Day 29 Update

Can any of us really believe it was 4 weeks ago tonight that Scott arrived at Swedish? I know I sure can't. Scott gets to try 'chewable' solids tomorrow and he has been tolerating sitting up more to eat. About a week ago he couldn't be elevated to more than 20%, now he's been at about 40%. The doctors believe that once the flap goes back on, he'll do much better with elevation. Speaking of the flap, it was ordered at the beginning of last week and takes about 3 weeks to get in. I'm not sure what the time frame is after it gets here. Not sure if it will already fit or if they have to measure him still and then fit it. These are questions I'll try and find the answer to. We have been reassured that placing the flap is a realitively routine procedure and the doctors have tried to reassure Scott as well. He's been getting anxious about another surgery but the nurses and doctors have all told him this is minor compared to what he's been through. Hopefully he'll have the flap back on in the next week. The sooner the better.

~Betsy

Day 28 Update

Personally, today has got the be the best day for Scott. I say that personally because even though I didn't see him or talk to him, I know he got to experience one of my all time favorite things in this world. You're wondering, 'What could it be'? Well, from my experience, this favorite thing in the whole world always makes me happy and yes, sometimes, hum....
I know, I know. 'Enough already,' you say, 'Just tell us what this wonderful thing was'!

Mashed Potatoes and Gravy!

~Betsy

Day 27 Update

Scott passed his swallow test!!! YAY!! He can officially eat applesauce, pudding, custard, yogurt....yumm!!!! Bring on the Jamba Juice!

~Betsy

Day 26 Update

Did I really not do a post yesterday? Yup. When I said no news is good news, I meant it. Things are pretty much the same as they were on Saturday. He was a little more sleepy yesterday, but we think it's because he was so awake on Saturday and because of the whole catheter issue. In and out...in and out...in and out...in.....poor guy.

They did order his new flap last week and we think it should be here next week. As to when it will go on, we're not sure.

I will continue to post things as I know them and I'm sure once we have a date on when the flap will go on, I'll have much more to post. Unfortunately and obviously, he'll have to go under general ansthesia again, have his incision opened up and yes, a catheter again. I'm sorry Booger! Hang in there...you're doing great!!!

~Betsy

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!

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

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

Day 17 Evening Update

Great day!

They just finished his breathing trial a little bit ago and it lasted over 13 hours!!! Amazing!! We are all so ready for that vent to come out!

Also, today he showed so much more improvement from even yesterday. He was more awake, he tracked you with his eyes, was motioning more with his hands, and was also nodding his head 'yes' and shaking his head 'no'. Soooooo Coooool! They even had to re-adjust his restraints because he was reaching for things.

We are all just so relieved he is showing the improvement that he is in just 2 days. The staff at the hospital seem happier with how things are going and we all just feel like that turning point we were looking for has happened. Obviously, we have a long road to recovery but at least they aren't in there ALL the time. We take it as a good sign if they leave his room longer than 10 minutes now.

I may start posting once a day as he improves because like I have said before, no news is good news.

As always and forever, we are all so thankful for your continuous love and support with all this. To our families, friends, co-workers, church members and everyone in between....we THANK YOU!

~Betsy

Day 17 Morning Update

Resting...that's what he's doing. He had an uneventful night and we like that. Heading down there in a bit and will probably post later this evening. Remember...no news is good news. :)

~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

How's Diane?

OK so I realized yesterday when Kate from the YMCA came to visit me that while we all care about how Scott is, there are some following this blog that care about the wife too. So here's how the wife is coping, from Diane herself :)



First I have to say that over all, I and my team of specialists at the hospital: a social worker, a minister and Scott's nurses, all feel I'm handling things very well given the situation I'm in. Come on I live in a Hospital, I'm not the queen of cheerfulness by any means, but I'm good. I, right a long with Scott, have had ups and downs. I have experienced a wide range of emotions and often times they change every minute. They range from shear panic and fear to extreme joy.
~ One example is this brain stem swelling on Wednesday. I'm not sure if everyone gets how extremely serious this was. I sure didn't. It was a Brain Stem Herniation and if it continued to 'sink' he would have become brain dead. Luckily it was caught at the beginning of changing and measures were taken to stop in from getting worse. These measures worked...for now. Obviously he's awake again. I can't tell you how exhausting & difficult Wednesday was. But what a difference a day makes! Pure Joy came after shock and panic! Yes, God is hearing and answering all of our many prayers! I see it first hand each minute I'm in this hospital.

With Betsy getting strep throat, I had to find a doctor for me and get tested as well. Carolyn, one of the monitor techs, got me an appointment at an office here in the Medical Center. I now have a doctor of my own. Dr. McHugh is great! He found no strep for me, gave me meds to help with my allergies, and sleeping. (I had to NyQuil it up Wednesday night. He said while this method works, he'd rather give me a prescription sleep aid) But most of all he talked to me about me. He said it was OK to get out for a little bit. He told me it was safe during the day and gave me ideas and directions on where to go. He is at least the 3rd person who has told me this. My bishop tells me every time I talk to him, Claudia the social worker also tells me this and gave me places to go. I think I'm finally ready to listen :) I also can't explain how much it lifts a burden to know I have a doctor here in Seattle. Dr. McHugh said if I need to see him for anything, all I have to do is call and they will get me in right away! What a lift in moral.

With Kate coming to visit, she took me on a walk around the hospital to find food near by. I can't believe I've been here over 2 weeks and didn't know how many great little places there are with in walking distance! Thank you Y family for the food money, you can bet I'll use it to eat at the many places Kate found for me! I think I'll plan to run there and walk back, a little exercises will be good. On that note she feed me well. I can't tell you what the change in Scott and the full belly has done for me. Actually like I told the surgeons this morning, I finally feel like a real person again.

I do want to add that without Kate yesterday, I don't think I'd be as joyful as I am right now. It is amazing to see Scott awake but it also makes me sad. NOW as I told Dr. Husby I love Sad over Scared. He agrees. He is also in the I feel sad that's Scott's aware of his surroundings but can't do much about it, and being stuck in a bed barley moving hands and feet looking and the ceiling, that is enough to depress anyone. So he's getting a mild anti-depression med now. He's also getting Twilight read to him. I started Wednesday...I'm pretending that's what woke him up & not the doctors measures....hehee I told him I will continue to read to him until he can tell me to stop. That should get him off the ventilator faster than anything! Just so you know I did ask if I could read to him, click your toes together for yes. He clicked I read...too bad he doesn't get a choice of the book. Wow mean wife.
OK he's back from a CT. Dr Newell, who is 'The Man' when it come to neurosurgeons, wants one to just to see how things look. So I'm going back to reading.
Diane

Day 16 Morning Update

Overall....BETTER!!!! I'm not saying he's going to be up and eating Bon Bons tomorrow (do guys even do that?)...but he is improving.

