Friday, November 27, 2009

Black Friday

No, I didn't go shopping either :) And yes this is me, Jill, updating my own blog. And No, we are not out of the hospital. Well, not technically. I am staying with the rest of my family (sans Matthew) in our room across from the hospital. They have internet access here that is different from the hospitals, but even slower. However, it does allow me access to my blog; so I thought I'd update it myself for a change.



Today was fairly uneventful. With all the H1N1 stuff, we had to get special permission for the kids to come up to Matthew's room. They did give us special permission, but they can only come for 1 hour a day. So we have been doing some fancy work to keep us together, but also be with Matthew as much as possible. I went up with him this morning and Steve and the kids joined us around 10:30 for a rousing game of the hospital's bingo (in which Matthew won one game and Megan won twice) and then we took off for lunch. After lunch, Steve went to spend the afternoon with Matthew and I took the older kiddos out and we walked to the Science Museum. We spent the whole afternoon there, which was pretty fun. We came home for supper and then I went and spent the last few hours of the evening with Matthew and put him to sleep. He is resting quietly, so I walked back to our apartment, and we will do it all over again tomorrow.



Matthew has been on and off oxygen all day. They are doing breathing treatments and percussion treatments to his chest (to loosen up "junk" in his lungs). Seizure wise we are only seeing what we call "simple partial" seizures. Simple means that he is still alert and oriented and partial meaning one-side of his body. This type of seizure is not as worriesome and so we are trying to get rid of with the ketogenic diet. So far Matthew is not spilling ketones in his urine, so they upped his ratio. The ketogenic diet can be figured at a number of different fat to protein ratios. Tuesday they started him on a 2:1 ratio and today they upped it to 2.5:1 ratio. They can go up to 4:1. And spilling ketones will take time. Time for his body to use up all the carbohydrate stores and start burning the fats for energy.



We had hoped that there would be a possibility that we would go home as a family on Sunday; but his respiratory issues may hold us back. That and the fact that he is not spilling ketones yet. We are READY to go home, and the fact that my family is here and may very well have to leave without us will be harder than I realized. If I had to guess, we should be ready to go home by mid week. Time will tell!

6 comments:

Tyler said...

I can tell that you are ready to go home. I know you want that more than anything. I will pray for a miracle that that can happen tomorrow but if not it will happen soon. I hope you guys had a good Thanksgiving considering the situation and glad you were all together.

Take care,

Diane, Tyler's mom

Keeslermom said...

Why go shopping when you have friends to go for you?

I'm sorry you won't be making the long drive back with Steve and the kiddos. Still praying!

Kristen said...

I enjoyed reading about your family time together.

Following hospital restrictions and rules is always tough. You can't always come and go as you wish. It will be nice when you can all be home together and be your own boss again.

You have our love and prayers!

Michelle said...

I'm so glad that your family came up to visit you for Thanksgiving. You can really feel cut off from normal life in the hospital, doubly so on holidays. A chance to refresh yourself with some time with the other kids must have been welcome.

I do hope you get to go home soon though!

therextras said...

Still praying for your family, and hoping you are reading this comment from your home. Barbara

Tara said...

Oh I hope you are able to go home soon! Lots of prayers from California!