This weather has taken its toll on just about everyone. It finally caught up to Casey last week. She started with an ear infection and has been having lots of respiratory issues. No fever, and the stuff she is clearing is out is thick and tons of it, but it’s not the color we would see with a pneumonia or infection. I think she has a nasty cold or flu (she did get her flu shot though- so hopefully it’s a cold) and an ear infection. She has needed a lot of oxygen over the past few days and tons of suctioning. Last night was a little better than she has done in a while so I was hopeful, but today she is back to being miserable.
The good news is that her GI bleed does seem to be a lot better with the preventative medication as opposed to taking it re actively. The bleeding being better has led to her seizures improving as well. That’s all very good news. I hope to talk with her GI doctor this afternoon to get the official results of all of the tests he ordered and come up with a long term game plan. We saw neuro last week. She said that Casey’s EEG did not show any obvious seizures, but that it does have a lot of noise (abnormal activity- all of her EEGs have had that- nothing new). She thinks that the increased seizures with the bleeding and when Casey is sick could be either Local Seizures (also called focal or partial) or it could be a pain response and not actually a seizure at all. Since Casey has little to no control over her body movements, she said that if Casey is not able to express pain in other ways we may be seeing them as what would appear to be a seizure. Since they seem to be better controlled now we will just keep an eye on things and go from there.
We plan on just laying low the rest of this week while we let Casey get over whatever bug this is, and then we follow up with ENT next week to see how the ear looks. I’ll try to post more next week when we have all of the labs and doctor updates. Until then we hope everyone is well and staying warm.