The neurosurgeons said he's 'clinically' better today. He's pupils are responding more normally and he's following commands better today. Poor guy had to have the arm restraints put back on though because his naturally reflex is to reach up and want to pull the tube out of his throat. I seriously hope he doesn't think we have him in a mental hospital with those on. :) At least we're back to some kind of reaction and I hope they get to take the ventilator out soon. That's one of my questions for today. I will try and post a list of all the questions I want to ask later this morning.

When you look at him, his head is a little more swollen today. Doctors said that is to be expected after what they had to do yesterday and the position they have him in. No worries though, this is a different kind of fluid getting to his head, and will make him heal faster. No CT planned for today because the doctors can tell by other signs if the bad swelling is getting worse. That's a good thing.

Although we seem to have reached some kind of turning point, the doctors did tell Diane that Scott's case is not a text book case. I'm not sure if it has to do with his kidney disease or not, but when this normally happens to someone, they don't usually get all the things Scott got. Remember, we had to deal with higher BP, high temperature, pneumonia, swollen brain stem, excess swelling in brain, LP, higher HR, Staph/MRSA scare, multiple infections, not wanting to wake up very easily, PKD, and the main thing....what caused this? If there is no aneurysm and it was a brain hemorrhage, why? What is the likelihood this could happen again (not sure if we're ready to hear the answer to that one)?

~Betsy

Day 15 Evening Update

You know, I kind of like the fact that there's not a whole lot to post tonight. That means his day was nice and calm. No news is extremely good news at this point.

I just got off the phone with his nurse and she said he's had a good day. They placed his new feeding tube today and that went really well. She said they had to sedate him a little for that and that he was resting at the moment. He's been waking up pretty well today and following commands by squeezing hands and wiggling toes. She even said she saw him wiggle his left toes...even though it was slight. This is great because we have known from the beginning that the left side was more affected than the right.

His temp was down to 98.8 just now and has been pretty low all day, despite it being higher during the night. It's obvious that the temp is still an issue but hopefully with each passing day, it gets better and better.

I don't foresee any major changes through tomorrow, so I'll call it a great day and hope for an even better night.

~Betsy

Day 15 Morning Update

Scott had a GREAT night!

Isn't it weird that 15 days ago, we'd never have thought about being so happy to have Scott open his eyes and follow some commands?

Or be so excited to hear the doctor say his chest x-ray looks fantastic?

Or be so thrilled to have the doctor say he might not need the tracheostomy at all anymore?

Or be so glad that he did a breathing test on his own for 2 hours?

Now, obviously these are great things but as we've learned from all this...it is just one day at a time. But, we're happy about the beginning of this day! Scott will be on antibiotics for a couple more days and is still getting his new feeding tube placed today. Let's just cross our fingers that he continues to improve so he can come off the ventilator soon.

~Betsy

Step Forward, Diane

I have to post this morning because I want to shout from the roof tops and well there's enough people reading this that it's like I am....
I walked in this morning to Scott having his eyes opened!
Around midnight last night he started doing better. He follows commands and keeps his eyes opened a lot more. He is even moving his hand and feet on his own. A mix of all they did yesterday for his brain stem worked.
Look for Besty's post later after Med rounds to get all the info on how he is and what the plan for the day is.
Yay! Two steps back make the one step forward feel SUPER AMAZING!
Diane

Day 14 Evening Update

Can anyone believe that today marks the end of two weeks since all this started? We start week 3 tomorrow and I honestly don't know where the time has gone.

Here's the breakdown of today's events.

There were decisions made today to help Scott that you should know about.

1. He is getting a new feeding tube place tomorrow. Right now, he's got a feeding tube going up through his nose, which can be uncomfortable and I think can also get prone to infection. So, tomorrow, they are placing a new tube, using imaging/radiography, to place it directly into his small intestine (I believe, not his stomach - I will make sure). They will leave it in for 4-6 weeks, even if he doesn't need it so that a callus can form. That way when they take it out, there's no chance of leakage.
2. They are going to be doing a trachestomy on Friday afternoon. I will be posting more on that after it happens.
3. He had a blood patch done today. This is the first time I've mentioned this because it was something we weren't sure they would be doing or not. You can read more about it by clicking here. It went well and they said that it may or may not help, but there was really no harm in doing it.
4. His MRI results showed some swelling of his brain stem. The neurosurgeons said that this is to be expected, but it's not the best thing to happen. They are doing everything they can to minimize this pressure, including giving him some more Mannitol . Just a side note here - they were giving him Mannitol quite a bit over a week ago and haven't really had to give him any since his LP last week. I had asked, 'if you know this drug really helps his brain swelling go down, why can't you give it ALL the time?'. Well, that's where the lovely PKD comes into play. They don't want to give him too much of anything that may damage his kidneys. Arghhh.....
5. His CT scan from this morning showed a slight increase in swelling (yet another reason for the Mannitol) but I think this is to be expected. I remember the nurses telling us that it can be a roller coaster ride....lots of ups and downs.

Whew! American Idol is on and I'm going to go sit down with Farmer and try to relax for a bit. As always, more tomorrow. :)

~Betsy

Strep throat alert!

So, I have some news about me tonight. I know, this blog is about Scott's recovery, not me...but I just found out I have strep throat. First time in my life and my throat has hurt 10 times more before and I never had it. I normally wouldn't have even gone to the doctor but was told by both my loving husband and mom that I should probably go have it checked out, just in case. Yup, it was postivie. Think stress is getting to me?

If you've been around me lately and start to get a sore throat, please go get it checked out. I'm contagious until I've been on antibiotics for over 24 hours, so my plan to see Booger tomorrow is out.

Not that I need to remind anyone, but if you have flu, cold, or sore throat symptoms, let's stay away from Booger so he doesn't end up with just one more thing.

~Betsy

Day 14 Morning Update

I just got off the phone with Diane and just wanted to quickly let everyone know that not much has changed since last night. He just went down for another CT and the MRI didn't show anything significant. I will try and get some more info on that.

They did another breathing test during the night and he did pretty good. Diane said his oxygen number on the machine is down to a 40, which I believe means the machine is giving him only 40% oxygen and he's getting the rest on his own. This is good, considering the number used to be much higher.

