ROLLER COASTER RIDE

This hospital stay has sure been a roller coaster ride. I am honestly happy that I didn't post last night, since it would have been a "dark" post compared to today.
Sunday night, Jacob had a long seizure once again. The ICU team was on stand by to take him to the PICU, and this is where it so helps that we know so many people here. The ICU doctor knows Jacob and me, and when I told him that Jacob didn't need the ICU, he completely agreed. I was SO happy! I thanked him today in the cafeteria as we were both catching lunch.
Yesterday was not a good day for Jacob. He had tons of secretions, pretty lethargic and tired, and his heart rate was alarmingly high. I was told that the medical team, neurology and Dr. E. wanted to meet with us - all at the same time. It is never a good sign. That is typically what happens when people want to talk serious stuff with us about Jacob...
I was nervous. I definitely didn't feel ready to have a discussion about Jacob's life again. It just felt that everything was repeated from last year. Jacob's neurologist told me after the meeting that she has never seen me that upset. Dr. E. told me today that it was good, so I guess it wasn't too bad :-
There is a concern though that Jacob's seizures might be the cause of further progression of his disease or that he even had a mitochondrial stroke a few weeks ago. It could also mean that his seizures are simply acting up right now. No one knows for sure.
I told them that I understand, but that we're not ready to talk hospice yet. We want them to try to control his seizures, even if it means to try new medications. So, we got into plan mode once again.
Ironically, no one thought about checking Jacob's temperature until Dr. E. asked how Sarah is doing, since she was home with a virus. Jacob was laying in bed with a high fever! The conversation got a bit lighter as the virus could explain a lot of his symptoms including the seizures coming back.
I still went home with a heavy heart last night. Putting a sick girl to bed after yet another breathing treatment. Really worried about Jacob's seizures, and if he would end up in the PICU over night if he would start seizing again. I even talked to a few of our close friends to be on standby and take Sarah in case I would have to go in over night to be with Jacob again.
I woke up to the news that Jacob didn't seize over night, and the fever was gone! His cold also seemed much better! Tomorrow might even be going home day.
This was a hard stay. I really got to see the political and hierarchical structure within neurology, and how they don't want Jacob's doctor to be involved when he is in the hospital. It was not pretty...
I also don't know how many times I got asked about Jacob's DNR (do not resuscitate). I could really feel how nervous the doctors are around Jacob, and I realized how used we have become to take care of Jacob no matter what. I guess I got the fact confirmed that he is a really pretty (!), but medically fragiled kiddo. We just have gotten used to it.
We now hope that we get to take Jacob home tomorrow, and can enjoy some time without nasty seizures. We also hope that as we enter the month of December that we get to enjoy the holidays with Jacob at home.
Love, Maria.