Catheters Suck, By Scott

He is awake and we are reading some of the comments.
He wants everyone to know: Catheters Suck and Lydicane Rules! (the nurse told him if she had to put a catheter back in she would numb him with lydicane first).

A few things he has said about the blog:
"It's really cool Besty's doing a blog."
"Wow people read about me. That's weird."
"Gooch is coming to Seattle? I sure wish he could bring me a Jamba Juice."
"Jeff is following the blog? That surprises me. He's a car guy. Not a computer guy."
"Thanks everyone for caring and reading. Thanks for the prayers too"
Scott....back to sleep, it's late:)

I want to let you all know he is doing really well. We work really well together at doing what he needs to get stronger and better. His mind and body are telling him it's time to get up and moving but his brain says no. It's very frustrating to him but he handles it well. Although his brain is not handling the pressure of sitting up to far for very long, he is still very smart as always. His brain is defiantly there. He follows and remembers what his doctors and nurses say. He can even tell others later fairly well later. He tries to learn the names of all the people who come in his room. And remembers those who come in often. He really likes giving his nurses a hard time. He had the same nurse for the 1st 2 days we were here. She is really great with him. She has to run through the mental tests as his bed elevation changes. So it's a lot of "what's your name" "what's ur BDay" "what's ur full name?" After she asked few times "what's your full name?" He turns to her and says, "i didn't get your full name" big smile/chuckle.
It's so great to have him a wake again and talking. Just so you all know, he is very sweet and grateful to me for even the smallest of things I do for him.
Diane

Laughter is the Best Medicine!

Today was great. Want to know why? Because Scott had us all cracking up!!! It felt so good to truly laugh again....it had been too long. He was quite the comedian with us today and we absolutely, 100% loved it! His mind is completely all there and his memory is great. He is a little slower to respond but oh man, when he does, it's hilarious. He had a grin on his face today and I can't begin to tell you how much we all missed seeing it. Booger, we've missed hearing your voice and we had the best time seeing you today....thank you! Looking forward to great days ahead of us!

~Betsy

Day 23 Update

I have always looked forward to these posts. Even when the news was not good, I knew that by doing these, I have been helping in my own little way. Helping Scott's loved ones stay informed and helping journal this moment in Scott's life. Knowing he can go back and read how he was from day 1 is going to be so helpful in the recovery process. We've been told he will forget most of this experience, and may very well like to forget it, but with time, he may want to know. I find myself enjoying the past couple posts more and more though...because tonight I have another good one!

The Floor

Day one is now complete of Scott being moved to the floor. Diane has her own bed in his room now and stays with him all night. It's comforting knowing she's there and that he also doesn't need as much nurse attention. Now she gets to get up with him in the middle of the night and see to most of his needs. Even if it's just making sure he's not trying to get out of bed (like at 1:30 this morning!). I told her it must feel like having a newborn again and she kind of laughed.

There is not a lot to post on his medical condition. This is a good thing. They pretty much have him off all IV drugs now. If they need to give him something, they give it through his feeding tube or in his picc line. He still gets a shot every day to prevent blood clots and he's not a major fan of these because they burn afterwards. He also had a swallowing test today. Got to have ice chips and applesauce. Yummy. He is getting a little anxious for real food. I can not imagine what it would be like to not eat for over 3 weeks. And yes, he has lost some weight since the feeding tube is probably just the bare minimum.

They started physical therapy today and will continue to do that for quite some time. When he's awake, he's awake. Personally, I have yet to see him really awake. When I was down there yesterday, he woke up for about 5 minutes and on Tuesday, he talked to me a little but was still a little sore from having his ventilator taken out. Here's a great example of just how awake Booger can be:

Booger (to Diane): Where's my phone?

Diane: You want your phone? Why?

Booger: Want to text Farmer.

Diane: Ok. (He tries to text and Diane has to help him) What do you want to text?

Booger's text: Catheters Suck! (send)

Farmer's text: Who is this? (He's wondering who stole Scott's phone)

Diane texts an explanation. Farmer was thrilled!

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This is just one example (my personal favorite) of Scott having his personality back. He can get a little impatient and wants to know what's going on. He wants explanations of what's happening to him and I think it's great that he's so aware. Sometimes he forgets things and has to be told again. I am still shocked at his progress this week and think about how it was only 1 week ago that we had our meeting with some staff members to discuss his treatment plan. There are times when it feels like this is all flying by and then there are times when it can't go fast enough. Let's keep sending our love his way and hope for his days to just get better and better.

~Betsy

Big Day! (UPDATE)

So.....drum roll please...........

.............................................

As of when I left the hospital....Scott is moving to the 'Floor' today!!! Wow! No longer in ICU, which means, no longer in critical status! This is wonderful news. It's been 3 weeks since he arrived and we were told he would probably be in ICU for about 4 weeks. Well, Booger is strong and otherwise healthy and therefore, healing pretty fast. Just one week ago, we were still planning on a tracheostomy happening. Now, he's breathing on his own, being sarcastic with the nurses and is leaving the ICU. Amazing! Also, did I mention they told us no more chest x-rays because that looks so good?