He's still not responding the way 'we'd' like him to. The doctors aren't overly concerned yet about that, since they said it can take a while for the drugs to wear off. Also, having just a slight temperature can make his body work too hard to wake up easily. I think we're all just a little frustrated that he's not waking up very quickly (and when he does it's for about 1 second), especially knowing that the sedation meds are turned off. Then again, I ask myself, would I want to wake up very well if I had a tube down my throat?

~Betsy

Day 13 Evening Update

Not much has happened since I last posted. He did have his MRI this afternoon. The internal doctor told Diane a little bit about it but I feel more comforatable posting more after the neurosurgeons do their rounds in the morning. No worries, just don't want to post something I'll have to correct later. :)



His temp was down to 99.4 this evening and he is having a little more vasospasms today. So, they increased his BP again to help pump those blood vessels up (remember water hose?).



My aunt asked how increasing his BP affects his kidneys and I will make sure I find out more details on that. I do know that his creatinine level was at a 0.9 today, but was up to a 1.9 the day of surgery. Just so you know, our Uncle's creatinine level was at a 7.5 the day he had is kidney transplant last November. Knowing that, I'd say Scott is doing pretty good. The doctors are obviously focusing on healing the brain right now (and I get it) but for the rest of us Cruickshanks, in the back of our mind, we worry about the kidneys too. Even when Scott is fully recovered (and he WILL be fully recovered...you got that Booger?), he's still going to have PKD.



Tomorrow brings a new day and we are so thankful that Scott's with us and that things are improving. I will post more on the MRI results and anything else as soon as I know. Night night.

Day 13 Mid-day Update - (MRI TODAY)

Update to this post....Scott is probably just finishing up having an MRI today (3:00).

Sorry this post is late this morning....I think the main reason is because there hasn't been very much change since last night.

He had a restful night. Had a breathing test this morning for about an hour and only had slightly raised BP and HR with that. The breathing test is done by turning off the ventilator to see how he breaths on his own. We're pretty sure that even though he does a pretty good job with that, we're still looking at having a trach placed this week. This will help him transition easier to breathing on his own. It will also make him more comfortable when he does wake up. Again, could you imagine waking up to having a tube down your throat and not panicking?

He had a CT this morning and that came back fine. The swelling is going down and the brain is 'settling' back into where it needs to be. No major changes and pretty much where the surgeons figured he'd be.

One of the main doctors (the internal guy - he deals with everything else going on with Scott) wanted to get an MRI soon...so that may be today. I've gotten pretty used to them telling us they want to do something and then it doesn't happen that day due to one thing or another. So, if he has an MRI, I will give more details afterwards. I will give more details of the tracheostomy (tracheotomy is an incision into the trachea (windpipe) that forms a temporary or permanent opening which is called a tracheostomy - I had to look up what the difference was in spelling) later also.

I can't remember if I'd mentioned another thing that's been going on and that's his blood count. He's got anemia right now and they've been keeping a close eye on that to determine if he will need a blood transfusion. This is still a possibility but Diane said that his blood count is up today...so that's good. We'd obviously like to avoid any procedure we can. I really don't want to see him have horse blood and start 'neighing' all the time....just kidding.

As always...more later. :) Thanks for reading!!!!!!!!

~Betsy

Q & A Time

We are going to have a meeting on Friday with some of the main people helping with Scott. A doctor, nurse(s), care management, etc. will all be there. This is a chance for some of us to sit down and talk about what the plan of action is for Scott. We are probably going to go in there with many questions and I thought I would open this post up to all of you to ask questions you may have regarding what's happened to Scott and what the future holds (as much as we can know at this point). Please feel free to post as many comments as you want, ask questions you have and if I don't know them, I will either find out that day or ask at the meeting we're going to have. This is a very confusing time for all of us and there is so much we just don't know. Hopefully we'll be better educated after this to be able to explain to Scott what he's been going through. If we think we're confused, just imagine what he's going to be feeling....poor guy. As always, our energy is on him and making sure he's not scared or confused when he is more aware of his situation. We love you Booger and can't wait for you to truly be with us again.

~Betsy

Day 12 Evening Update

Couple things going on today...

Sedation:
Scott is off of sedation today. :) This is a good thing, only he's not responding the way they'd like him to. As of last night through this afternoon, he was harder to wake up than he was this weekend. The nurses/doctors said that the increase in his temperature makes his body work harder and that could be why he's not waking as easily. Also, the amount of sedation he was on and how long he was on it could be playing a role in that.

EEG: He was having an EEG when I got there this morning. They want to make sure he didn't have a seizure last night and rule out if that could be why he's a little harder to wake up. The neurosurgeons have to read the results and that could take a little while, so once I know, I'll update.

ICP Sensor: They took out the little sensor/tube thing-a-ma-gig in his head today. That's a good sign that the swelling in his head has gone down. His head even looked more concave than it did this weekend.

Two main things we need for him here:
1. We need his temperature to regulate and be normal. He heals so much faster without a temp.
2. We need him to wake up easier and be more responsive. The neurosurgeons did say they are happy with how he is responding neurologically (pupils reacting good, tracking with his eyes when awake, and squeezing their hand).

One of his best friends from high school, Jake, asked us last night if we get to call him the 'Booginator' now that he'll probably have a metal head. Hmmm...we'll have to see how he likes that. LOL!

~Betsy

Day 12 Morning Update

Scott had another good night. They have him off all his sedation right now but he still has a lot in his system, so it takes a while for him to respond. The surgeons did their rounds this morning and said he is doing very well neurologically. He's where they expect him to be, is eyes react normally and he is trying to move his toes and hand. They did another breathing test in the early morning for about 45 minutes and he did well, even though he still struggles a little bit. Since he still has a little temp, the doctor said that can make him slow to wake up also. They will continue to test for vasospasms everyday and I'm not sure if he has a CT scheduled for today.

We are all just looking forward to when he's more awake and then we can focus on the next step of treatment. Come on Scott....you're doing great!!!

Double CT Day

Again, today was a pretty good day. He was more responsive this morning when they brought his sedation levels down. His heart rate is staying down when it needs to and his pupils are reacting normally. He wasn't as responsive this evening, so they did another CT scan. Doctor said it looked good and that the slow responding is most likely due to the sedatives still. He's got a slight temp again this evening, so I'll let you know how that is doing in the morning. Overall...much better than he was a couple days ago. We'll take that and go with it!

