Last week Scott and I went to a stroke support group. He wasn't very excited about going but it was very helpful for me. They had speaker come in and talk about health insurance and medicare. Although Scott has great insurance, I do not. So I will share some info I got.
If you live in Washington and have to get health insurance outside of work you can there's a group that will help you for FREE! SHIBA (Statewide Health Insurance Benefits Advisers) they will look at all plans in Washington and help you get what's best for your needs. they also help with prescription drug programs if your on a bunch of meds. ALSO if you know anyone who has Medicare, give them this info and have them look at their plan between Nov 15th -Dec 31st. Come Jan 1 they will be locked into whatever they have for the year.... I learned so much about the system it was amazing. I'm going to make sure my grandma gets with an advisor to make sure she knows what she has.... Sorry for the rant...here's the info:
SHIBA: 1-800-562-6900 OR www.insurance.wa.gov
Scott's doing so well with the shunt setting being changed. The extra fluid on the outside of the bone flap is finally going and staying down! He's finally back in the pool and lifting weights. With the kids in school now were pretty much running from morning til night too. So life on the road to recovery is GOOD :)
Monday, September 20, 2010
Tuesday, September 14, 2010
Appointment w/ Dr. Newell
On Monday we went for another follow up appointment with Dr. Newell
(this is a copy from the family blog)
What fun having multiple appointments in one day all spread out...
Scott had a shuntogram to test how the shunt is working. He came back saying "I never want to do that again! They shaved the back of my head and stuck a 4 inch needle in it!"
They have to inject gamaradiation into the shunt and watch the flow. They were nice enough to numb the spot 1st, which felt like ice cold water being injected into his head. After that was the 4 inch needle with the gamaradiation. Followed up with the pain & heartache of laying in the fetal position. (wow it's really fun to write this together while chilling waiting for the next appointment). The only thing to the pass the time was watching a small computer screen on the other side of the room to see the super slow drain of the shunt... now is the fun of guessing what that means, will it be turned up or replaced... no bets please, you'll have the answer if you keep reading lol.
After that he was lucky enough to have his CT done early. YAY one procedure in this hospital he likes. It's fast and easy. Lay down on the board have a camera circle your head for a few minute, get up and your done. Nice and Easy! The lady was laughing when she took him back and we were joking about how much he likes to have a CT.
This appointment with Dr. Newell was a good one. They talked with us a bit, turned the shunt from a 1.5 flow to a 0.5 flow. We go back in about 6 weeks to check if the flow needs to be changed again. He does have to wear a fun athletic cap to keep pressure on the outside of his skull. It will force the fluid through the shunt and allow the skin to tighten. Mostly he needs to wear it when he's laying down.
(this is a copy from the family blog)
What fun having multiple appointments in one day all spread out...
Scott had a shuntogram to test how the shunt is working. He came back saying "I never want to do that again! They shaved the back of my head and stuck a 4 inch needle in it!"
They have to inject gamaradiation into the shunt and watch the flow. They were nice enough to numb the spot 1st, which felt like ice cold water being injected into his head. After that was the 4 inch needle with the gamaradiation. Followed up with the pain & heartache of laying in the fetal position. (wow it's really fun to write this together while chilling waiting for the next appointment). The only thing to the pass the time was watching a small computer screen on the other side of the room to see the super slow drain of the shunt... now is the fun of guessing what that means, will it be turned up or replaced... no bets please, you'll have the answer if you keep reading lol.
After that he was lucky enough to have his CT done early. YAY one procedure in this hospital he likes. It's fast and easy. Lay down on the board have a camera circle your head for a few minute, get up and your done. Nice and Easy! The lady was laughing when she took him back and we were joking about how much he likes to have a CT.
This appointment with Dr. Newell was a good one. They talked with us a bit, turned the shunt from a 1.5 flow to a 0.5 flow. We go back in about 6 weeks to check if the flow needs to be changed again. He does have to wear a fun athletic cap to keep pressure on the outside of his skull. It will force the fluid through the shunt and allow the skin to tighten. Mostly he needs to wear it when he's laying down.
Wednesday, August 18, 2010
Surgery
Sorry there has been such a delay in this blog.
Scott is doing well. We knew that if all went well then we would be leaving the hospital on Saturday afternoon. That is what we did! Yay a surgery for Scott that went as planned!
Scott goes back to Swedish to have the staples removed on Friday morning and then he has a follow up appointment from this surgery on September 13th.
Scott is doing well. We knew that if all went well then we would be leaving the hospital on Saturday afternoon. That is what we did! Yay a surgery for Scott that went as planned!
Scott goes back to Swedish to have the staples removed on Friday morning and then he has a follow up appointment from this surgery on September 13th.
Thursday, August 5, 2010
A few things
Now that we have had a few days to process the whole 'you get to go back to the hospital' we both can see a few positives... BUT this is not hiding the fact that Scott is NOT happy about going back under the knife to have his brain messed with. And well I'm not looking forward to staying in a hospital over night again either.
BUT on a happy note: The fact that the excess fluid was caught before it caused any damage or problems is huge! The fact the fluid can be relieve is a relief :). The fact that Scott's going into this pain med free and wont have to take more to mask the new pains he may have, all good. Although it would have been nice to have this done while we were in the hospital or at least been told about it, having it done now is better than having it done as Scott was getting ready to go back to work or the kids just starting school. I'm sure there are more that Scott and I have come up with but I can't think of them now.
