Not all days are equal being a hospital mom. Some days everything comes together, some days nothing comes together, like today.
The big bomb last night was that Jacob needs a brain MRI to determine if his brain has changed, and if that is causing him increased seizures. The big fear living with mitochondrial disease is that your child can get worse at any time, and the brain MRI could give us that proof. Black and white.
Jacob looked pretty good this morning. He was not as sleepy, and I was thinking that we were moving in the right direction. It was even talk about us leaving right after the MRI! Yeah home! That plan took a halt very quickly. The neurology team didn't get around to putting in his MRI order until close to 2 pm. By that time, the schedule was full for the day! One of the things you do a lot in a hospital is to wait. Wait for a doctor to come by, wait for a medication to be given, wait for a test result, wait for a seizure to stop. As much as I dread the results of this MRI, I want to have it done. I want to know.
As I was sitting in bed with Jacob, I could see that he was entering the "sleepiness stage" he has been in for the last 3 days again. I didn't need an MRI anymore. I knew that something had happened to his brain, and that this was "my new Jacob". A Jacob who would go through the day in and out of sleepiness. It made me really sad and angry. It made me angry at the neurology team for making this stay really difficult. Every little thing we have suggested to them and agreed with Dr. C. is a "wait and see". I hate that our dear dr. C is a threat to so many of the other neurologists. They should be forever thankful that she is so involved with our complicated kiddo. There is no need for a power struggle. Today, it was on a ridiculous level of changing out a seizure medication that is not working, and changing a medication dose slightly. Nothing major, things we do all the time...but since it wasn't coming from the team, it was suddenly not acted upon. Ugh!
Jacob worked himself out of his sleepiness. After bath time, he started to slide in to it again. That is when I was certain that the "sleepiness" had nothing to do with all the meds, but the fact that Jacob had started having a new type of seizure. I didn't even call neurology. I went straight to Dr. C. She agreed that it could very well be a seizure, and we decided to execute his seizure action plan to see if it would actually stop his "sleepiness". Gemma was visiting at the same time, and she agreed that we were dealing with seizures. And yes, after a dose of Keppra, the seizure stopped!
As I write this, it seems so simple, but it was hours of struggles within myself and convincing of doctors of what was truly going on with Jacob. My mama gut feeling telling me that we had to act. We couldn't continue to think that Jacob was sleepy from medications. That has never happened before. The turbo liver is always working in high gear.
Jacob is not back to baseline, but he has looked his best tonight since Sunday morning. He started to get his old color back, and even gave me a smile before bed time! We are for sure dealing with new clinical seizures that are not controlled at this time. We don't know what the MRI will tell us about Jacob's brain, but at least it is scheduled for 7 am tomorrow morning.
We have been here before where we feel that Neurology doesn't "get" Jacob, and that the only one who truly understands Jacob is Dr. C. Depending on who is the Attending Neurologist, this dance will either be perfect (they follow Dr. C's lead) or completely out of synch as this time. We agreed with Dr. C. tonight that the best is for us to leave tomorrow, and then work with her outpatient on how to get the seizures under control. She is even talking about having Jacob get an EEG, so we can understand this new type of seizures. If we go that route, it will be outpatient.
Today was frustrating. Too much fighting for things that should just have happened. And at the same time, I am thinking not everybody has a Dr. C. A doctor who is super smart, stands up for Jacob at any time, willing to go against her colleagues, and always always has Jacob's best interest in mind. Jacob is lucky that she sleeps in her Team Jacob t-shirt at night :-
We are still hoping and praying the MRI will not show any mitochondrial stroke or other new brain abnormalities. We are also hoping that we are able to manage this new type of seizure from home with Dr. C's help, so we're not ending right back here again...It is time for Jacob to go back to school before winter comes!
I will leave you with a photo of Jacob tonight being out of his "sleepiness"!
Wish us good luck tomorrow! We will for sure need it!