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

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

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 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

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

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

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

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

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

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