Sunday, September 20, 2009

Downside

This is not a fun post to write. Today has not been a fun day. All those prayers for seizures? Well, please send some up for seizures to stop. She was started on IV Dilantin this morning but it doesn't seem to be working very well. This afternoon she has had long clusters (we're talking 40-50 minutes) of spasms that are not severe but upset her a lot. They've tried giving her Ativan, Versed, she's had her morphine and tylenol, but none of it is helping her to be comfortable or to sleep more than a few minutes at a time. We saw someone from neurosurgery and they said this is not uncommon but man, it is very upsetting for all of us. The worst is that she will not stop thrashing around in her bed. She keeps getting tangled up in all of the wires attached to her, and the worst was when she got a good tug on the wires coming out of the back of her head. That has always been Michael's greatest fear, that she would somehow damage her brain by doing that, and while no one seems to think it's possible that she hurt anything that seed has now been planted in my head.

Tuesday seems eons away. I'm hoping that tomorrow when everyone is back in the hospital we can get some reassurance that everything is okay for now. Weekends in the hospital are just awful when you want to get answers, no one is here.

I am not a crier in the hospital but my voice sure has been wavery today. I appreciate phone calls most of the time but I'm just not in the mood to talk right now. This stuff is just hard and there's nothing else to do but get through it. We just have to get through the hours until surgery.

6 comments:

Helen said...

Lisa - Prayers have been sent for seizures to stop. I know I am a far cry from a doc but I do not think that Julia could possibly hurt her brain by tugging at the tubing etc. If that were the case, they would not allow her to be in the state or the room she is in. I am pretty sure the brain is protected. Maybe you could page one of the docs you are comfortable with or e-mail Dr Chugani - didn't he return your weekend e-mail once. Let out a cry here and there. It is good to release some of those feelings. Mothers do not always have to be stoic. We will be praying all evening for Julia and I will update her prayer team. We love all of you.

Laura said...

Love you so much.

Michelle said...

Hang in there, honey. You can do this! We are all praying for strength for you, Michael and Julia. Love you so much!!

Allison said...

This is so hard to read, I can't imagine how this feels for you and Michael. You are both holding so strong. Sometimes, a good cry is all it takes to get you through another day. I love you guys. I am sending nothing but good vibes your way.

blogzilly said...

Just know that very minute of seizures endured during these moments is information gained that will help her long term.

The short term sucks. A lot. But the long term is that they are gonna have great info to work with.

Tara said...

I want to piggy back some of the other comments about how much this will help Julia and others in this same situation. Time is not a friend in the hospital. She is such a trooper and so are you and your husband. We think of you often here in Cincinnati. As always, our prayers are with you and Julia.