Well, tomorrow is the big day for Scott! We are all very excited he is getting his head put back together and at the same time, we're nervous. I'll do a couple updates tomorrow on his progress for everyone. Please keep him in your thoughts and prayers tonight and tomorrow.
By the way, he walked (with a walker) today! 10 steps! YAY!!!! Also, he left me a message on my cell phone today and it was sooooo good to hear his voice on the phone. It'd been way too long! Love ya!
~Betsy
Tuesday, May 18, 2010
Monday, May 17, 2010
GOOD NEWS, Diane
I have been sitting by Scott's bed side day after day pretty much being his nurse at this point and I just can't help it, I have to be the one to share this news!
Scott's bone flap is HERE. It goes in on WEDNESDAY!
Wow I can't believe it is finally going to happen. He will stay 48-72 hours for observation but with that being so close to the weekend the earliest he'll move on is Monday. He will be moving on to a Sub-Acute Therapy center most likely the Marysville area, close to my mom. (I wont be able to move in with him)
I need to clear something up. I posted a mistake...OPS! We were marked as in-patient/rush on the bone flap order. It takes 3 weeks at the soonest. We are 2 days shy of that so it really was fast. The reason for the time: The company is in Atlanta. The doctors here send a CT scan of Scott's head, they put the info into their computer and send back a 3D image of what it will look like. Scott's doctor looks the image over comparing it to the CT's they have of Scott and then send the signed off image back to this company. Now they are ready to use the 3D image from the computer put it into there machines and create a porex bone flap that will fit into Scott's missing piece of skull. They make and ship 2 just to be sure if something happens there's a back up. Ok Ok I get why this takes weeks now.
Hooray more steps forward....I don't remember if Besty said Scott stood up yesterday too :)
Scott's bone flap is HERE. It goes in on WEDNESDAY!
Wow I can't believe it is finally going to happen. He will stay 48-72 hours for observation but with that being so close to the weekend the earliest he'll move on is Monday. He will be moving on to a Sub-Acute Therapy center most likely the Marysville area, close to my mom. (I wont be able to move in with him)
I need to clear something up. I posted a mistake...OPS! We were marked as in-patient/rush on the bone flap order. It takes 3 weeks at the soonest. We are 2 days shy of that so it really was fast. The reason for the time: The company is in Atlanta. The doctors here send a CT scan of Scott's head, they put the info into their computer and send back a 3D image of what it will look like. Scott's doctor looks the image over comparing it to the CT's they have of Scott and then send the signed off image back to this company. Now they are ready to use the 3D image from the computer put it into there machines and create a porex bone flap that will fit into Scott's missing piece of skull. They make and ship 2 just to be sure if something happens there's a back up. Ok Ok I get why this takes weeks now.
Hooray more steps forward....I don't remember if Besty said Scott stood up yesterday too :)
Sunday, May 16, 2010
Day 39 Update
Long space between updates, huh? The weekend was pretty busy for Scott, especially today. He had lots of visitors and that was good. More people got to feel his head...yay! Farmer and I actually went camping this weekend (I know... I know....how could we? Believe me, it was hard) and didn't make it down to the hospital until late this evening. Scott was sleeping when we got there but I think the yelling of my children woke him up pretty good. Just kidding. He woke up and had Farmer feel his head too. :) Then, all of sudden he takes off his blankets and starts to sit up! Talk about really freak us out. Diane puts on his snazzy helmet and there he goes, swinging his feet over the side of the bed and just sits there. It was awesome! It just so happened that right after he did this little maneuver, his nurse came in to do vitals. We warned her his BP may be high after sitting up and moving a lot but it was good. Another great sign....he's getting better and better.
I'll try to keep everyone updated as we hear more on when the flaps going back on, it should be this week.
~Betsy
I'll try to keep everyone updated as we hear more on when the flaps going back on, it should be this week.
