Friday, May 20, 2011


I will be forever thankful to my sister (who is also coming in a week to visit!) who got me to start writing this blog. It is the best medicine after a long day and night in the hospital, and it feels like your head is too tired to think.

The night was a rough one! Jacob was so close to end up in the ICU once again, but we made it through on the 8th floor once again. We got a bed quicker than we thought. At 1 am, we were up on the floor. An admission is never a quick thing though. Jacob's story already told in the ER, needs to be repeated twice - one time to the doc, and one time to the intern. We then had to review Jacob's long medication list to get the orders in for the next morning, respiratory came in to set Jacob up on the bi-pap, vitals needed to be recorded, supplies needed to be ordered, and I am probably forgetting half of the list the nurse had on her cheat sheet.

The bi-pap mask was strapped WAY to tight, and I could see that Jacob got stressed immediately. Before I even had time to correct the mask, he was seizing. A big fat complex partial seizure. The intern didn't really get it, but the nurse was quick to act. I was allowed to treat Jacob with my home meds, so we wouldn't loose time.

BUT then we ran into a road block. Jacob's next step on his seizure action plan is a dose of 30 mg. of Diastat. Oh boy did that freak out the medical team?! It didn't matter that it was on the seizure action plan, and something we do at home, they were not comfortable to give it. Calls had to be made to neurology, and neurology took forever to accept my alternative plan to do Ativan IV. In those instances, I am really wondering what I am going to do with all this knowledge one day. Neurology also wanted to start an EEG. That is a no-no for Jacob. We just don't go there any longer, we simply treat Jacob's seizures clinically. So, the team had to call neurology back to let them know that mama didn't agree.

When the Ativan finally made it into Jacob's body, he got a break. We got that big, big sigh that means that Jacob is out of his seizure. It is a very unique feeling to stand next to your child seizing for close to an hour, and then hear that final sigh. I always have to give Jacob a big kiss for him once again getting out of seizure hell.

The long seizure in conjunction with his pneumonia had made his skin color blueish, his respiration was up to 50, his heart rate was through the roof - and yes he spiked a fever! We all looked at ourselves, and thought ICU would be the place to end this night. The minute the Ativan kicked in, we could see that Jacob was starting to relax and things turned around. We would stay in room 812, the corner suite on the floor.

I think when I finally could put my head on the pillow it was 4 am. A 22 hours day.

The nurse woke me up at 8:30 am, and asked if she should give Jacob's his morning meds...I smiled, but inside my grumpy me was thinking that what did she think the meds were there for???

The rest of the day flew by between one of my supermoms stopping by with her beautiful daughter who I had never met before. Another close friend bringing sushi for dinner. The attending epileptologist given a lecture to the med students on Jacob's seizures, which was really interesting to me as well. Him also suggesting us replacing 3 of Jacob's med with one drug that will be FDA approved in the fall. Very much liked that! Having a long chat with Dr. C., who has truly become a friend over the years, catching up on Jacob and life in general. Dr. E. being pretty relaxed despite Jacob having pneumonia 2 in a month. She just put it in a bigger perspective. "I am ok if we can only focus on his pneumonia rather than having to factor in cardiomyopathy" referring to Jacob's heart. Jacob's pulmonologist being all over the team making sure we're getting the right antibiotics and plan on board this time. All those people that so care about Jacob, but also about us all as a family. Dr. E loved, loved spending time with Sarah this afternoon. Dr. E has always had a very high opinion of our girl, and they have their own bond that they have developed over the years. Sarah told Dr. E. that her dad is taking her on a road trip this summer, so I don't think daddy is getting out of that one now :-

Jacob, our brave little guy, who once again so impressed me this past night despite everything being against him - seizures, fever, pneumonia, breathing, is sick. This is the sickest he has been this year. He simply slept today, which we all know is a rare thing for him. His body is so exhausted.

We're hoping to go home early next week on IV antibiotics, but this pneumonia will definitely take some time to get over.

If you have a moment, send Jacob a card to cheer him up. It gets delivered straight to his room, and his sis will proudly read each of them to him and hang it on his white hospital walls:

Much love from a tired mom,


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