I finally got to see Booger in his new room today! When we pulled up to the hospital, Jack asked us, 'Oh, they moved the hospital?'. We had to tell him that it's a different hospital. I think he was pretty concerned about not going back to the 'old' cafeteria.
Anyways, Scott was sleeping when we got to his room and within about 5 minutes, OT was there to work with him. It was pretty interesting to see what they had him do. First, he got up and went into the bathroom. She put numbers and letters on the wall (the bathroom wall was the only blank wall thanks to all your letters and cards to him!!!) and had him point with his left and right fingers to the letters. She said this worked on his vision and makes him scan with his eyes for things. After that he sat on the edge of the bed and she worked with his muscles by doing exercises like reaching and stretching.
It was really good seeing him, especially since I hadn't seen him in over a week. I know I haven't been posting as much but then again, I'm not there as often to see him with my own eyes. It's a great thing to have him in Wenatchee though. Back home where family and friends can come see him. Even if all you've got is 5 minutes, I know he'd appreciate your visits.
~Betsy
Saturday, May 29, 2010
Friday, May 28, 2010
Day 51, Diane
I guess I should just mention that Scott and I are working on doing the daily posts now. Basically he tells me what to report about and it goes up in my words... which usually means books, too bad for you lol!
Today was a good day, there's lots to share! I had Coby skip school so him and Cora could see what therapy is like for Scott. I have had to change plans on the kids everyday since we have been home. I feel horrible about it and even worse, I know that it will happen again... So I decided they need to understand why this happens. I'm not one to shield my kids from reality. Scott and I have always taught them that each family is different. All parents set different rules and allow/don't allow different things, so why would I shield them form the reality of Scott's situation. I need them to know that after a shower, getting cloths on and brushing teeth, he is so tired he has to sleep for awhile. I wanted them to see that where he use to go to the Y for over an hour to workout, he now can barley stretch or even walk down the hall and when he's done he is back in bed. It was a great experience for them to see and Scott loved having them here. The therapists were the best each finding ways to involve the kids, which helped so much.
Occupational Therapy: After getting ready, we worked on arm exercises. Me, Coby and Cora all stood around the bed and did them too. The kids got extra exercises to do while Scott rested. The best was Cora's push ups in her red cowgirl boots!
Physical Therapy: Scott did a lot of stretching/stabilizing exercises. It was funny how many of them I do in the Power Toning class I taught...once upon a time.... The kids got to help in a resistance exercise. Coby did great just the right amount of resistance. Cora however thought it was a 'let's see how strong I am' and used all her weight. The kids really liked PT because today was therapy dog day, so there was a pug to play with. There was also a patient earlier that had the wii fit out so the kids go to use it.
Speech Therapy was the best for me. Today was work sheets day, no fun but... Coby climbed up in the bed with Scott and learned how to cue him on finding things he may have looked over. He has neglect on the left side along with the vision issues. So he has to often be prompted to look all the way to the left of the paper. It was so fun to have Coby looking over his dad's shoulder at his 'school work'. They were so cute....crap how did I miss getting a picture of that? Oh well she left homework for Scott and made copies for the kids to work on it with him. The funniest was when Scott was doing addition problems. Coby says "dad you got that one wrong" and Scott saying "no I didn't". Then Coby looks again and says, "oh I looked at the number wrong. You're right." Scott's says, "Oh you're just trying to prove me wrong"
I have a feeling I'll hear that phrase often in the coming years when Coby's a teenager :)
Today was a good day, there's lots to share! I had Coby skip school so him and Cora could see what therapy is like for Scott. I have had to change plans on the kids everyday since we have been home. I feel horrible about it and even worse, I know that it will happen again... So I decided they need to understand why this happens. I'm not one to shield my kids from reality. Scott and I have always taught them that each family is different. All parents set different rules and allow/don't allow different things, so why would I shield them form the reality of Scott's situation. I need them to know that after a shower, getting cloths on and brushing teeth, he is so tired he has to sleep for awhile. I wanted them to see that where he use to go to the Y for over an hour to workout, he now can barley stretch or even walk down the hall and when he's done he is back in bed. It was a great experience for them to see and Scott loved having them here. The therapists were the best each finding ways to involve the kids, which helped so much.
Occupational Therapy: After getting ready, we worked on arm exercises. Me, Coby and Cora all stood around the bed and did them too. The kids got extra exercises to do while Scott rested. The best was Cora's push ups in her red cowgirl boots!
Physical Therapy: Scott did a lot of stretching/stabilizing exercises. It was funny how many of them I do in the Power Toning class I taught...once upon a time.... The kids got to help in a resistance exercise. Coby did great just the right amount of resistance. Cora however thought it was a 'let's see how strong I am' and used all her weight. The kids really liked PT because today was therapy dog day, so there was a pug to play with. There was also a patient earlier that had the wii fit out so the kids go to use it.
Speech Therapy was the best for me. Today was work sheets day, no fun but... Coby climbed up in the bed with Scott and learned how to cue him on finding things he may have looked over. He has neglect on the left side along with the vision issues. So he has to often be prompted to look all the way to the left of the paper. It was so fun to have Coby looking over his dad's shoulder at his 'school work'. They were so cute....crap how did I miss getting a picture of that? Oh well she left homework for Scott and made copies for the kids to work on it with him. The funniest was when Scott was doing addition problems. Coby says "dad you got that one wrong" and Scott saying "no I didn't". Then Coby looks again and says, "oh I looked at the number wrong. You're right." Scott's says, "Oh you're just trying to prove me wrong"
I have a feeling I'll hear that phrase often in the coming years when Coby's a teenager :)
Thursday, May 27, 2010
Day 50, Diane
Let's see what to report today...