~Betsy
Thursday, May 13, 2010
Day 36 Update
Today was fun. Today was busy. Busy was why this post is so late. Fun is why I'm doing this post. Scott was fun today. I was able to bring the boys in with me while we visited for quite a while. I hadn't talked with Scott for this long since before surgery. He was awake for over 2 hours while I was there and it was so nice to have a light mood, despite all that was going on. He would laugh, he would grin, he would smile, and the best part....he was really messing with me. He was messing with my head by messing with his head. Seriously. It was awful. He'd reach up and rub his 'brain'. Every time he did that, I would get chills and goosebumps all over. I'd shout, 'stop that!'. And he'd just grin at me and say, 'you know, if I push hard enough, I just pass out.'. Gross! He would reach up there, over and over, and just smile because it freaked me out. It really reminds me of the typical sibling thing where one kid does something just to hear you scream. Then your parent tells you that if you stop screaming, they'd stop torturing you. Well, sure enough, every time I'd got mad at him, he'd keep reaching up to his soft spot. So, instead of getting upset, I decided to join in. Yup. You read that right. I reached up and felt his head too. Took me a while to get the nerve but I felt the ridge above his eyebrow and was shocked. I never knew our skulls were that thick. I mean, it felt like my finger dropped about in inch. Crazy stuff.
So, after today and that experience, I'm definitely ready for the flap to go back in. Then he'll have to find yet another way to bug me. Love ya Boog!
~Betsy
So, after today and that experience, I'm definitely ready for the flap to go back in. Then he'll have to find yet another way to bug me. Love ya Boog!
~Betsy
Bone Flap, Diane
I saw a comment about what is the bone flap. Dr. Schubert, a Neuro Fellow, came in and explained the procedure to Scott and me very well, so I will do my best to explain it here. Although I have learned A LOT about Scott's many 'issues', I do not claim to know what I'm talking about lol!!!
Ok to start think of the bone flap as your skull. It's pretty much the bone that protects your brain, it's right under the skin. The Doctor said that you have the skin, the bone flap, a thick protective layer (his description made me think of it like more skin) and the brain. The procedure he will have done is called a Cranial Plastic with a Proex Implant instead of his original bone flap. This is what Dr. Newell, brain surgeon/head of neuro team at Swedish, Scott attending physician's scheduling coordinator told me. (sorry I don't look things up so no links to the info)
What is this procedure?
They will open his skin up, place the Proex Implant (prosthetic bone flap) in fitting it into the place where they removed his 'skull', secure it in place with screws (not sure what they are made out of or what they sesure it to) putting the skin back on and stitching up his skin. When it is done his hair will grow back and it will look like nothing ever happened. OK so we might be able to see a scar down his hair line by his ear.
To look at him right now his head is very miss-shaped. There is a distinct ridge in the middle of his forehead and the right side of his head is noticeably different. The shape of the right side completely depends on his position and how his brain shifts with that position. At times it is very sunken in, but usually it is fairly rounded. One of the hardest things about this is you can tell that his brain is right there under the skin! One super huge soft spot!
Why do I say procedure instead of surgery?
This is what the Neuro surgeons say...YAY. We like procedures. This is a procedure,because they are only going in to replace something. They will not even be messing with the BRAIN.
Dr. Schubert said it's really only a cosmetic thing, well and a protection thing. In Scott's case it's a little more. Very few people who have a craniotomy, part of there skull removed, experience what Scott has with having to stay in bed, hence the amount of time it took to get it here. It was ordered by someone who did not realize we were still in the hospital, usually they are like 3-4 months before going back in. I know, I know how did that get missed? Basically there are lot of hands in the pot where Scott's case in concerned.
Another huge difference is this is planned, controlled. They know what needs to be done and they know what to expect...Scott's case has not been text book. I pretty sure they are planning for worst case even with this procedure just to be safe. But that's the difference they can PLAN. Oh and that when it comes to neuro surgeries this is the easiest thing they do!
His surgery on April 9th was the exact opposite. It was not planned; it was not controlled; they had no idea what to expect when they opened his head. They had to open all the layers of the head to get to the brain and then they had to go into the brain to remove blood! This is one of, if not the Hardest thing Neuro Surgeons do.
Sorry you all got to deal with my long winded rant. I sure hope it make sense though. Let's hope his head gets put back together early next week and we can move on to rehab soon!
Diane
Ok to start think of the bone flap as your skull. It's pretty much the bone that protects your brain, it's right under the skin. The Doctor said that you have the skin, the bone flap, a thick protective layer (his description made me think of it like more skin) and the brain. The procedure he will have done is called a Cranial Plastic with a Proex Implant instead of his original bone flap. This is what Dr. Newell, brain surgeon/head of neuro team at Swedish, Scott attending physician's scheduling coordinator told me. (sorry I don't look things up so no links to the info)
What is this procedure?
