COMING HOME

We're home. We have been home for a little bit over 24 hours. It is wonderful to be home again - sleeping in our own beds without beeping monitors and being woken up by doctors in the wee hours, eating our own food, and having our own privacy of our home.

But coming home from the hospital with Jacob is always a lot of work. We always take Jacob home as soon as he is stable, not as soon as he is healthy and back to baseline. If that would be the case, I am not even sure how many days of the year we would spend in the hospital.

Dr. C. had decided that we would not sedate Jacob for the MRI. She was not willing to take that risk. Jacob was still sleeping when we took him down to radiology. I was also half asleep as we were walking down there. I had even forgotten to make myself a cup of coffee, which means that I was very sleepy...I was hoping that Jacob would sleep through the MRI. Unfortunately, he woke up the minute we moved him over to the MRI stretcher. It is such a daunting machine. The kid friendly stickers on the MRI machinery couldn't change that. I was worried how Jacob would take the loud noise from the MRI. When the noise stopped, I talked to him, and was hoping that it would make him less scared. 20 minutes after the MRI was completed, I had a text message from Dr. C. telling me that she could not see a mitochondrial stroke. In that minute, my tears were starting to flow. I felt hope that maybe I would get back my happy, smiley boy again. Maybe this "sleepy" stage would fade, and not be his new mental status. I knew Dr. C had the day off, but she had decided to come up and work on a plan to get Jacob home that day. Talk about commitment!

I quickly jumped in the shower, went downstairs to get a real coffee, and was greeted by Dr. C. By the time she arrived, Jacob had his first seizure of the day. We gave Jacob Keppra, and it stopped the seizure. Dr. C. updated his seizure action plan with even more steps we can do at home before calling 911. We have done this before when we know that the chance of Jacob going into status is very high. We have had times where we call 911 daily, sometimes even more than once a day. That is not a good situation for anyone. In addition, she gave us a long list of medications that we could go up on, if the seizures would continue. Since she is never more than a phone call or text message away, she is very comfortable to give us a plan like that. We can always re-strategize if necessary. After we had all plans signed and ready to go, and new prescriptions called in to the pharmacy, we got ready to leave!

When we walked out of the hospital, I could see that Jacob was starting to go into a seizure. I knew that the best for Jacob was to stay the course, go home, and give him his seizure medication that was due.

Yesterday was rough. We were home, but our boy was still very sleepy. It was almost as he was in a sedated stage. We know that he can be this way when we go up on medications, but you always worry that something has changed in Jacob's brain, and that we're dealing with a permanent change in his mental status. I got up on the spin bike to release some of my stress and sadness, and it was the hardest ride I have done in a long time. It is amazing how your body's mental and physical strength go together.

We started to go up on one of his best seizure medications last night. It seems to be working so far. Today, Jacob has not seized. It is the first day in a week's time. He was a bit sleepy right after medications, and his body got easily tired. Jacob is not doing great yet, but he is doing better than I thought he would today.

We're hoping that Jacob will adjust to his medication changes, stay seizure free, and start enjoying his days again. By the end of today, he was doing Halloween crafts with sis again!

We're going to stay close to home this weekend in case Jacob's seizures flare up again, and just take it easy. We're sincerely thankful that he didn't have a mitochondrial stroke this past week, and we're hoping that we can avoid calling 911 for awhile.

I want to sincerely thank everyone who is supporting us on this journey. You are all amazing, and in the middle of despair, it is that hug, smile, phone call, text message, uplifting words of encouragement, coffee, chocolate, pumpkin bread that makes a difference. We are sincerely thankful to you all, and that you never ever give up on us. One morning, I had 3 (!) coffees delivered to my room by 9:30 am! Talk about service, friends! You are keeping us going.

Much love and big thanks,
Maria.