Next week we head back to Seattle. I'll continue trying to keep our family blog up to date on the family happenings. GRRRR ARGHHHH!!!!! I'm not sure that any of us were expecting that Scott would be back in the hospital again, but at least this is a planned surgery and not an emergency, which we have learned is much better!!!!! :)
BUT on a happy note: The fact that the excess fluid was caught before it caused any damage or problems is huge! The fact the fluid can be relieve is a relief :). The fact that Scott's going into this pain med free and wont have to take more to mask the new pains he may have, all good. Although it would have been nice to have this done while we were in the hospital or at least been told about it, having it done now is better than having it done as Scott was getting ready to go back to work or the kids just starting school. I'm sure there are more that Scott and I have come up with but I can't think of them now.
Next week we head back to Seattle. I'll continue trying to keep our family blog up to date on the family happenings. GRRRR ARGHHHH!!!!! I'm not sure that any of us were expecting that Scott would be back in the hospital again, but at least this is a planned surgery and not an emergency, which we have learned is much better!!!!! :)
Monday, August 2, 2010
Back to the Hospital
It was not in the plan to go back for a stay in the hospital, but hey when do things ever go according to plan?
On august 12th, Scott will be going in to have a ventricular peritoneal shunt (VP shunt). This is a long thin tube that starts in his brain with about 2 inches going into the brain and ends in his stomach. The start has tiny holes that absorb the cerebral fluid around the brain then has a larger pocket that holds a magnet which regulates the fluid disbursing into the stomach. This will be located in the back of his head and is sensitive to strong magnetic fields, like if he has an MRI it will have to be reset by the neurosurgeon.
We have to go in on the 11th for a stealth CT before surgery due to the need for different imaging and being able to place the tube. (We won’t have the time for any of these until its closer to the date)
The reason he has to have this placement… The fluid build up that is visible on the right side of his head is only a portion of the excess fluid. Dr. Newell said based on his CT today, there is fluid under the prosthesis bone flap as well. His brain is not absorbing cerebral fluid where the bleed was, which causes the excess. There is also still fluid from the surgery that has not absorbed. They have an option where they do a spinal tap and wrap the head to force fluid to leave the body through the spin. This is a one time procedure, but in Scott’s case they believe the fluid will just return due to the spot (I don’t know how large it is) that is not absorbing and probably never will.
The surgery will take about 1-2 hours with 1-1 ½ hours in recovery, then 2 days in observation. They said usually 1 day in ICU and 1 day in medical room. Oh how fun an over night stay on each floor. We actually visited each floor between the CT & the check up thinking we wouldn’t be back…not sure we’ll do that again…ha…ha…
Scott’s now feeling the 1 step forward, 10 steps back that we felt for so many days in the ICU. It was shocking to hear that surgery was needed again. The post surgery effects were even worse. They said to expect headaches and stomach discomfort for possibly a month as the fluid drains and the tubing finds a home in his stomach. He wont be able to lift anything more than 5lbs for 3-6 weeks and no swimming until the wounds are totally healed. These are all the things we have been doing the past few weeks to get him stronger. At least we had a nice long up hill climb before they down hill today. Let’s hope that the next few weeks all the hills will be nice and small.
On august 12th, Scott will be going in to have a ventricular peritoneal shunt (VP shunt). This is a long thin tube that starts in his brain with about 2 inches going into the brain and ends in his stomach. The start has tiny holes that absorb the cerebral fluid around the brain then has a larger pocket that holds a magnet which regulates the fluid disbursing into the stomach. This will be located in the back of his head and is sensitive to strong magnetic fields, like if he has an MRI it will have to be reset by the neurosurgeon.
We have to go in on the 11th for a stealth CT before surgery due to the need for different imaging and being able to place the tube. (We won’t have the time for any of these until its closer to the date)
The reason he has to have this placement… The fluid build up that is visible on the right side of his head is only a portion of the excess fluid. Dr. Newell said based on his CT today, there is fluid under the prosthesis bone flap as well. His brain is not absorbing cerebral fluid where the bleed was, which causes the excess. There is also still fluid from the surgery that has not absorbed. They have an option where they do a spinal tap and wrap the head to force fluid to leave the body through the spin. This is a one time procedure, but in Scott’s case they believe the fluid will just return due to the spot (I don’t know how large it is) that is not absorbing and probably never will.
The surgery will take about 1-2 hours with 1-1 ½ hours in recovery, then 2 days in observation. They said usually 1 day in ICU and 1 day in medical room. Oh how fun an over night stay on each floor. We actually visited each floor between the CT & the check up thinking we wouldn’t be back…not sure we’ll do that again…ha…ha…
Scott’s now feeling the 1 step forward, 10 steps back that we felt for so many days in the ICU. It was shocking to hear that surgery was needed again. The post surgery effects were even worse. They said to expect headaches and stomach discomfort for possibly a month as the fluid drains and the tubing finds a home in his stomach. He wont be able to lift anything more than 5lbs for 3-6 weeks and no swimming until the wounds are totally healed. These are all the things we have been doing the past few weeks to get him stronger. At least we had a nice long up hill climb before they down hill today. Let’s hope that the next few weeks all the hills will be nice and small.