They will open his skin up, place the Proex Implant (prosthetic bone flap) in fitting it into the place where they removed his 'skull', secure it in place with screws (not sure what they are made out of or what they sesure it to) putting the skin back on and stitching up his skin. When it is done his hair will grow back and it will look like nothing ever happened. OK so we might be able to see a scar down his hair line by his ear.
To look at him right now his head is very miss-shaped. There is a distinct ridge in the middle of his forehead and the right side of his head is noticeably different. The shape of the right side completely depends on his position and how his brain shifts with that position. At times it is very sunken in, but usually it is fairly rounded. One of the hardest things about this is you can tell that his brain is right there under the skin! One super huge soft spot!
Why do I say procedure instead of surgery?
This is what the Neuro surgeons say...YAY. We like procedures. This is a procedure,because they are only going in to replace something. They will not even be messing with the BRAIN.
Dr. Schubert said it's really only a cosmetic thing, well and a protection thing. In Scott's case it's a little more. Very few people who have a craniotomy, part of there skull removed, experience what Scott has with having to stay in bed, hence the amount of time it took to get it here. It was ordered by someone who did not realize we were still in the hospital, usually they are like 3-4 months before going back in. I know, I know how did that get missed? Basically there are lot of hands in the pot where Scott's case in concerned.
Another huge difference is this is planned, controlled. They know what needs to be done and they know what to expect...Scott's case has not been text book. I pretty sure they are planning for worst case even with this procedure just to be safe. But that's the difference they can PLAN. Oh and that when it comes to neuro surgeries this is the easiest thing they do!
His surgery on April 9th was the exact opposite. It was not planned; it was not controlled; they had no idea what to expect when they opened his head. They had to open all the layers of the head to get to the brain and then they had to go into the brain to remove blood! This is one of, if not the Hardest thing Neuro Surgeons do.
Sorry you all got to deal with my long winded rant. I sure hope it make sense though. Let's hope his head gets put back together early next week and we can move on to rehab soon!
Diane
Tuesday, May 11, 2010
Day 34 Update
As I've said before, I'm going to post when there's something new to post and today, there is definitely something new to post!
Scott sat all the way up in bed today. He was able to put his legs over the side of the bed, swing his legs back and forth, and reach his arms out. This is a major accomplishment since he hasn't done this in 4 1/2 weeks. Imagine not using those muscles for that long. We were told from the beginning that his left side was going to be affected more than the right. After seeing him on Sunday, it's hard to tell if there is a strength difference between the two sides. I'll tell you now that the first 2 weeks after surgery, he was barely moving his left side, if at all. They'd ask him to give a thumbs up and he would sometimes twitch his left side. We were all worried. But, once again, Scott has proved our worries wrong and is doing so well!
His prosthetic flap should be here very soon and they are planning on putting it in the beginning of next week. I'll have a lot more to post (probably twice a day again) for the first little while afterwards.
~Betsy
Scott sat all the way up in bed today. He was able to put his legs over the side of the bed, swing his legs back and forth, and reach his arms out. This is a major accomplishment since he hasn't done this in 4 1/2 weeks. Imagine not using those muscles for that long. We were told from the beginning that his left side was going to be affected more than the right. After seeing him on Sunday, it's hard to tell if there is a strength difference between the two sides. I'll tell you now that the first 2 weeks after surgery, he was barely moving his left side, if at all. They'd ask him to give a thumbs up and he would sometimes twitch his left side. We were all worried. But, once again, Scott has proved our worries wrong and is doing so well!
His prosthetic flap should be here very soon and they are planning on putting it in the beginning of next week. I'll have a lot more to post (probably twice a day again) for the first little while afterwards.
~Betsy
Sunday, May 9, 2010
Happy Birthday!!!!
Today is Scott's 33 birthday!!! Wow, man, you're old! Ha Ha!! As some of you know, I tend to like numbers, so I've figured some things out here.
Booger's favorite number is 3. He got married on the 3rd and Diane's birthday is on the 3rd. It's part of his email address. It was the number on both our race cars, two cars....two 3's. It's part of his email address. And I'm going to have to ask him if he does things in threes, kind of like how I have to do things in even numbers (I guess everyone knows about that weirdness now). And I know this is a stretch, but tomorrow marks his 33rd day at Swedish.
Mom just mentioned we need to make it our goal to have him back in Wenatchee by the 3rd of June. I think that's a GREAT idea!!!
Booger, we're so happy we get to celebrate this 33rd birthday. I know it's in the hospital and it's not our ideal way of celebrating. We're just all so happy we get to celebrate this day with you. Celebrate your life and how fortunate we all are to have you a part of ours. I hope you have an absolutely wonderful day!!
