THOSE PRECIOUS MOMENTS

It is Saturday evening at Children's Hospital. Jacob is about to fall asleep for the night. He had a tiny bit better of a day today. We "only" treated seizures in the morning. He is very sleepy most of the day, since he is adjusting to higher doses of seizure medications and he is also on Benadryl to avoid an allergic reaction to one of his IV antibiotics. Jacob has been a poor sleeper all his life, so it is such an odd feeling to see my boy sleep for several hours of the day. It is just not my boy! Since his brain is resting while he's sleeping, we do let him sleep as he likes right now.

Jacob continues to spike fevers. We're not really sure why. Yesterday the verdict was pneumonia, but a closer look at the chest x-ray has ruled that out. The most likely explanation is that Jacob has caught a virus. He could possibly have a reaction to his IVIG treatment as well.

As I took a much needed break from the hospital last night and this morning, I have started to think that we need to try a new seizure drug. It is as his body is "immune" to the drugs he is on right now. They are not doing the job any longer. Since Jacob has been on most commonly used drugs for children, we know that we will have to try a newer drug. The neurology team is consulting with one of my favorite epileptologists. He has helped us before in making the right seizure medication choices for Jacob, so I am glad he is involved once again.

It is good and bad to have been in this scary place before. We know what didn't work for Jacob last time, so we're not repeating those things. The bad thing is that we have limited options due to that. My deepest worry is what is Jacob's mental status going to be. How much can we decrease his clinical seizures? How can we limit his medications, so he is not drugged up all the time? Can we get our happy, smiley boy back again? Those thoughts keep me up at night.

Last night, Jacob perked up when sister was visiting. He was more alert than we have seen him for days. As I was watching my kids interact, I knew that these are the precious moments that make this hard fight all so worth it. It is why none of us is willing or can give up.

 

I wanted to end this post to sincerely thank you all for the enormous outpour of kindness and support. We cherish every visit, every phone call, every message, every meal and all other help and support we all are receiving. I know that it might feel at times that there is nothing you can do to make Jacob better, but to simply show your kindness is more than enough. Kindness goes straight to our hearts.

 

Sincere thanks,

 

Maria.