Wednesday, June 23, 2010
Final thoughts from the Cruickshanks
Here are Cora, Coby and Scott's final thoughts of his hospital stay.
Cora:
1. I like meeting new people. (nurses and patients)
2. Having all the drinks I want!
3. I like helping the nurses get things.
4. Coby I like all 3 therapies, even occupational!
Coby:
1. I like seeing all the friends that come to visit my dad.
2. I really like going to therapy. (which one?) um Physical Therapy and Speech!
Scott's words of wisdom regarding Hospitals:
~Nurses can't tell time before 7am
~Hospitals have their own agenda.
~I DO NOT recommend long hospital stays! If you find yourself in one, get out ASAP!
~CATHETERS SUCK!!!
Scott had decided with his hospital stay coming to an end he is no longer wants a blog devoted to him. We invite you to follow our family blog @ http://www.scott-diane.blogspot.com/
Thank You for the Love and Constant Thoughts and Prayer that have been poured on our entire family in this extremely traumatic situation! I have had many people share with me some of the medical trials they have endured as families. Each starts with it's no where near what you're going through... NO matter what the trail is in your life, it is real and it is hard for you. Please do not think what we are going through is more than what you face! It is only different!
Much Love and Warm Wishes to each of you that read this blog, Diane
Cora:
1. I like meeting new people. (nurses and patients)
2. Having all the drinks I want!
3. I like helping the nurses get things.
4. Coby I like all 3 therapies, even occupational!
Coby:
1. I like seeing all the friends that come to visit my dad.
2. I really like going to therapy. (which one?) um Physical Therapy and Speech!
Scott's words of wisdom regarding Hospitals:
~Nurses can't tell time before 7am
~Hospitals have their own agenda.
~I DO NOT recommend long hospital stays! If you find yourself in one, get out ASAP!
~CATHETERS SUCK!!!
Scott had decided with his hospital stay coming to an end he is no longer wants a blog devoted to him. We invite you to follow our family blog @ http://www.scott-diane.blogspot.com/
Thank You for the Love and Constant Thoughts and Prayer that have been poured on our entire family in this extremely traumatic situation! I have had many people share with me some of the medical trials they have endured as families. Each starts with it's no where near what you're going through... NO matter what the trail is in your life, it is real and it is hard for you. Please do not think what we are going through is more than what you face! It is only different!
Much Love and Warm Wishes to each of you that read this blog, Diane
Tuesday, June 22, 2010
Day 73, Diane
It's almost day 74 Which is the day Scott leaves hospital living! I can't hide my joy! I am so excited that we're going home to live as a family again. The kids are so excited that we will all be home again as a family. Scott is so excited to get out of the hospital and have his family again. SO MUCH JOY!
Since Scott has learn he has an end date for being in the hospital and then going home and having it go so well he is a new man. He is now treating all the staff how as he has treated people he knew pre-injury. The easiest way to explain this is, he started interacting more with his nurses and especially his therapists. After being in the hospital so long being told what to do all the time he became very introverted where staff was concerned. Not now, he laughs and jokes with them just like with eveyone else. He has progressed so much in the last week, it is amazing.
With heading home he's moves to the in-home therapy phase. We are hoping to move through this stage quickly and start out-patient therapies so he can came to the clinic and progress faster... which will still be slower than Scott will like :)
In the real morning, not the middle of the night morning, I'll get words of wisdom from Scott, Coby and Cora to post, as for now I'll share a phrase I learned at work today.
The Wenatchee YMCA had a Centennial luncheon where Mac Bledsoe (father of Drew Bledsoe the NFL quarterback) was the key note speaker. He shared many great and inspirational things, but the one that stuck out the most was this:
"The ideas in your head, rule your world"
If you want more info on Mac Bledsoe, he truly is an inspiring man, his website is: parentingwithdignity.com
At this time in our lives, I think this will be a new family motto.
Scott will have a full recovery! It will be sooner than the 'typical' brain injury patient!
Cuz dang it he goes home, well TODAY!
Since Scott has learn he has an end date for being in the hospital and then going home and having it go so well he is a new man. He is now treating all the staff how as he has treated people he knew pre-injury. The easiest way to explain this is, he started interacting more with his nurses and especially his therapists. After being in the hospital so long being told what to do all the time he became very introverted where staff was concerned. Not now, he laughs and jokes with them just like with eveyone else. He has progressed so much in the last week, it is amazing.
With heading home he's moves to the in-home therapy phase. We are hoping to move through this stage quickly and start out-patient therapies so he can came to the clinic and progress faster... which will still be slower than Scott will like :)
In the real morning, not the middle of the night morning, I'll get words of wisdom from Scott, Coby and Cora to post, as for now I'll share a phrase I learned at work today.
The Wenatchee YMCA had a Centennial luncheon where Mac Bledsoe (father of Drew Bledsoe the NFL quarterback) was the key note speaker. He shared many great and inspirational things, but the one that stuck out the most was this:
"The ideas in your head, rule your world"
If you want more info on Mac Bledsoe, he truly is an inspiring man, his website is: parentingwithdignity.com
At this time in our lives, I think this will be a new family motto.
Scott will have a full recovery! It will be sooner than the 'typical' brain injury patient!
