Our Meeting Today

We had our meeting today with a doctor, social worker, chaplain, and care management person. It was very nice to be able to sit down and talk about what's happened and what is probably going to happen. Here is the MAIN thing they said.....His prognosis is GOOD!!!! That was the question on all of our minds that not one person wanted to ask, for fear of hearing the response. When they told us he was in 'grave condition' two weeks ago, I went and looked up exactly what the word means in medical terms. It's pretty much worse than critical. When you hear that, you really don't want to ask the doctors what his prognosis is. The doctor today said they are 'very happy' with how he is now. :)

Here are some highlights:

• They have not found an aneurysm and will be doing an angiogram a little later to make sure there is not one hiding behind the blood around his brain.
• They are purposely keeping his BP raised to help decrease vasospasms.
• They said getting pneumonia and a temperature are common.
• When he gets his new flap, it will be made out of porcelain. They can mold it better to his head that way.
• Someone had asked about the radiation he is going through with all his CT scans right now. They said that the amount of radiation you get from flying cross country is about equivalent to a chest x-ray. At this point, the CT scans and x-rays are far too important than worrying about the radiation.
• When asked if he will bleed again, they said usually they stop and don't start again. Since he has PKD, then there is that risk but they will be monitoring him very closely from now on. As far as how often he has CTs in the future, it's hard to say, but they will probably be pretty frequent.
• He will get a really cool helmet to wear. (no teasing!!) I think we're going to have the body shop personalize it for him. :)
• He had a 7 Hour breathing test today!! Wow! The only reason they stopped was because he was going down for a CT.
• The CT from today looked really good.
• Another thing they mentioned is that he probably won't remember this right now. In fact, the staff in the room said most patients don't remember the staff that worked with at this point. Kind of weird but I guess it's a good thing.

What now?

• Two things have to happen in order for him to leave the Neuro ICU and go to the 'Floor'. He has to be off the ventilator and his vasospasms have to stop. They said the typical time patients like this are in the ICU is about 4 weeks.
• Once they go to the 'floor', they are more 'normal' patients. They don't have their own personal nurse anymore and then they start getting more stable and start rehab.
• After the 'floor', they go into rehab. We are really hoping rehab gets to be in Wenatchee. It would be wonderful for him to see the kids when they are done with school and for Diane to sleep in her own bed. I bet they are both missing it....:)
• We asked about what part of his brain was affected. They said he may have trouble with a lot of things but speech shouldn't be affected since that's the left side of the brain. The big thing they see is something they called 'Neglect'. This is where he thinks he's moving the left side of his body but it's not moving. As of now, we really can't say for sure what's been damaged, what can heal, etc. Those are more things we'll learn as the days go on.

Today was bittersweet. Going in to see him, he'll open his eyes and just stare. I mean it, just stare. He had them open for about 10 minutes when we first got there and he kind of looks around, but mostly he just stares at the ceiling. He is moving both feet and hands when asked to. They are slight movements but he is doing it. Honestly, it's hard for all of us to see him like this but know this too is temporary and we will all be there to help him get better each and every day. Even if it's just holding his hand and rubbing his feet. We love you!

~Betsy