. I called in to get it replaced and we were too late to get it sent out that day so they sent it out Friday for Saturday delivery. While we waited we had to rubber band the door close and get it just right so it would stay in place. I was really happy around 11 Saturday morning when the new one showed up.
I am not sure if it was the pump not feeding normally or if it was the early signs of her getting sick. Something made Casey throw up both Thursday and Friday night.
Casey has been really bad about laying on her GTube lately. She lays on the side then smooshed it into her stomach. This leaves a gap instead of a nice seal. So if we don’t catch it and move her off of it we find a huge puddle of leaky food and yuck just waiting for us. The puddle forms fast too. I am talking a minute and you have a mess. We have been doing everything we can to keep her from doing this. It has been so hard and the moisture in the wound has led to granulation tissue. So not only is it a mess, but now it is also painful for Casey.
On Wednesday Casey’s new PT is coming to do his assessment. After that we have the ARD meeting at the school on the 13th then she is ready to go. The ARD will determine her care plan (therapies, frequency, etc). After the ARD we can set up her new schedule then on the 23rd the services transfer over.
That is about it for now. We hope everyone is well.