Cuz dang it he goes home, well TODAY!
Monday, June 21, 2010
Final Post by Betsy
This will be my final post on Scott's recovery blog. I am thankful that I started this blog for all who know and love Booger. I started this to help Diane not feel overwhelmed by trying to keep everyone up to date and I hope that it helped Booger also.
As he approaches going back home, I will pass this off to Scott and Diane to keep you all informed on his progress.
I can not begin to express how thankful I am to everyone who has read and commented on this blog. I am thankful for every single prayer and thought that came our way.
Booger, I love you and can not be happier that you are still with us. I did this because I love you and always will. Thanks for being a GREAT brother!! Can't wait to enjoy many more, happy times with you!
As he approaches going back home, I will pass this off to Scott and Diane to keep you all informed on his progress.
I can not begin to express how thankful I am to everyone who has read and commented on this blog. I am thankful for every single prayer and thought that came our way.
Booger, I love you and can not be happier that you are still with us. I did this because I love you and always will. Thanks for being a GREAT brother!! Can't wait to enjoy many more, happy times with you!
Saturday, June 19, 2010
Day 70
Today only an hour total of therapy. But it is work. He was jogging and hopping through the halls. I guess the halls out side of a rehabilitation gym are not the same as school halls. Good thing the kids didn't see that dad gets to 'run' in the halls.
Happy Fathers Day to all the papa's out there following the blog.
Seriously another holiday in the hospital? At least he'll be out for the 4th of July! Yay this year the bombs bursting in air will have a little more meaning to them for our little family... like freedom from hospitals lol
Happy Fathers Day to all the papa's out there following the blog.
Seriously another holiday in the hospital? At least he'll be out for the 4th of July! Yay this year the bombs bursting in air will have a little more meaning to them for our little family... like freedom from hospitals lol
Friday, June 18, 2010
Day 69
Scott says the home eval went well. I say it was amazing!
For anyone who's been to our house, you know it's full of stairs inside and out! I was really worried. I thought we would have to set up a make shift bedroom in our living room... NOT the case... he navigates stairs very well! No problems going up to our room, hooray. We wont have to make any changes to the house for him other than an extra hand rail on the bathtub.
It was so exciting seeing Scott chill in his chair. I can't wait in 5 days he'll be there all the time!
Our drive way & back yard were also concerns. The driveway is extremely steep and the back yard is full of hills and stone steps. He walked around enjoying the scene (slowly) without any troubles.
The rest of the time he's here the therapists will be working on helping him get stronger based on what they saw at the house today. Oh this is so exciting! It's so wonderful to see his body catching up to his mind. I still am shocked at how he has remained the same person mentally after such a traumatic brain injury. He sure may look different... hehee mountain man Scott... but his personality is not different.
For anyone who's been to our house, you know it's full of stairs inside and out! I was really worried. I thought we would have to set up a make shift bedroom in our living room... NOT the case... he navigates stairs very well! No problems going up to our room, hooray. We wont have to make any changes to the house for him other than an extra hand rail on the bathtub.
It was so exciting seeing Scott chill in his chair. I can't wait in 5 days he'll be there all the time!
Our drive way & back yard were also concerns. The driveway is extremely steep and the back yard is full of hills and stone steps. He walked around enjoying the scene (slowly) without any troubles.
The rest of the time he's here the therapists will be working on helping him get stronger based on what they saw at the house today. Oh this is so exciting! It's so wonderful to see his body catching up to his mind. I still am shocked at how he has remained the same person mentally after such a traumatic brain injury. He sure may look different... hehee mountain man Scott... but his personality is not different.
Pictures
Whoa...is this really me here? Yup, Betsy's doing a post. It's been nice since Booger's been back in Wenatchee and mom can go see him every day. Then I get the updates from her and don't have to bug Diane anymore. ;) We got to see him last Tuesday and Wednesday for a bit and it was great to see him up more. Of course, my favorite part was trying to pop wheelies in his wheelchair. Not cool, I know. But, how could I resist?
Diane asked me to post a couple pictures of Scott so people can see what he looks like. As everyone can probably assume, the dude's lost some weight. Then there's the major, obvious change goin' on....um....the mountain man look! Since he has to wear a face mask for work, he's never been able to grow a full beard and let me tell you, that guy can grow one. Just like our dad's was, it's full and thick, with a tad bit of Scottish red in it. Mix that with the head look he's sporting, just slightly different than pre-April 8th. 
Booger, keep that up and I'm gonna make you dye it white for Christmas and put on the Santa suit mom made. And watch out Diane, we've still got the Mrs. C (no pun intended) outfit for you!!!
~Betsy
Thursday, June 17, 2010
Day 68
Insurance is kicking Scott out on next Wednesday the 23rd! Yay for insurance companies.
The plan is:
~Home evaluation in the morning. This will help us determine what we need to do to get the house ready for Scott.
~All his remaining rehabs will be in focus to get him ready for being in our home.
~ At home he will be considered in-home-rehab, meaning therapists will come to the house 2-3 times a week to help him continue to progress.
~ Then he moves to out-patient rehab where he will come here 3 times a week, decreasing as he gets better.
~ And eventually life back to normal:)
The plan is:
~Home evaluation in the morning. This will help us determine what we need to do to get the house ready for Scott.
