The Good, The Bad, and The Ugly

February 29, 2020

Another good night. Olly made it through the whole night without needing any oxygen support and was only up once (at least she only woke dad once) overnight. This is a very good sign for us and the type of support we may need at home.

A good night led to a great morning and early afternoon that saw her get out of her room for a while and get to be loaded up in the stroller and go for a walk all over the building, mostly the first floor of the entire building. It was great to see her happy. She truly likes being able to get pushed around in the stroller.

When we got back from the walk she was still happy and content so we stayed sitting in the stroller for a bit until she had her first seizure of the day. It was one of the “new” ones and lasted a bit longer than dad but nothing major and within her normal length.

Things started to go sideways a little after 2 this afternoon. Olly showed the most pain I have seen from her in months. Keep in mind Olly is nonverbal and doesn’t make sounds outside of laughter very often. She was whining, groaning and tensing her whole body in pain. She had one longer and many smaller sessions like this.

After talking with her Dr. it was decided to have yet another ultrasound done to check this out. The ultrasound showed that Olly had another intussusception (see picture for explanation) at the end of her J-Tube. So her G/J-Tube was removed again and is back to a G-Tube. We will be discussing with her team of Drs. tomorrow or Monday about what the next steps are going to be. The hard part is she needs something that will support her feedings and normally that would be J-Tube. We seem to have the pain managed for now with a couple of low doses of morphine.

After one last seizure (the big one, followed by the “new” one) she is finally winding down for the night and looks to be slipping off to sleep, fingers crossed.