And how about his little kiddos? Well, they spent the night here on Friday and we got to go to the park Saturday and again today. Coby is obviously a little confused and missing his daddy. He wanted to sit on Farmer's lap quite a bit and it kindof makes you tear up to watch, knowing how much he needs that. If miss Cora was confused, you wouldn't have known it. She was her usual little self and had a great time playing at the park and with Jack. Here are a couple pictures of them while I was with them. :)

~Betsy

The many thoughts of Diane

Ok so first which is really last.... I got to the end of rereading this and realized I want this part of the story 1st not last lol
I can not begin to describe the Awesomeness of this Hospital! They truly are here for the whole thing. I know Scott is in the best care because every single hospital worker is great! The lady who cleans, asked me how my husband is doing when I was in the hall! She remembered me enough that she could ask even when I was not in the room with him! From Surgeons to Doctors to Nurses to Respiratory Monitors to Ultrasound Techs to the people at the Desk (I know how important they really are cuz I'm one) all who have been many different people. They are all great at taking care of Scott first and yet me as well. From Claudia the Social worker to Andrea the Care Manager to Mark the Chaplin who are all here for me and the family. Wow what a huge relief knowing I have people in the Hospital for me

It's Sunday afternoon & I'm back in 'the room'. I was able to spend the last 24 hours with the kids. We went to spend the night with my grandma in Arlington (where I grew up/Scott & I lived when 1st married, for any who don't know) I took the kids to see 'Diary of a Wimpy Kid' downtown with g-ma, Christina (my older sister) and her boys. It was so great to have them with us. Tanner was a great distraction for Coby. Going to the movies is a very usual thing for our family to do. We love movies and anytime we're in A-Town & Norma's playing a movie we've considered seeing, we go. The prices are amazing, the candy selection is huge and well I worked there all through High School, how can we not go. Cora was very cuddly and had lots of comments on the movie, which was great it kept me from thinking about Scott and how he should be there with us. I did have a few of these thoughts none the less :( It was great to sit & chill with the kids .Then I was able to sleep in between them last night which was a treat in it's self.
We were able to go to church this morning before heading to Besty's for the kids swap. It was really nice to do something normal. Coby sang the songs so well today, which is something Scott has been working with him on during church at home. It was so amazing to hear his voice and know he was reading the words as he sang all because his dad knew it was important. (Coby sticks pretty close to Scott and Cora sticks pretty close to me during sacrament meeting) I had them both laying on my lap most of the meeting playing with their hair. What a sweet experience to have them close & quit while hearing about how keeping the commandments of God brings blessing and makes us happy.
I agree! I'm sure many people have been asking "How could this happen to Scott?" "Why him" "He doesn't deserve this!"
All I can say is, I see the blessings & the answers to prayers that this has brought in our lives already! It's too difficult and way to personal for me to share, but know that yes this experience has answered some of his specific prayers... just not in a way he or I would have expected!

Scott and I were planning to go to the temple this month and as we were in the ambulance driving over my mind was racing from one thought & prayer to the next. I could not help but pray as hard as I could for the Lord to allow me to keep Scott. I kept thinking what will I do if we loose him, and automatically thought I will not! I can't raise our children without him. They have to learn things from him that I can't teach them. My prayers turned to the Lord and I remembered that we were planning to go soon. I automatically thought, sweet I will be able to go to the temple more often with being so close to Bellevue. As we got closer to it, if you don't know you can see the Latter Day Saints Temple from I-90 really well at night, I got anxious to see it. I needed it's calming feeling. Once I saw the temple I got the overwhelming feeling to go ASAP. So I made a plan to go Saturday morning. As we have learned in this 'room' time flies very fast in here. I was finally ready to go & he was agitated when I went in for a look before I left. I started thinking, it's more important for me to stay here with him in this state. I can go another time, even later today. But I got the distinct feeling that I needed to go now. So I turned to mom & said get me to the temple. We were able to go and have a wonderful experience there. But once I was ready to go, I was ready to go and panic set in. For the 1st time ever I got out of the temple as fast as I could for an update. I'm sure Besty was a bit shocked to hear my voice with such panic as I asked how things were. They were as good as could be expected. Ah finally back in 'the room' with Honey. I know I did what the Lord wanted and I believe Scott was blessed by my obedience to the commandments.

As we all know the week was full of ups and downs. I remember going to bed on Wednesday thinking it is going to be so long before things turn around and he has good days. Then Thursday hits. It was a very scary morning for me. I heard the word LP and thought about the show House. It always seems like a huge deal if you're to the point of an LP. I automatically called my mom and told her she had to go to the temple as soon as she could that morning! (she is in Utah visiting my sister Caroline. She has had the tickets to go for months & I told her I needed to to still go, mainly it was so Care had some family. I know always looking out for others. But I also needed my mom where she could be free to go as I needed her to.) She told me the night before that Thursday was sitting to work on genealogy day. I heard LP & thought sorry moma genealogy day is turning into temple day. When I told I needed her to go she had not hesitation she walked the mile or so to get there and actually spent most of the day serving the Lord. Later she told me, "I know the Lord will bless Scott to make it through this experience." I can't express the gratitude I have for my Heavenly Father for blessing me with the one thing I need at this time... My Loving Husband to stay with me!
I know that the time of it was a blessing as well. I can't express how many things have fallen into place where the person I needed hep from was able to help so easily & yet if this happened even a week later that would have been much more difficult.
I'm beside myself to think that I have also been blessed by so many people in our life with help, support and prayer. I can't express the feeling in my heart for each of you who have supported our family in this trail. To all those who follow this blog. Wow I am touched that you care enough to see how we're doing.

I have a few thoughts I'd like to share.... I know I know after that book, she still has more to say? Why of course. Ask anyone who has had the pleasure of reading an incident report I've written at the Y how much she can say :)
I'm not sure how many know, but I had to stay in 'the room' when they did the LP. I was so scared. They had to sit him up because he was not stable enough for laying down. It was not an easy thing. Almost 200lbs of sedated weight, it took 4 nurses to get him up. Oh I say I had to stay because, well I had a choice to be in the room and well it was a do you stay & know what was happening or sit in the waiting room with no idea. I had to know, so I had to stay. But staying was not easy. By the way a huge Thank You to Dr. Schubert the Neuro Surgeon/Fellow that did the procedure. He took the time to come tell me it looked much worse than it was ans he took lots of time to explain the whole thing to me afterwards.
I had a little church guide book in my bag that I had to read to keep me distracted. I came across a few phrase that really helped me. I know that although our currant trial is way more obvious than most people have, I'm not oblivious to others having struggles in their lives. And if you're like me they feel huge...until you find yourself sitting in the hospital. So here they are. I know that many who read this do not believe exactly as we do, but I hope that these thought bring you comfort, because it is all I can do after all the many things you have done for us. Even if all you have done is read our postings, you have been a strength to our family.
These are all from 'True to the Faith, a gospel reference" for the Church of Jesus Christ of Latter Day Saints. Wow my English teachers over the years should be happy, I sited a source on an Internet blog lol

Thoughts:
-Adversity will vary, one response should always be constant, your trust in Heavenly Father and Jesus Christ.
-You do what They require even when you desire something else.
- He may allow you to wait so you can continue to learn and grow.
-Find comfort...the Savior understands your trails perfectly. He has experienced your pain, He knows how to help you.
-Your success and happiness, both now and in the eternities, depends largely on your responses to the difficulties of life.
-You may simply need to be patient and faithful.