~All his remaining rehabs will be in focus to get him ready for being in our home.
~ At home he will be considered in-home-rehab, meaning therapists will come to the house 2-3 times a week to help him continue to progress.
~ Then he moves to out-patient rehab where he will come here 3 times a week, decreasing as he gets better.
~ And eventually life back to normal:)
Monday, June 14, 2010
Day 68
Wow it's not even 5pm and Scott has had a huge day! The outing to the eye doctor went very well. So the explanation I promised to get... Keratoconus is a deterioration of the cornea causing the round shape of the cornea to change to a cone shape. Light enters the eye differently causing blurry vision. 20/20 vision is only possible with gas-perm contacts for his right eye that has this, but we're not looking for 20/20 we're looking for improved to progress in rehab (for more info do a google search on keratoconus) The glasses should be here by Wednesday and if we're super lucky his medical insurance will pick up the cost, because they are really only a therapy tool in getting him better (his vision insurance is different than medical & I don't want to use the coverage for glasses that wont be used for years when I know we will be going back to gas-perms once recovery is complete).
Speaking of insurance... it make the world go round you know... I have had a few conversations lately with friends and a concern has been brought up that I think I should address. We/I am very fortunate that Scott has disability insurance and great health insurance. Both of which his Employer Cascade Auto Center has picked up/continued paying so we don't have the added expense of maintaining premiums. This along with cashing out vacation and added help from our church has made it possible for me to stay by Scott's side. We have been extremely fortunate in this not so fortunate experience.
I have not heard results from the EEG, which brings me back to the good old days of no news is good news. They haven't rushed in with seizure meds so I'm assuming we're good until they tell me other wise. Given Scott's schedule today he Rocked PT & OT today!
His schedule today: 8am Breakfast ~ 9am eye exam ~ 10-11:30 EEG appointment ~ noon lunch ~ 1-2pm PT ~ 2-3pm OT ~ Rest (happening right now)~ 5pm Dinner ~ 6-7pm ST ~ PASS OUT for the night lol
Speaking of insurance... it make the world go round you know... I have had a few conversations lately with friends and a concern has been brought up that I think I should address. We/I am very fortunate that Scott has disability insurance and great health insurance. Both of which his Employer Cascade Auto Center has picked up/continued paying so we don't have the added expense of maintaining premiums. This along with cashing out vacation and added help from our church has made it possible for me to stay by Scott's side. We have been extremely fortunate in this not so fortunate experience.
I have not heard results from the EEG, which brings me back to the good old days of no news is good news. They haven't rushed in with seizure meds so I'm assuming we're good until they tell me other wise. Given Scott's schedule today he Rocked PT & OT today!
His schedule today: 8am Breakfast ~ 9am eye exam ~ 10-11:30 EEG appointment ~ noon lunch ~ 1-2pm PT ~ 2-3pm OT ~ Rest (happening right now)~ 5pm Dinner ~ 6-7pm ST ~ PASS OUT for the night lol
Sunday, June 13, 2010
Day 67
It has been an interesting weekend. On Friday it was decided they would try to take him off the seizure medicine because the side effect has been an increased tremor in his right hand. It finally got to the point where his therapies were effected.
But why does he have to be on seizure meds? Will he always? After a patient has a brain hemorrhage they always go on seizure medicine, typical length of time 6 months. After seeing that these meds are causing side effects the question became are they really needed? Back in the day... at Swedish he was on Keppra for seizures, side effect pancreas levels raise causing extreme stomach pain that kept him from eating for days! They switched to Dilantan which side effects are now showing. (meds spelled as they sound, probably not how they're really spelled) So he has been off all seizure meds since Friday and will have an EEG of his brain in the morning to see if he has had a seizure. Let's hope and pray for a NO, we really want him to be able to stay off any kind of seizure medicine since they seem to cause the most trouble.
On a happy note, he gets to go for an eye exam in the morning. It has been decided that getting temporary glasses to help him see for rehab is better than waiting until his eyes regulate on their own. He does have some previous vision concerns that I'll try to get better clarified so it makes sense when I post lol. Typically they don't allow patients to go for eye exams of any kind, because it's not so much a vision problem as it is the eyes and brain are having to relearn how to send signals. In Scott's case he needs glasses to help his brain progress with this process.
No one has said Scott is typical through this intire ordeal :) Diane
But why does he have to be on seizure meds? Will he always? After a patient has a brain hemorrhage they always go on seizure medicine, typical length of time 6 months. After seeing that these meds are causing side effects the question became are they really needed? Back in the day... at Swedish he was on Keppra for seizures, side effect pancreas levels raise causing extreme stomach pain that kept him from eating for days! They switched to Dilantan which side effects are now showing. (meds spelled as they sound, probably not how they're really spelled) So he has been off all seizure meds since Friday and will have an EEG of his brain in the morning to see if he has had a seizure. Let's hope and pray for a NO, we really want him to be able to stay off any kind of seizure medicine since they seem to cause the most trouble.
On a happy note, he gets to go for an eye exam in the morning. It has been decided that getting temporary glasses to help him see for rehab is better than waiting until his eyes regulate on their own. He does have some previous vision concerns that I'll try to get better clarified so it makes sense when I post lol. Typically they don't allow patients to go for eye exams of any kind, because it's not so much a vision problem as it is the eyes and brain are having to relearn how to send signals. In Scott's case he needs glasses to help his brain progress with this process.
