ANOTHER ROUGH DAY

Sometimes I have let myself think back on the times when we had uncontrolled seizures with Jacob in the past. As I was going down memory lane, I had a hard time understanding how we did it. The

seizure watch is a very exhausting, nerve-wracking place to be with Jacob. He is very hard to read when it comes to seizures. We can see how he is trying to get out of a cluster of seizures, and we might wait to give him the next medication in line, and when it doesn't work, we have fallen behind. We have lost minutes from stopping a seizure. Jacob is already on more seizure medications than most kiddos, the same goes for the doses he takes. They are most of the time higher than the recommended dose for his weight.

 

So, when we start to execute his seizure action plan on a daily basis, there are definitely other issues that we introduce. As we're fighting seizures, it is getting harder for Jacob to have bowel movements, and when Jacob gets constipated he seizes...And than there is that breathing. The more medications we give him, the more sedated he gets, and the breathing slows down or gets more labored. Watching and fighting seizures with Jacob is requiring a strong mental mind, and lots and lots of patience doing nothing but monitoring Jacob's sats. Joakim and I making medical decisions that for most parents would be impossible to make. At one point this afternoon, I was ready to throw in the towel. I was ready for us to pack up our bags and simply admit Jacob. I felt we couldn't do it from home any longer, and then Dr. C. called! She had just stepped out of the movie theatre. I needed her so much. I needed her to tell me what we needed to do next. She reminded me that if I bring him in, he will be loaded with drugs (and I know we will stay for days). We decided to try one more thing from home, and if that wouldn't help Jacob, we would take him in for continuous IV seizure medications in the PICU. Bags are packed, and ready to go, if Jacob needs to go in tonight, but so far we are at home tonight, and nurse Libby will be with him all night long.

Tonight, we are entering week 4 of uncontrolled seizures. If we're still home tomorrow morning, we are going in for an EEG tomorrow. I am not sure how helpful that will be for the management of Jacob's seizures, but hopefully it can give us some clues. The problem is that Jacob's EEG baseline is very abnormal, since Jacob has subclinical seizures at all times. We are then seeing Dr. C. on Tuesday morning. We definitely need to sit down together, but it is also an appointment that I somewhat fear. What can we do more at this time? What about if she doesn't have a good answer.

I am also a little bit extra sad about tonight, since Jacob had done a little bit better the last three days. We had "only" treated one seizure per day vs. multiple today. As Jacob was doing a little bit better, we took full advantage of it. On Thursday, he got his weekly massage and he also got to do this warm water therapy at Bal Swan, which he loves. He also got to visit with his kindergarten friends! It was a really good day for all of us.

Friday was Jacob's last day at the public school Coyote Ridge before respiratory season. Dr. E. doesn't feel Jacob is safe in a large classroom during the respiratory season, so we only go in the fall and spring. He had a great time with his friends, and his teachers and therapists! They have done a fabulous job for Jacob so far! I am ending this post with some great pictures from Friday's school day!

We will miss Coyote Ridge for the coming 5 months, and so will his new friends, teachers & therapists. They are asking me, if Jacob could skype with them for the winter months, since they can't imagine the school year without him! My boy has that impact on most people who get to know him. They can't get enough of him :- And that is also the reason why we find that inner strength to fight yet another seizure with Jacob, any time he needs us.

Much love,
Maria.