If you made it to the end of this posting, I congratulate you with my love and gratitude! Diane

Day 11 Morning Update

Last night went really well. They did a 'breathing' test for him around 4 am. This is where they see how well he breaths on his own...he did this for 1 hour. :) This is probably the first of many tests like this to see how he does. He was awake more last night and was able to follow the nurses finger with his eyes. They also asked him a series of yes and no questions that he was able to shake his head to. One question they asked him was if he was a pilot or not. He looked at them like they were a little crazy. Then they asked him if he painted cars and he nodded his head. Way to go!

He was having a CT scan this morning so I'll post results of that later today.

Nurse Jen said that there will probably be many days where I won't have anything to post...pretty boring and low key days. That's fine by all of us. Beats the alternative of posting not so positive things.

~Betsy

Nice, Calm Days...we like 'em. :)

Thank you to everyone who had Scott in your thoughts last night. As of right now, today was a much calmer day. YAY!!! I think we got what we wanted and needed, which was to see some improvements and not see any more surprises or side-ways turns in his condition.

I got the run-down from Jen today (thank you Jen....you are all soooooo awesome!) and she said he is a lot calmer than he was when she had last seen him a couple days before. His ICP has stabilized and doesn't go up a whole lot when they move him. This is really good. His blood pressure is high, but this is what they want right now (remember vasospasms?). She said he didn't have any vasospasms today...yipee! Also, his heart rate had calmed down and he just looked more peaceful today. AND...they took his drain tube out of his head on Thursday, one less thing.

They did a surprise (well, surprise to us) bronchoscopy this morning but Diane said it was really fast and easy. It went real well and they didn't get a whole lot of stuff up from that. This is good as well. And, they were checking to see see if he had a clot in his lungs and he doesn't (really good). He's still on antibiotics and still has pneumonia, but doing better. They were able to back off his sedation a little more today and will continue to do so just as long as his vitals stay good with that.

Mom was in his room just a while ago and they were suctioning his throat out. When they do that, Scott starts to cough (as much as you can cough with a tube down your throat). Mom started to back out of the room (believe me, it's a little/LOT hard to watch) and was just standing at the entrance when the 'respiratory lady' (I really need to find the real job title for this person) said, 'Mom...come here. He's got his eyes open'. Mom got to see him like this for a tiny bit and tell him that everything was going to be ok. Diane has gotten to see him more like this but mom and I hadn't seen him really open his eyes since last weekend. Ahhh...feels better.

Also, nurse Jen was really funny today because she thought he actually rolled his eyes at her! Ha! She was moving him a bit and he was probably thinking, 'ok, lady. This sucks for me. I have no privacy. Just do what you need to do and let me go back to sleep'. At least Farmer and I like to think this is what was going on. :)

Oh, I just got off the phone with mom and she said that Erin (night nurse) came in and said to Scott, 'Scott, I'm going to check your pupils now'. He just opened his eyes, just like that, and let her do it (they've always had to lift his eyelid to do this). He also squeezed her hand and wiggled his right toes. His vitals didn't shoot up or anything. She turned to mom and put on this big grin and told her she really likes it when they start to turn around.

****Have I told you why they check his pupils? They are making sure that they react normally and that they are the same size. If they don't respond properly or are different sizes, this is the first indication that there is excessive pressure. This is one of the main reasons they knew they had to do surgery right away last week. His pupils were not the same size...not good. But, they're the same size now...nice. Also, this will tell them if something is wrong before the little ICP sensor in his head will tell them.

Speaking of the nurses, I haven't met all of them but of the ones I have met, I personally love them all. Paul, Heather, Erin, Kristia, and Jen...you are all so informative and most of all...you're calm. Your calm nature helps this family be able to relax (as much as we can) and truly take it one day at a time. Thank you for always answering our many, many questions without us feeling like a burden.

We are all learning from this experience. Learning not only medical terminology, brain issues, healing, recovery, but also that the cafeteria has the best $1.25 tacos I've ever had! I'm telling you, next time you're in Seattle and you need a bite to eat, swing by Swedish.

Day 10 Morning Update

He had a good night last. His nurse, Jen, said they gave him a 'sedation vacation' for about a half hour last night. This means they lowered his sedation long enough to get him to wiggle his right toes and squeeze their hand. She said the night nurse thought he even nodded to some questions she asked him. This is a good thing. His temp was down again and his ICP was good also. We're heading down there now and I will post later. Like I said last night, the goal today is to just take it easy and heal, heal, heal.

~Betsy

Day 9 Evening Update

Whew...sorry this is so late but we just got home from seeing Booger. I've got quite a list for you tonight. Here we go.

Good News

• His ICP has been low pretty much all day. Fluctuating between 5 and 8 mostly.
• His LP (lumbar puncture) results show NO MRSA or Staph!!! This is very good news for him. (Disclaimer: They have him on antibiotics and wanted to let us know that there is still a possibility and they will know for sure in a week or so....but, I kind of think they just want to tell us that just in case there's the very small chance he does have it. It's pretty important to not let us get our hopes up over anything....more of a hospital liability thing going on here.)
• He didn't have as many vasospasms today. They've been keeping his BP higher on purpose to help with the vasospasms and it's working. Basically, think of his blood vessels as a garden hose. Think about what happens when that garden hose has a kink in it or has something sitting on it, the water doesn't flow as easily. So, if they increase his blood pressure, it increase the blood flow to his brain and helps the vasospasms from happening.
• The doctors started alternating his Tylenol with Motrin. This was something they hesitated about because ibuprofen is not healthy for his kidneys...but his temperature really needed to go down. They took off his cooling devices since they were giving him the chills. When we left his temperature was at a normal level (maybe slightly high...but good). If his temperature stays down, he will heal much faster.
• His chest x-ray looked better. Still has pneumonia and they are treating that...but it is improving.