No one has said Scott is typical through this intire ordeal :) Diane
Thursday, June 10, 2010
Day 64, Diane
Sorry yesterday got away from me and I never had a chance to post. That's the hard part of sharing the computer with the kids. When I have time to type, they want to play.
The Social Worker came and talked to us. She says Scott is still progressing well. One of the things I learned is that to stay as in-patient (at the hospital) he has to still require 2 of the 3 therapies. He still requires all 3 so we will be here another week. Very possibly more! His seizure medicine is giving him side effects and so the medical staff is working on that. It's very annoying to Scott, he just wants to get through therapy and get to out-patient (home but coming in during the week). Adding the extra 1/2 hour of PT has made his endurance go down for all therapies....DUH!
A term that is used in OT & a lot in ST is scanning. I finally asked what it means. To me it was seeing everything in view, I soon realized it must be much more with how they use this term. Scanning means: seeing what's in your visual field then interpreting it so your brain understands everything it's seeing. The brain has to relearn attention to detail. Decide what language you use to describe the info the eyes give. Decide what sequence things may happen in to get this end result or the end result you want. BASICALLY scanning is EVERYTHING you do without thinking ALL DAY LONG! Wow that's rough!
Let's see... something easy we do that is a HUGE process for Scott... I want to brush my teeth. Where would the toothbrush be? Ah sink, I need to call for help to get there. Can I stand or am I too tired so I need to sit. Help comes I say I need to sit to brush my teeth. Out of bed I go into the chair & now I'm more tired. Let's see oh yes toothbrush, where would it be? Look for the bag with all the grooming supplies. Ah toothbrush in hand. Did I pass the toothpaste in there? Ah here it is. Put some on the brush and now turn the water on. Yay it's time to brush, then spit and get mouth wash to swish. Put everything away. Where that bag again? Ah yes it's all put away. Turn to whoever helped you get here to ask for help to get back in bed.
Are you as exhausted reading this as I am from writing it? Now take that experience on something so simple multiply it by your whole day and that should give you an idea of what Scott goes through. Oh wait don't forget to add the fact that majority of what you see is blurry!
... Sorry I hope this reads as informational and not the rant that is it :) because I know I was a little annoyed with not getting a yes or no to if we're on track to be here only another week? So we continue on with our goal of getting out ASAP even if it may not be as soon as we hoped.
The Social Worker came and talked to us. She says Scott is still progressing well. One of the things I learned is that to stay as in-patient (at the hospital) he has to still require 2 of the 3 therapies. He still requires all 3 so we will be here another week. Very possibly more! His seizure medicine is giving him side effects and so the medical staff is working on that. It's very annoying to Scott, he just wants to get through therapy and get to out-patient (home but coming in during the week). Adding the extra 1/2 hour of PT has made his endurance go down for all therapies....DUH!
A term that is used in OT & a lot in ST is scanning. I finally asked what it means. To me it was seeing everything in view, I soon realized it must be much more with how they use this term. Scanning means: seeing what's in your visual field then interpreting it so your brain understands everything it's seeing. The brain has to relearn attention to detail. Decide what language you use to describe the info the eyes give. Decide what sequence things may happen in to get this end result or the end result you want. BASICALLY scanning is EVERYTHING you do without thinking ALL DAY LONG! Wow that's rough!
Let's see... something easy we do that is a HUGE process for Scott... I want to brush my teeth. Where would the toothbrush be? Ah sink, I need to call for help to get there. Can I stand or am I too tired so I need to sit. Help comes I say I need to sit to brush my teeth. Out of bed I go into the chair & now I'm more tired. Let's see oh yes toothbrush, where would it be? Look for the bag with all the grooming supplies. Ah toothbrush in hand. Did I pass the toothpaste in there? Ah here it is. Put some on the brush and now turn the water on. Yay it's time to brush, then spit and get mouth wash to swish. Put everything away. Where that bag again? Ah yes it's all put away. Turn to whoever helped you get here to ask for help to get back in bed.
Are you as exhausted reading this as I am from writing it? Now take that experience on something so simple multiply it by your whole day and that should give you an idea of what Scott goes through. Oh wait don't forget to add the fact that majority of what you see is blurry!
... Sorry I hope this reads as informational and not the rant that is it :) because I know I was a little annoyed with not getting a yes or no to if we're on track to be here only another week? So we continue on with our goal of getting out ASAP even if it may not be as soon as we hoped.
Tuesday, June 8, 2010
Day 62, Diane
Today marks the 2 full months since this 1st happened and for this anniversary Scott got to walk outside for the 1st first time! He also got to get in Vader (our car) but only sit for a few minutes...how rude lol
For PT today she had a series of tests outside she had him do. Including getting into our car, stepping up & down on curbs and walking up & down hills. He did very well. After this he navigated his way back to the gym on the 4th floor. He was able to get on the treadmill and walk slowly to help get his stride longer. Today was the 1st day he did 1 & 1/2 hours of PT all at once. Scott says, "It was brutal!" Luckily it was at the end of his day so he got to sleep it off.