They finally took his staples out today....I'm a little sad that he no longer has them because they really made him look tough. Just kidding, it's good they're out. Only we'll get to see them again after they put his prosthetic flap on. I haven't really talked much about his incision/scar. It starts right in front of his right ear, wraps around the top of his ear, back towards the back of his head about 4 inches, then up to the top and ends at the edge of his hairline on top of his head. I think if you stretched it out, it's probably about a foot long. Luckily, Scott has some of the thickest hair around, so it won't really be noticable except in front of his ear.

UPDATE (12:45) - He's now officially in room #537E!!!! That was fast! Yippeeeeeeee!!!!!!

~Betsy

Day 21 Morning Update

Not much to update everyone on this morning...except....he's just continuing to improve!!! He's slowly waking up more and more and when he does, he's totally with it. Scott recognizes everyone he knows and has his feisty moments as well. It even sounds like he may be heading to the 'floor' sooner than we thought!!! He's still having some vasospasms, but the doctors said that they can happen for a while and just slowly go away. They are still having some issues with having his bed elevated more than 20%, so he may get another blood patch today to see if that helps. When he does sit up more, he falls asleep, and we want him awake. :)

I'm heading down there this morning and will let you know more later this afternoon.

~Betsy

Day 21 Morning Update

Scott had another good night. His sleep schedule is off though...meaning he's a little like a newborn baby...sleepy during the day and more awake at night. Sorry Booger, I will never call you a baby again. :) Doctors are giving him something to help wake him up for during the day so he'll be more tired in the evening.

They are still working on his bed positioning and the amount of elevation he can handle. Once he can be elevated to 30%, he'll be moved to a cardiac chair. I think this is still a bed, but will allow him to sit up easier and hopefully get him moving around faster. I'll find out more once he gets it. Here's what I could find by doing a quick internet search...not sure if this is really it or not.

Let's see, what else? Oh ya, his bone flap may go back on sooner rather than later. Still finding more info out on this and don't want to get our hopes up, so I'll just post more on this when it is closer to happening. We were originally told that it could be 6-8 weeks before he gets it, maybe it will be much sooner? We can only hope!!!

He's got a CT scheduled for today and I will let you know how that goes later. Mom and the kids are on their way over for the day to bring Scott his new helmet. I'm sure the kids are soooo excited to see their dad! The last time they saw him was right after surgery...so this is very exciting.

~Betsy

Scott's New Lid

Seriously, is this the coolest helmet you've seen for a brain surgery patient?????!?!?!!!!?

HUGE thank you to Tim and the guys at Cascade Auto Center for hookin' him up!

Day 20 Mid-day Update

So, I went and saw Scott today and have to say, he looks really good. What a difference having the ventilator out makes. You can tell that he still is uncomfortable with all the other things they have going in and out of him. He was awake while I was in there and was talking to me a little. Still groggy and his voice was so quiet that it was hard for me to hear him. But...what a relieve to actually hear him again! He kept trying to pull his oxygen tube out of his nose and from behind his ears. I'd put it back for him and tell him to knock it off. Just kidding, I was nicer than that.

Another thing he was doing was rubbing his eyes and then his hand would go up towards his head and rub there! Talk about freak me out! I grabbed his arm and said, 'you can't touch up there'. Thankfully, his helmet will be arriving tomorrow. By the way, did we mention he'd be wearing a helmet for a while? Also, the body shop he works at is busy getting it painted really cool for him. I'll take a picture of it and post it on here when I get a chance.

When I asked the nurse how he was doing, she said really well. All his vitals are stable and she said he's improved a ton in just the past 24 hours. He's moving around a lot and trying to pull things out. This could become a problem for nurses and Diane to handle, but at least he's doing something. :) When he sleeps, he sleeps hard. Being awake tires him out but it's so nice to see him awake. I'm not sure when his next tests/scans are and will let you know when I find out.

~Betsy

Day 20 Morning

So, he's saying a lot more than 'hi' right now!!! Diane said he's actually saying quite a bit but then he gets really tired and sleeps hard afterwards. I'm going to head down there in a bit and will do a better post this evening. YAY!!!!

~Betsy

The Ventilator's Out!!!

BEST NEWS WE'VE GOTTEN! IT'S OFFICIAL....THE VENTILATOR'S OUT!!!!!!

Diane was in the room for it and this is how it went:

The respiratory guy/gal told Scott what was going to happen and told him to cough a couple times. He coughed and up it went. Then they told him that he probably wouldn't be able to talk right away but asked him to say, 'hi'. And guess what???????

He did! Diane said it was raspy but I don't care. He said it!

This is so great and lets all just cross our fingers that it gets to stay out! Forever!!

Also, Scott had an angiogram today. First one since right before surgery and that one was only on his right side. Diane hadn't talked to the surgeons yet, so I'll probably wait to post more on that later. But, they had said that if they found an anuerysm, they'd fix it right away, so no anuerysm (unconfirmed news by me here). :) Let's celebrate this milestone and pray for many more!

~Betsy

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

Sunday Prayers

I wish I would have thought of this last night. But with today being Sunday, can you pray specifically for Scott to come off the ventilator and stay off of it. The plan as of now is that they will take the breathing tube out Monday. But there is alway a chance that it will have to go back in. Dr. Lam made it sould like they watch him for a few days to see if this will happen.
I find it easiest when I know what to pray for :)
Thanks you for your Love, Support, Strength and Prayers! Diane