Monday, December 27, 2010


I am glad I got to go home and sleep last night. It turned into a long day yesterday. We woke up by a phone call from Joakim's employer. One of their clients went live yesterday, and had found a bug first thing! Joakim started working right away.
I was getting Jacob's pulmonary routine going at the same time as I was preparing all his meds. I was just about to get something to eat when Jacob vomited! That is never a good sign when you have just given him 7 seizure medications. Due to them being so many, we can't simply just regive them either, since we could simply give him too much.
So...I made a quick decision to start implementing the seizure action plan. I had to execute the whole plan for 1 seizure, which takes about an hour. In between giving medications I had to check his saturation, heart rate, and make sure his air way was fine. I always feel like I have run a marathon when one of Jacob's long seizures finally comes to an end. I once said to Joakim that I love being Jacob's mom, but you do need to have your mental strength!
As Joakim called the ambulance, I ran up to get out of my PJ, and put on some clothes. No teeth brushing or combing my hair, simply put on some clothes and go! The seizure finally stopped in the ambulance after some more valium.
We then was hanging out in the ER most of the day. Since Jacob had such a high fever, they were running tons of tests. They were concerned that Jacob had pneumonia, but the chest x-ray came back normal! That was a relief. We don't have the results back from the blood culture, but my suspicion is that Jacob has some sort of virus that is hitting him pretty hard due to him being a mito kid. He has more secretions, higher heart rate, and had another vomiting episode today (not at the same time as his medications this time)! We have seen no seizures since yesterday morning, so that is always a big sigh of relief as well.
So, we're hanging out at TCH again. Sarah is up in the mountains for the day with Gail and Rich. She is going tubing, and will then hang out in the pool and hot tubs with her friend Jordan. She will have a good day!
Sarah is really struggling with this hospital stay. I think it's because of the holiday and her being out of school. I am SO thankful that she feels she can be completely open with me, but she was really sad and upset with Jacob being back in the hospital, and all the attention he gets. We cried and talked about Jacob and that he is not always going to be with us. Sarah has sure matured in the last year when I think about the conversations we have today compared to a year ago.
She is also taking it personally that she can't visit Children's Hospital during respiratory season. It's like the hospital does it personally to her! It truly annoys her.
So, with some wine and good sleep last night, and a couple of coffees today, we're back in business again. We will probably be here another day or two depending on how Jacob does, but very much hoping to break this pattern of going back and forth to Children's, as well as spending New Year's at home.
Much love, Maria.

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