I missed ST today because it was Coby's family BBQ day at school and he really wanted me and Cora there. Scott say's "It was fine. There was a new person." That's all I got :) OT was just a 1/2 hour of getting ready for the day since he had a long PT. He's doing very well with getting totally ready, he only needs assistance to move around. All this helps him get closer to coming home. Another step in Scott getting better was this morning, he asked if I was going to go to work again. I laughed and said, I'm sure as soon as we're ready they'd be happy for me to help. He's says we're ready so tomorrow night I'm going to work for the 1st time in two months...wow that seems very weird. I know he can't wait for the day that he gets to go back to work for the 1st time. Funny how you never realize how much working is a part of your life until you can't do it anymore.
He's really enjoying having visitors! Tara, Besty and her family were able to come visit. Her son Henry is taking after his uncle and hates hospitals lol
For PT today she had a series of tests outside she had him do. Including getting into our car, stepping up & down on curbs and walking up & down hills. He did very well. After this he navigated his way back to the gym on the 4th floor. He was able to get on the treadmill and walk slowly to help get his stride longer. Today was the 1st day he did 1 & 1/2 hours of PT all at once. Scott says, "It was brutal!" Luckily it was at the end of his day so he got to sleep it off.
I missed ST today because it was Coby's family BBQ day at school and he really wanted me and Cora there. Scott say's "It was fine. There was a new person." That's all I got :) OT was just a 1/2 hour of getting ready for the day since he had a long PT. He's doing very well with getting totally ready, he only needs assistance to move around. All this helps him get closer to coming home. Another step in Scott getting better was this morning, he asked if I was going to go to work again. I laughed and said, I'm sure as soon as we're ready they'd be happy for me to help. He's says we're ready so tomorrow night I'm going to work for the 1st time in two months...wow that seems very weird. I know he can't wait for the day that he gets to go back to work for the 1st time. Funny how you never realize how much working is a part of your life until you can't do it anymore.
He's really enjoying having visitors! Tara, Besty and her family were able to come visit. Her son Henry is taking after his uncle and hates hospitals lol
Monday, June 7, 2010
Day 61, Diane
Scott is tube free!
This evening his J/G tube (feeding tube) was taken out of his stomach. Yay no more dealing with the tube hanging down from his stomach.
He had 1 & 1/2 hours for PT today which went really well. He's working on coordination while standing. In OT he played a game of solitaire...with real cards lol. In ST she's still working on scanning and making sure his able to process well. She had a bunch of pictures of house, yard, & garage tools and then asked questions about them. Finally something fun for Scott to do. The therapists have all been really good at finding fun ways for him to get through the boring parts of rehab. They really have been great!
It's all just one step closer to getting out of this place, even if it's just for an hour. We're hoping soon he'll be able to add an outing as part of therapy...maybe DQ for a tasty treat... it's just next door.
This evening his J/G tube (feeding tube) was taken out of his stomach. Yay no more dealing with the tube hanging down from his stomach.
He had 1 & 1/2 hours for PT today which went really well. He's working on coordination while standing. In OT he played a game of solitaire...with real cards lol. In ST she's still working on scanning and making sure his able to process well. She had a bunch of pictures of house, yard, & garage tools and then asked questions about them. Finally something fun for Scott to do. The therapists have all been really good at finding fun ways for him to get through the boring parts of rehab. They really have been great!
It's all just one step closer to getting out of this place, even if it's just for an hour. We're hoping soon he'll be able to add an outing as part of therapy...maybe DQ for a tasty treat... it's just next door.
Sunday, June 6, 2010
Day 60, Diane
Yesterday was a nice and relaxed day. He had an hour of PT & then spent a lot of time resting from the weeks work. Coby and I spent some time just chillin while he slept and Cora was at a birthday party close by. It was lots of fun... I love watching iCarly with the Coby!
I actually attended the Saturday morning class I teach at the YMCA and well I now sympathize with Scott when he's legs shake so bad he can't do any more. It's been well over a year since I've pushed myself to the I can't squat any lower because my legs just wont do it!
He's been able to rest a lot today as well with not having any therapies on Sundays. This is a good thing because he is scheduled to meet with a GI doctor about his feeding tube. It has been in over 6 weeks and now the scare tissue is built up enough to take it out. We do not know for sure if it will come out however. He is new to this hospital and the doctor will have to meet with him take a look at it and then they will access if it comes out tomorrow or another day. That's fine he's scheduled for 1 & 1/2 hours of PT tomorrow along with OT & ST. WoW tomorrow will be a big day for him. I will be sure to post the happenings of the day tomorrow night .
I actually attended the Saturday morning class I teach at the YMCA and well I now sympathize with Scott when he's legs shake so bad he can't do any more. It's been well over a year since I've pushed myself to the I can't squat any lower because my legs just wont do it!
He's been able to rest a lot today as well with not having any therapies on Sundays. This is a good thing because he is scheduled to meet with a GI doctor about his feeding tube. It has been in over 6 weeks and now the scare tissue is built up enough to take it out. We do not know for sure if it will come out however. He is new to this hospital and the doctor will have to meet with him take a look at it and then they will access if it comes out tomorrow or another day. That's fine he's scheduled for 1 & 1/2 hours of PT tomorrow along with OT & ST. WoW tomorrow will be a big day for him. I will be sure to post the happenings of the day tomorrow night .
