I'm on my phone at the hospital so writing this blog should be interesting. Jude's coughing consistently, running a fever, and just not a happy camper. He is having problems regulating his o2 which seems to be the norm lately. Good news is he has wet diapers again!! Also since putting him on a continuous slow running feed the vomiting has subsided.
My favorite neurologist of Jude's just came in. He said he thinks we should keep Jude on the oral dose of Baclofen but remove the Clonidine patch. We are going to take things step at a time and see how Jude reacts. He explained there are really only four doctors in the area that deal with the baclofen pump and if we wanted another opinion he had a guy. However we may want to see them
In the office vs here. He wants Jude home ASAP because there are so many germs up here and Jude's immune system isn't stable. So if Jude keeps his food down and stays stable overnight they will send us home. However they did just have to mask Jude vs the cannula for oxygen.
The neurologist said what we already know, that Jude is not textbook. He asked if the other doctors have explained why his oxygen levels have given us issues since the surgery but I explained they had no explanation. I told him I fear Jude may never return to the condition he was prior to the pump placement. He then asked about taking the pump out and I explained they said they wanted to wait and he replied "of course get him stable".
So their plan of actionis is focusing on his illness right now. They believe it's viral but will have the test back soon. Once he gets passed this illness they will move in to treating the issues from the surgery. Either that or at least get us to someone who might have an idea what happened. The neurologist did agree that the pump pushing the Baclofen in just obviously didn't work for Jude. His case is so complicated and they have to take baby steps.
Looking back to raising Emily it still amazes me that we take such a sick child home. One that needs oxygen and so many other interventions but I'm thankful we can. I'm thankful we have the modern technology of having our own little hospital at our house.
So Jude's still a mystery. I'm still praying he hangs out with us a lot longer and that this pain decreases for him. I think we have to adapt to Jude's new condition and learn how to better manage it out of the hospital.