News we'd like to not hear as much

• He is still very sick. :(
• They most likely will not be able put his bone flap back on. Yes, you read that correctly. That means we're probably looking at a metal plate and he's going to beep like crazy at the airport now. Since they did find something on his flap (Ahem....MRSA), they can't put that back on. Can't risk that. We're obviously just finding this info out...so there will be more details later.
• The ventilator is becoming more of an issue now. They are not designed to be in this long and so we may be looking at a tracheotomy being placed next week. Again, I am just trying to give you as much info as I can and don't have all the details yet.

Overall, today was a better day. We're more positive after seeing him and talking to his nurses today. The goal for the weekend is pretty much the same... keep him calm so he can heal. I asked the nurse if any tests were planned for tomorrow and she didn't think any except the ultrasound to detect any vasospasms.

~Betsy

Day 9 Morning Update

CT and Lung scans are done. He had them done about 1 am, since he was doing good and there wasn't much else going on at the hospital that late at night. Sounds like those came back about the same as last time...not worse. I was hoping to hear that they were a ton better.

They took the cooling system off of him because his body was getting chills and that's not good for him. The doctor was going to look into alternating between Tylenol and Motrin for his fever. The only thing is that ibuprofen is not good for his kidneys, so that's another thing they have to take into consideration.

They are doing the ultrasound scan right now to detect how his vasospasms are doing. I will update on the results of that later.

The staph/MRSA is another thing we're trying to get answers about. Hopefully he doesn't have it and it's just the bone flap that does....then there's the question of how to treat the bone flap before putting it back on.

I feel like I'm starting to sound like a broken record lately. Mom's on her way over right now with Coby and Cora. They'll be hanging at my house today with either my Aunt Pat or me...we may have to make some cookies. Yum!

~Betsy

specific need

I can't say how much I loved logging on & seeing the last post from Besty. Unfortunately I need a more specific & sooner prayer said. I don't know if you're like me & find it easier if you have a need in mind but here it is...He needs to be stable enough to get a head and chest CT. He has not had one in the last 2 days & a lot happened today. They need to know what's going on in his head & chest and to do that he has to be able to stay stable while lying down for the length of the tests. I just watched them lay him down for around a minute to move him & he was not stable. They have room to up the sedation and he only needs 5 minutes for the test. So once you read this help me pray or whatever to help him get these tests done sooner than later!
Diane

Please Join Us

I am sending a shout out to everyone you know.

Tomorrow night (Friday) at 8 - 8:05 pm (PST for you Easties). Please join us in either prayer, thoughts, good vibes, whatever you want. Let's get the powers together and have Scott on the agenda. What happens when you get hundreds of people together? I know there are a lot of people supporting our family from different beliefs, but please whatever you believe, please join and let's do whatever we can. We need a turning point in the right direction. We need Scott to have something significant happen. We miss him, We need him. We all play a different role in Scott's life. Wife, mother, sister, children, BFF, mentor, co-worker, friend. Please, have him in your mind tomorrow night at 8:00...I'm asking for only 5 minutes. What can it hurt?

~Betsy

Day 8 Evening Update

I still can't believe it's been over a week since all this started. Time is a blur right now.



Let's see if I can get all this info that is piled up in my head straight and typed out correctly.



Where do I begin? His ICP has stayed pretty low today, but Diane said she learned that the sensors that are in there are not designed to stay in this long...so, those #s could be off a little bit.



They found Staph and/or MRSA on his bone flap that they took off and want to do further tests on that to get more answers. The LP results take 24 - 48 hours, so once we get those back, we should know if his body has Staph or just the flap. If it's just the flap, well then, that's a whole other issue (umm...cross contamination anyone?).



They have him sedated for the night to make sure he is relaxed enough to have his chest and head scans in the morning. It's important that we get these since they haven't been done since Tuesday morning.



His temp is still an issue. They have a new machine that helps regulate it, Artic Sun they call it (or something like that). I guess they don't have to use it very much so when they do, it's a big deal. :(



Like I said, one step forward and 2-3500 steps to the side!

~Betsy

Day 8 Mid-day update

Just got back from the hospital. Here's a brief re-cap.

Good News:

• The LP went great! He tolerated sitting up (with the help of lots of nurses since he's obviously still sedated) long enough for this to happen. His ICP dropped dramatically as soon as they took some fluid out. Went from being in the high teens to being at a 5 when I left about an hour ago! That's great!! We won't know the results of the LP until tomorrow.
• He's been having vasospasms the past couple days and this was one of the reasons they really wanted the SPECT. But, today showed that the spasms had decreased, so they don't feel it's as urgent to get the SPECT. Since they can really only do one test per day (because that's all he's been able to handle), they will try and get another CT instead.

Not the Best News:

• His lab tests came back on the bone flap they took out. They found Staph on it, which is confusing because how did it get there? Did he have it prior to surgery or did it happen in surgery? Lots of answers still to come since they had just found this bit of info out right before I left. So, this means lot and lots of hand washing and 'gelling' (anti-bacterial gel they've got ALLLLL over the place). No eating in his room and no kids, since it is contagious.
• Also, we've got the issue of bed sores already. He doesn't have any yet...but the specialist noticed areas that look like they will become something. So, they want to switch his bed today to a bed that I believe moves air around to different areas to stimulate different areas of the body. This was just done around 2ish...went smoothly! YAY!
• His temperature is still an issue and that is being constantly monitored with a new cooling device.

My mind is becoming over whelmed with all the information and I find myself forgetting to ask questions that need to be asked. I keep telling people that when we have one step forward, it seems there's always another step in the direction that's not quite as forward...let's say off to the side. Sounds better than saying 'backwards'. :)

~Betsy

More coming later

I'm on my way down to the hospital this morning and will do an update in a little bit. He's having an LP (lumbar punture) today and I want to be there for that and hear what they say. At least we 'think' they are doing that. It's frustrating for everyone to hear they are going to do something and then they don't do it. Just one hour at a time, right?