Friday, June 4, 2010
Day 58, Diane
Yesterday was busy because Coby & Cora believed they had to come and help again in therapy. This time they were a little more distracting than helpful, but this is a good thing. Part of Scott's rehabilitation is learning how to have them in the mix. The best part was how much harder he worked today not having any distratcions. Where as yesterday the therapy gym was full of therapists with patients, today it was only Scott, Sandy and me for PT. He is now walking to the gym. It's one floor up and a bit of a walk to get there:) Once in the gym he got on a recumbent bike with the goal of 5 minutes. At 5 minutes she asked can you make a mile, OK. At a mile he felt good and he decided to go for 10 minutes! After this he had to run through a series of bridges, abs, push ups, & lunges. She then added a 6lb ball to the lunges adding a twist at the waist. WOW he worked so hard all to walk back to his room.
In ST she asked is there a project at home you'd like to do soon? He said yeah build a shed. She asked him to explain from start to finish what it would take to accomplish this task. He first made a joke but then began explaining the processes. He listed all the materials he'd have to buy, then how he'd start with the foundation, moving on the the walls, the roof, explaining each in detail of what he would have to do to build it like wall post 16 inches apart on center. The detail he was able to give her was amazing. He does have some left side neglect, meaning he sees but doesn't interpret things off to his left side peripheral vision. But so much is still right there!
We have been talking a lot about this process and how he feels like there's no progress. Yeah in his view, great I did 10 minutes on the bike today, I use to do full hour 'spin' classes after playing a hour of recquetball!
Once upon a time I taught group cycling and will again someday:) So I'll share the analogy I gave Scott. This experience has been like a 'spin' class, because as an instructor I try to describe what you would be doing if, well outside on a real bike. We started on a major roller coaster with huge ups and downs (ICU). We then moved to the rolling hills, a little up a little down but nothing to major (medical floor). Now we're on the long steady mountain climb (rehab). This part is the hardest in a class. You barley feel like you're progressing but oh so slowly as you add a little, you're legs start to tell you no we're doing somethings here. The best part is by the end you're legs are burning with the resistance you've been able to add. His road feels flat right now, but I can see the gradual incline and each day it's a little more. By the end when we're standing on the top of this crazy mountain I call "living in hospitals suck" we'll both see how far we've come and our mind, body, & souls will ache with joy over what we have accomplished!
In ST she asked is there a project at home you'd like to do soon? He said yeah build a shed. She asked him to explain from start to finish what it would take to accomplish this task. He first made a joke but then began explaining the processes. He listed all the materials he'd have to buy, then how he'd start with the foundation, moving on the the walls, the roof, explaining each in detail of what he would have to do to build it like wall post 16 inches apart on center. The detail he was able to give her was amazing. He does have some left side neglect, meaning he sees but doesn't interpret things off to his left side peripheral vision. But so much is still right there!
We have been talking a lot about this process and how he feels like there's no progress. Yeah in his view, great I did 10 minutes on the bike today, I use to do full hour 'spin' classes after playing a hour of recquetball!
Once upon a time I taught group cycling and will again someday:) So I'll share the analogy I gave Scott. This experience has been like a 'spin' class, because as an instructor I try to describe what you would be doing if, well outside on a real bike. We started on a major roller coaster with huge ups and downs (ICU). We then moved to the rolling hills, a little up a little down but nothing to major (medical floor). Now we're on the long steady mountain climb (rehab). This part is the hardest in a class. You barley feel like you're progressing but oh so slowly as you add a little, you're legs start to tell you no we're doing somethings here. The best part is by the end you're legs are burning with the resistance you've been able to add. His road feels flat right now, but I can see the gradual incline and each day it's a little more. By the end when we're standing on the top of this crazy mountain I call "living in hospitals suck" we'll both see how far we've come and our mind, body, & souls will ache with joy over what we have accomplished!
Wednesday, June 2, 2010
Day 56, Diane
Today was an interesting day. I'm not sure if it's because he slept better or what but every therapist commented on how well he has been doing. Even I could see a visible difference in PT & OT (I missed ST today). His steps are a little bigger and his feet are a little farther apart. His balance is coming slow & steady, and he has some perception fields to work on... He still has a long way to go but it is great to see visual progress.
With the 1st week here down, he's defiantly enjoying when people come to visit. He still gets tired easily; living in a rehab center is boring and that 6 &1/2 weeks in bed was killer on the body. His therapy schedules change each day, but a quick visit is always nice. He has lunch at noon and dinner at 5pm so he's always in his room then. The Medical Center is pretty open on visitors, feel free to stop in when it works in your schedule between 10am-8pm. Room 349 at the Wenatchee Valley Medical Center's, Hospital just as a reminder because well, I didn't know it was here :)
With the 1st week here down, he's defiantly enjoying when people come to visit. He still gets tired easily; living in a rehab center is boring and that 6 &1/2 weeks in bed was killer on the body. His therapy schedules change each day, but a quick visit is always nice. He has lunch at noon and dinner at 5pm so he's always in his room then. The Medical Center is pretty open on visitors, feel free to stop in when it works in your schedule between 10am-8pm. Room 349 at the Wenatchee Valley Medical Center's, Hospital just as a reminder because well, I didn't know it was here :)
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