~Betsy
Booger's favorite number is 3. He got married on the 3rd and Diane's birthday is on the 3rd. It's part of his email address. It was the number on both our race cars, two cars....two 3's. It's part of his email address. And I'm going to have to ask him if he does things in threes, kind of like how I have to do things in even numbers (I guess everyone knows about that weirdness now). And I know this is a stretch, but tomorrow marks his 33rd day at Swedish.
Mom just mentioned we need to make it our goal to have him back in Wenatchee by the 3rd of June. I think that's a GREAT idea!!!
Booger, we're so happy we get to celebrate this 33rd birthday. I know it's in the hospital and it's not our ideal way of celebrating. We're just all so happy we get to celebrate this day with you. Celebrate your life and how fortunate we all are to have you a part of ours. I hope you have an absolutely wonderful day!!
~Betsy
Friday, May 7, 2010
Day 30 by Diane
I thought I'd give a little update of what's life is like on "the floor."
It's rather laid back. We spend a lot of time together lol cuz neither of us really leave this room. I found it's much harder for me to leave knowing he may wake up when I'm gone, then it was to leave in the Neuro ICU. Just so you know it's not a big deal, I really like being here for Scott and if he's not a wake I sleep, read or watch TV. It's actually nice to have down time.
Like Besty has said there's not a lot to report these days. We're kind of in a holding pattern waiting for the flap to get here. It really is funny how exciting trying new foods is for me. I say this because Scott makes fun of me every time I want to order him something. When he chooses and it comes I get really excited. Come on Honey you haven't been able to eat in 3 weeks I need you to taste again!
Sad day in that the speech therapist didn't make in today. He didn't get to try chewing food. But Scott has had a little more discomfort today in his body. He's been in bed for weeks! Can you imagine the body aches you'd have. We stretch him out a bit and it helps but he wasn't really in the mood for food today. (he still gets a solid diet of fiber and protien through his feeding tube) BUT I will say this, tomorrow we're having a little Birthday celebration and I will be sneaking him cake! Come on if you mush it all together it's right there with he's puree diet!
BTW he turns 33 on Sunday!
Lots of love and gratitude for all those following our now very chill days in the hospital of waiting for a prosthetic flap to come.
Diane
It's rather laid back. We spend a lot of time together lol cuz neither of us really leave this room. I found it's much harder for me to leave knowing he may wake up when I'm gone, then it was to leave in the Neuro ICU. Just so you know it's not a big deal, I really like being here for Scott and if he's not a wake I sleep, read or watch TV. It's actually nice to have down time.
Like Besty has said there's not a lot to report these days. We're kind of in a holding pattern waiting for the flap to get here. It really is funny how exciting trying new foods is for me. I say this because Scott makes fun of me every time I want to order him something. When he chooses and it comes I get really excited. Come on Honey you haven't been able to eat in 3 weeks I need you to taste again!
Sad day in that the speech therapist didn't make in today. He didn't get to try chewing food. But Scott has had a little more discomfort today in his body. He's been in bed for weeks! Can you imagine the body aches you'd have. We stretch him out a bit and it helps but he wasn't really in the mood for food today. (he still gets a solid diet of fiber and protien through his feeding tube) BUT I will say this, tomorrow we're having a little Birthday celebration and I will be sneaking him cake! Come on if you mush it all together it's right there with he's puree diet!
BTW he turns 33 on Sunday!
Lots of love and gratitude for all those following our now very chill days in the hospital of waiting for a prosthetic flap to come.
Diane
Thursday, May 6, 2010
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
~Betsy
Wednesday, May 5, 2010
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
I know, I know. 'Enough already,' you say, 'Just tell us what this wonderful thing was'!
Mashed Potatoes and Gravy!
~Betsy
Tuesday, May 4, 2010
Day 27 Update
Scott passed his swallow test!!! YAY!! He can officially eat applesauce, pudding, custard, yogurt....yumm!!!! Bring on the Jamba Juice!
~Betsy
~Betsy
Monday, May 3, 2010
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
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
Saturday, May 1, 2010
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
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
~Betsy
Friday, April 30, 2010
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:
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
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
Thursday, April 29, 2010
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
.............................................
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
I'm heading down there this morning and will let you know more later this afternoon.
~Betsy
Wednesday, April 28, 2010
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
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
Tuesday, April 27, 2010
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
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
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