~Betsy

clarification from last night

He does still have infections in his lungs. They are pumping antibiotics in him to treat the infections, there are a few different ones. What they are thinking is that the fever is not related to these infections.
Ops getting medical info is not always easy to explain later. Diane

Day 7 Evening Update

Here's a quick summary of today. They are still battling his temperature. The nurses have been putting cooling blankets under him because that seems to cool him off the best. These blankets consist of a grid of tubes that water just above freezing runs through. There is a big machine that looks like a portable A/C unit that runs the ice water through the tubes. The cooling blankets are not designed to be layed on, so his weight will stop the flow of water, then they aren't as cold after about 20 mins. But...they cool him off better if they get it really cold, then put them under him. They also will put one on top too. They don't think he has an infection anymore, they think that his 'thermometer' is just off because of the brain injury.

They know what is in his lungs now and they are treating him for it, so that's good.

His ICP has pretty much stayed in the high teens today. They did not do the SPECT today because once again, they didn't want to have him lay flat for that length of time. When he lays flat, his ICP goes up. I'm starting to sound like a broken record, huh?


~Betsy

Thank You's, Diane

I will randomly be adding to the blog. At this point I have an extreme amount of "stuff" in my head that I want to share & will probably forget most of it. So don't be surprised at the randomness of what I post. And even more so that I probably will forget many, many, many thank yous that I owe. (the following is in no order, I hope everyone knows that I)

My beautiful Mother-in-law! Thank you for being me the kids! I never wanted grandma to have to be me but I am so grateful you can keep their life as normal & be grandma while having through the weeks that are ahead for all of us. I you probably know but I will make sure to tell you, Scott is going to be so grateful that you were able to keep his kids happy, healthy & everything else you will be doing while he & I can not. He & I would have it no other way!!!! I want anyone following this to know that I will never be able to express the many wonderful emotions this has & will brings for us.

Wenatchee Trip: The most Argh 30 hours of my life! Anyone who saw me knows I only made it through that short period of time by thinking/doing one task at a time & by Caroline (my sister) helping me stay on task on step at a time...Thank you for flying so quickly to see us & for knowing you needed to stay longer for me & so much more! Thank you Betsy & Suz (Scott's sister & mine) for being Tara and me when we could not! We both want to stay close by Scott's side...Dang it I want to be in a chair next to him the whole time saying you can do it Honey! I want to cheer him on like I do in my classes but my voice changed from calming him down to making him want to get up a few days ago so I just stand moving his fingers & toes for him cheering in my mind. (ops random) Thank you to Jodi for being me for my house, car & classes and So Much More! Thank You to Everyone who has helped us there in Wenatchee. Everyone who I randomly got to see, talk to on the phone or whatever else. I could not have made it through leaving Scott's side any other way! Thank You mommy for getting me to Wenatchee. I know the Lord blessed the situation to have everything work out perfectly for each family member. Finally to Hillary for the amazing care package! I needed a way to keep my body healthy while here & she provided with yummy healthy snacks, drinks and of course weights/resistant tubing so I can get a little strength training in even at the hospital. I must say carrying the 30 lb basket up to my room and having a snack after was an experience after so many days of no exercise :) Oh yes & Aaron thank you for contributing to the basket, I know one thing that came form you super tasty toffee covered peanuts, right? Did I check those jars out for you back in the day when I worked the peanut window (sorry YMCA/work joke if you don't know. Days of working seem so long ago & yet it feel like this happened to Scott maybe 3 day ago)

I must thank Besty for this blog. WOW what a huge relief to know that anyone who wants to know how Scott is doing can find out when it works for them...and I don't have to try to get back to a missed call. What an extreme relief. When I find out how may people are following this I realize the extent of what she has done for me...it is over whelming to say the least!!!
I just read all the happenings here I was behind on. I love to read the comments after the posts. wow it's going to take Scott forever to read all the posts & comments when he's ready...yeah for that :) I'm blown away by the love & support we have received by so many people. I was telling Hillary yesterday that the "you find out who your friends are" phrase from some country song keeps going through my head. Yes to all those who have attended one of my cycling class, I listen to country music too. Shocking right? (see random) We have always known we have a close group of friends, but the support I have received and the willingness to serve from SO MANY helps me to realized that yes we have a close group but it is much larger than we ever knew! I'm not sure if any of you know how much this will mean to Scott when he wakes to find what I'm am learning each day here. I can't put it into words, but I know he will be.....Ah I can't explain it... AMAZED, UPLIFTED, STRENGTHENED BEYOND MEASURE!!!!
Please if you read and have a thought keep them coming, through posts or even the texts. I get them all even if I don't reply, they stregthen me beyond measure.
That's all for now. darn I don't have anyone to proof this hopefully it all makes sense. Diane:)

Just a little Humor

So, my Aunt Michelle and Uncle Glenn (my dad's brother who just had a successful kidney transplant last November) emailed me a fun little joke I thought I'd share, just to keep things on the lighter side...

As most of you know, Scott's always got a joke to tell you (just like our dad did, must be Cascade Auto Center's fault!) and I think he'd appreciate it! :)

Little Johnnie Joke

Little Johnnie's neighbor had a baby.
Unfortunately, the baby was born without ears.
When mother and new baby came home from the hospital,
Johnnie's family was invited to come over and see the baby.
Before they left the house, Little Johnnie's dad had a talk with them and explained that the baby had no ears.
His dad also told him that if he so much mentioned anything about the babie's missing ears or even mentioned the word ears, he would get the smacking of his life when they came back home. Little Johnnie told his dad he understood completely.

When Little Johnnie looked in the crib, he said, 'what a beautiful baby'.

The mother said, 'Why, thank you Johnnie'.

Johnnie said, 'He has beautiful little feet, and beautiful little hands, a cute little nose and beautiful eyes. Can he see alright?'

'Yes', the mother said, 'We are so thankful. The doctor said he will have 20/20 vision'.

'That's great', said little Johnnie, 'Cuz he'd be screwed if he needed glasses'.

~Betsy

Day 7 Morning Update

I just got off the phone with Diane and it sounds like Scott's temp was in the 99's pretty much all night, only spiking to 102 once. His ICP has stayed in the higher teens through most of the night. They still want to do the SPECT today but want to wait until his ICP is lower. She wasn't sure if he had a chest x-ray scheduled for today, I would assume he would have one to see how his Bronch went yesterday. Diane said she would try and do a post today, so stay tuned....

~Betsy

SPECT Scan Tomorrow

Just a quick update on what Scott's having done tomorrow. Click HERE to read more about the test. Pretty interesting, I think.

