Clarification, Diane

I wanted to address a few questions that came up in comments from yesterday.

Scott's BP is an issue for him, so I want to clear up why it spiked. And although it was scary and not good, there was a reason which is good news.
Also his alertness is linked to his bed elevation not his BP. His brain is not handling gravitational pressure right now...to be expected. They are slowly working on getting him up sitting up. His bed was at 10% elevation since Wednesday, now it's at 20%. (He wasn't alert Sunday because he spent most of the night at 30% elevation. He was not ready for that!)

Scott's BP spiked like it did due to medication. They have a setting of 160-180 for the systolic the top number in BP. They are having to use Nimodipine to help the vasopspamims go down, the side effect blood pressure goes lower. His BP needs to be high to open the vassals in his brain so they use Levophed to raise his BP. The balancing act was not going so well yesterday as far a s BP is concerned. As the evening went on and the charge nurse helped, they did get it under control. He is now having waves, when he gets the Nimodipine his pressure is in the 150's but then after that has gotten in his body, it goes back to the 170's. His lower number is linked to the meds some but much less. It's mostly about what his body is physically doing and when he's really awake and "active for him" it's higher.
Hope this is helpful info. I sure am learning a ton from sitting in "the Room" day after day. Next to my Honey is the only place I want to be though! Thanks God and family and friends that it is possible for this to happen!
Diane

Day 18 Update

Remember when I said there would be a lot of ups and downs and that this whole experience would feel like a roller coaster of emotions? Well, that was true today.

This morning, Scott just wasn't wanting to wake up very much. He wasn't as responsive and had us all a little worried (ok...a lot worried!). He went down for another CT mid-morning and that came back ok. Nothing worse. They repositioned him and that helped a little.

Mom and I went in there after being in the cafeteria and saw his BP jump up to 205/100!! We pretty much peed our pants. I ran out to find a nurse and they quickly gave him some medication that lowered it to around 164/84 in about 3 minutes. They really want his systolic to be between 140-180. This is still high...but they want it high due to vasospasms. After they lowered his BP, he did wake up a lot more and was able to do all the things he was doing all day yesterday. It was good to see him like this again after not having him do that as much this morning. We were able to leave feeling a 'tiny' bit better.

We're all ready for this roller coaster to be over, especially Scott who looks at you as if he is really hating all this. Hopefully with the tube out, he'll be much happier given the circumstances. I am sure that he is so confused and scared when he wakes up. It breaks your heart to see him look at you with his eyes like that. We all just want to see a smile. :)

~Betsy

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