My new normal

Thursday, April 2, 2009

I thought about titling this post "The ICU Diet" since so many of my posts lately have been fitness/nutrition related. Basically, the ICU diet is not having time to get hungry, and not having much appetite when you do eat. I'm eating, but it's not something I enjoy...which you know is unusual for me!

My new normal sucks. It's being in Fort Worth everyday in the ICU or the waiting room, spending the night in the room rationalizing every beep I hear (have I heard that one before? what does it mean? does a nurse need to come? IS a nurse coming?), having to be around lots of people when I just want to be alone. Mostly, it's a bunch of uncertainty. When will Tom wake up, what damage has already been done, and how long will it take for him to recover?

No one has answers like that right now. People say, "He'll be OK" or "He'll wake up" or whatever. And I know that is very likely and I think about it all the time and can't wait til I get to feel that overwhelming joy instead of this. I can't even describe what "this" is. But I don't get any comfort from hearing that he squeezed someone's hand or moved his head, etc. I am comforted that he is having reactions like that, it's good that he's moving, but the docs told me what's important is that he opens his eyes and answers a command. THAT'S what I want to see. I can't cling to uncertainties, and it doesn't give me hope to give a lot of meaning to something I can't be sure about.

What does give me comfort and hope is knowing that these injuries take a long time to heal. His brain went through a lot, and he's in there, but he doesn't know how to be awake yet. Even if he could wake up, the rest of his body/brain may not be ready to keep up with the stress waking up would bring. That things aren't getting worse is a certainty, something I can say with confidence, and that's comforting. He needs time.

Of course, I feel a little guilty that my hopes don't soar every time he does something...sometimes my heart will skip a beat, but it's followed quickly by a rationalization. For example, Tuesday, he opened an eye, and it was so amazing. But. He never closed it. He didn't do that on purpose. It was some kind of reflex. Tom has enough ups and downs, I can't handle the emotional ups and downs that come with thinking I'm seeing a "good sign" when there is no way I can know for sure until he is awake.

There is a very long road ahead of us. The doctor told me yesterday to start thinking about being here 1-2 months. Not necessarily in ICU...they are trying to get him out of there. But eventually he'll go to a regular room, then some kind of rehabilitation facility so whatever he ends up needing help with (if anything), he can rebuild skills.

Medically speaking, here are a few updates. They took the drain tube out of his brain, because it wasn't draining much anymore, which is a good thing. He has a little pneumonia. This is very common for patients like him. They want to shave the rest of his head tomorrow. He still has a low grade fever, around 100, but I will take anything but that 106 degree spike he had two nights ago. It was horrifying and exhausting. Today was more calm. But then, everything looks better when I'm rested. I slept last night, and I have two more nights off. His uncle is with him tonight, and my dad is coming tomorrow night.

Let me talk about some positive things for a minute. In fact, here is my funny ER story. At this point, he was in a stretcher, and they were preparing him for the first CT. He was struggling to speak - when he spoke, it was very strained and slow, usually only one word answers. They were asking me if he was allergic to any medications, and I said no, not that we were aware of. He said, "Oatmeal..." in his slow strained voice. LOL We had been talking about his oatmeal allergy just a few days before. OK Tom, we won't give you any oatmeal. :-)

I am really happy with where I am staying tonight. I didn't want the Texas Motor Speedway traffic to slow me down this weekend, so I was trying to find a hotel, and my friend/co-worker Rebekah looked into some rooms at a conference center on the campus of Southwestern Baptist Theological Seminary. It's safe and comfortable. The room is in a woman's dorm, and there is something comforting about being on a college campus, especially with the fate of my coursework this semester is uncertain. The area around the hospital is scary, and I was worried I would have to spend a lot more to stay in a safe(ish) place. This is an excellent price, and it's nice to not have to worry about where I am. I don't know of a safer place than a women's dorm at a seminary. It won't even let me watch Sex & the City. ;-)

If you made it this far, here is something I could use help with. If you have time to research any of the following, let me know what you find.

Complications related to epidural hematoma? He had an arterial clot and a veinus clot.

Specifics about epidural hematomas on his part of the brain? Looking at this picture: http://kids.niehs.nih.gov/images/brainpic.jpg The injury is in the area there around hearing, memory for speech and sight, etc.
What's up with his left arm and right leg moving a ton more than his right arm and left leg? The injury is on the left side.
Any grant-funded, research-type rehab programs for post-op head injuries?

Thanks everyone.

5 comments:

KW said...

I'm glad you got a chance to blog about some of this, and I want to reassure you that what you're feeling is very normal for the situation.

I sent you an email with some links about clinical trials and on two local rehabs.

Stay strong - you know I love you.

*hugs*

The O'Brien Family said...

Found this site with lots of links. Maybe contacting a local brain injury organization would be a good idea. They could probably offer support & info you are looking for. Here's the site: www.braininjurylawtexas.com/BrainInjuryLinks.htm

I love you!

Anonymous said...

I can't imagine what you're going through, but remember to keep your strength and health by eating and sleeping... as much as you don't want to. :-) Off my "mom" soapbox, now.

I will help with the research as much as I can this weekend. Remember, I'm here (along with a ton of other ppl I'm sure) if you need anything.

--Jenna

ColtonandJessica said...

Hey gorgeous! Thanks for the updates. I have been thinking about you all week.

Anonymous said...

Hey, Amber, thanks for creating this blog. All the OPer's are cheering you two on and anxious for any updates.

Glad you found a safe place to stay!

Visi/Kathy

 
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