~Betsy

Day 6 Evening Update

It's time for an update, isn't it? The doctor did the Bronchoscope today and that went fine. Scott's numbers tolerated the procedure and it wasn't a very big deal. Things that are not big deals are great! After that, they did another CT scan but this time they did a CT angio. They wanted to look for an aneurysm again and they still didn't find one. Every day they do this ultrasound on his head that measures the flow of blood in his arteries and vessels. I left around 2:30, right after we got the results of his CT scan and they came back ok. I'll try to update a little more after Diane gets there and has a chance to catch up on things.

Once again, things are pretty much the same, probably a little better. :)

On a side note, I want to apologize to all the people that have left me either wonderful emails, texts, voicemails, etc...because I haven't replied back to all yet. I really appreciate them when I read them but most of the time something comes up and I tell myself that I'll reply later. Well, later means I sometimes forget. Please know that even if I don't respond, your comments and questions are ALWAYS welcome.

McDreamy

No offense to any surgeon here at Swedish that may read this (I'm saying this because the nurses know about this site and some have read it and who knows how much they talk) but I'm still waiting to see Dr. McDreamy! LOL!!!

Day 6 Morning Update

Just a quick positive note...he just had a chest x-ray and that looks a lot clearer! A good sign that the one of many things the nurses have done is working. Suctioning, changing some medications here, tweaking some more meds there. The neurosurgeons will be making rounds in about 15 mins.

~Betsy

Day 5 Evening Update

My last post from this morning talked about how he's got some fluid in his lungs. That has started to be a little more of a concern. They may go in tomorrow and do what's called a bronchoscope. This is where they will heavily sedate him and go down with a scope and clear some of that fluid out. They'll determine that after his chest x-ray in the morning. As of right now, he does not have a CT scan scheduled for tomorrow since they don't think it will show any significant changes. I think now they'll start doing them every other day. His temperature is still there...at 102 right now. The nurse (Heather) just put his cooling blanket on him to try and get that back down. As we keep being told, it's really just one day at a time and it will be a long road.

Right now, it's about keeping him calm, stable and letting the brain heal. There will be times of the day when his oxygen level drops, where he will start having small tremors, where his ICP (inter-crainal pressure) will go up, where his BP goes up. Everything is changing all the time and it really is a true waiting game.

They are going to probably just bath his front tonight so they don't have to move him too much. I'm going to call it a night and be up and ready for the neuro-surgeon's rounds in the morning.

~Betsy

Nurses

I just wanted to say that through all of this, the nurses here at Swedish have been wonderful (we have Jen today and we had Paul Friday, Saturday and Sunday). They are always up for answering our questions and rather than just give us a short answer, they will explain why things are the way they are. They never seem to be annoyed or anything.

Another thing about the nurses here...they pretty much run the show. The doctors come in and do rounds in the morning and that's about it. The nurses are the ones that are changing the doses and making decisions on what will bring down temps, pressure, etc. I had no clue that so much is in the hands of them. They also are never out of his room for more than 3-5 minutes. They are constantly checking him. Whether it's suctioning his mouth, moving him so he doesn't get sore, tweeking his sedatives, whatever it is, they are doing it. They are amazing....THANK YOU NURSES!!!!!!!!

~Betsy

Day 5 - Morning Update

Hmmm...let's see....I spent the night with Booger last night and all was pretty calm. They came in and bathed him around 2 am. Being his sister, I stayed back in my little corner and definitely didn't watch. LOL.

He's been pretty heavily sedated since yesterday so he didn't wake up at all during that. They brought in a portable CT machine (it's crazy how much equipment is around this place) and did another CT scan this morning, which show things as stable. They are going to increase his sodium to try and bring his brain swelling down some more. He had a chest x-ray also this morning, which does show some fluid/gunk in his lungs. This is sort of to be expected. Anytime there is a respirator in and he's not moving around, this can happen. He's not able to cough up normal stuff like we are. It is an issue that needs to be taken care of, but obviously the brain comes first. They don't want to suction it out because of the fragile state of his brain. Yes, it's a concern but they can't do too much for him right now.

As for his looks, the swelling under is eye is a lot better. It's not black anymore so in a weird way, it's easier to look at him. Or it's just easier because we're used to it.

I'm hanging with him all day today and again tonight. I think we're going to play some poker for a while, and no Booger, I'm not going to let you win just because you're sick.

~Betsy

Hey, Diane here:)

Alright so I can't say I'm pulled together enough to say that this will make a lot of sense but I really wanted to post something to all of those following our family's struggle.

I am over whelmed with the love, support and many prayers that have been poured our way. I guess you don't know how many people you have in your court until you have a major trial that causes you to ask for help. On that note, Friday night when I was finally settling into try and sleep after all of the super scary 'stuff', I had my brain clear & came to a lot of conclusions. One is that I have to ask for & accept help with anything that I have a need for. I am so grateful to all those I have asked for help & have accepted without hesitation. Know that if you haven't been asked yet just the prayers and support is help enough...but know that we have a long road to recovery, so there will be many more needs.

Now for Scott's condition: Well I must say today has been a series of ups and downs. On one side the response that Scott gives when he is quickly awakened is good. He responded as the doctors wants/expect, Yay good honey the brains working. On the other side, he is very annoyed with his situation and at times...more often than not until they started heavier sedation, he tries to get out of bed, this is a very scary thing to see to say the least. The bad part about this is that his brain needs to heal and that much movement spikes all kinds of numbers that we don't want spiked. He still has a temperature but they are managing it. The nurse says that it may be an infection (which they started tests on this morning) or just the fact that his brain's thermometer is off. It something they see often, elevated temp with no cause. He is pretty heavily sedated but we still need to have a no talking or touching rule because he is very sensitive to what is happening and Dang It he wants to be involved. YAY Honey! His personality still shows after all he's gone through!
Ok it has taken me like 2 hours to write this much. I will post more later....cuz I've actually got lots to say hehehehe....anyone who knows what happens to Diane at night when she's low on sleep, should get a kick out of knowing Crazy is here to help Scott get better. wow 3rd person typing she must be a little out of it :)

Morning Update

Good Morning. Again, I want to thank you for the continuous love and support from everyone. It really means the world to us to hear from his loved ones and know that he's in your thoughts and prayers.

Mom, Farmer, and I got down here about 8:00 this morning. He has a temperature and so they did another CT scan this morning. The CT scan did show that the swelling has decreased slightly. They are giving him Tylenol to try to bring his temp down and have ice packs under his arms, behind his head and then they may put a cooling blanket on him that runs ice water through it to help cool him off. The temp could be caused by an infection or meds. So, they switched his 'sleepy' med to something else that may make it harder to wake him up. They finally gave him a decent haircut...about time! Just kidding. :)

~Betsy