Occupational Therapy is still working on getting ready for the day.
Physical Therapy did the full balance test today. He got around 30 points he needs 45 points to get off of fall risk status. the goal is to get to 56 points that is the number to be functioning at pre-injury level.
Speech Therapy is full of tests. Scott is starting off in a good place mentally. He is a little slow to answer but his answers are right on! Some of the things he had a hard time with were things I had a hard time with lol.
Occupational Therapy is still working on getting ready for the day.
Physical Therapy did the full balance test today. He got around 30 points he needs 45 points to get off of fall risk status. the goal is to get to 56 points that is the number to be functioning at pre-injury level.
Speech Therapy is full of tests. Scott is starting off in a good place mentally. He is a little slow to answer but his answers are right on! Some of the things he had a hard time with were things I had a hard time with lol.
Wednesday, May 26, 2010
Day 49, Diane
Scott is going to be working hard to get home fast that's for sure!
He made it through 3 hours of therapy with flying colors. It was hard work though.
Occupational Therapy: had him get ready for the day. They were assessing how well he can do normal getting ready things on his own. She said that he is starting in a really good place. He was able to do almost everything on his own and with very little queuing.
Physical Therapy: He went up to the gym to work. 1st I got past off on helping him to the bathroom any time I'm there visiting. This entailed her walking with him showing me what to do. Then Scott and I walking to the bathroom. It was not close. After this he went over to this little stepper. He was able to do 40 steps with one break. It was pretty heavy resistance, i tried it out too. Then after a small break it he did a balance test. Weight on one leg while moving the other front to back and side to side. His range of movement is small and his left side is defiantly weaker. I did not get a result from this test. As far as I'm concerned he did much better then I would expect given his injury.
Speech Therapy: Once he was back in his room he started the tests on his memory. It was a lot of questions like: How many days are in a week? name them. How many months in a year? Name them. What holiday is in this month? Then it was scenarios: What would you do first in the situation at home? Theses answers came slower but they came and they were always good answers. Of course I didn't get a answer to where he is based on this test, but he is SO MUCH better than what the doctors prepared us for. Of course doctors always give worst case, but given how much he went through I really expected some kind of major brain issue.
Once again, I truly believe all the friends & family we have following this situation that have been praying and sending uplifting thoughts our way, have made the difference in how Scott has recovered. I can never say Thank You Enough!
He made it through 3 hours of therapy with flying colors. It was hard work though.
Occupational Therapy: had him get ready for the day. They were assessing how well he can do normal getting ready things on his own. She said that he is starting in a really good place. He was able to do almost everything on his own and with very little queuing.
Physical Therapy: He went up to the gym to work. 1st I got past off on helping him to the bathroom any time I'm there visiting. This entailed her walking with him showing me what to do. Then Scott and I walking to the bathroom. It was not close. After this he went over to this little stepper. He was able to do 40 steps with one break. It was pretty heavy resistance, i tried it out too. Then after a small break it he did a balance test. Weight on one leg while moving the other front to back and side to side. His range of movement is small and his left side is defiantly weaker. I did not get a result from this test. As far as I'm concerned he did much better then I would expect given his injury.
Speech Therapy: Once he was back in his room he started the tests on his memory. It was a lot of questions like: How many days are in a week? name them. How many months in a year? Name them. What holiday is in this month? Then it was scenarios: What would you do first in the situation at home? Theses answers came slower but they came and they were always good answers. Of course I didn't get a answer to where he is based on this test, but he is SO MUCH better than what the doctors prepared us for. Of course doctors always give worst case, but given how much he went through I really expected some kind of major brain issue.
Once again, I truly believe all the friends & family we have following this situation that have been praying and sending uplifting thoughts our way, have made the difference in how Scott has recovered. I can never say Thank You Enough!
Tuesday, May 25, 2010
Day 48, Diane
Well I'm sitting here in the Wenatchee Valley Hospital. I didn't actually know that the Wenatchee Valley Medical Center was also a Hospital.
Physical Therapy (PT) was here and waiting when he came in. Once he was settled, she began working the range of motion in his legs. A little bit later he was up and walking without a walker (a person on each side helping of course) He did great! He's walking even talker today than yesterday.
Occupational Therapy (OP) worked on upper body & coordination.
Speech Therapy (SP) checked him over to see that he is eating well.
By this time he was beyond exhausted! They all had lots of questions to help set goals for his therapies. Each therapy has tests they'll run him through this week to see where is currently is and what they need to do to get him on with life. He is really going to be working while he's here!
Visitors: He is in room #349. Come in through the doors at the Emergency Room & Hospital, use elevators at the back wall up to the 3rd level. Check in desk is off to the right.
As much as he's excited to be in Wenatchee and wants to see people, therapy is kicking him in the face. We are asking that only family comes during this week, but starting Saturday, he's taking visitors any day between 10am- 7pm. The hospital asks that if he's in therapy, while we are welcome to watch, we are not welcome to interrupt. Sundays are a great day for visits, it is a day of rest even at the hospital:)
We both are extremely over joyed to be back in Wenatchee! The next step is Scott at home with me and the kids.
Thank you for all your love, support and continued prayers! I could not have done this without each of you! Knowing there were so many people who care about Scott lifted me up & kept me going through this whole experience...It's not over though. Scott has lost around 30lbs and it is mostly muscle! He has a long & slow road to complete recovery ahead.
Diane
Physical Therapy (PT) was here and waiting when he came in. Once he was settled, she began working the range of motion in his legs. A little bit later he was up and walking without a walker (a person on each side helping of course) He did great! He's walking even talker today than yesterday.
Occupational Therapy (OP) worked on upper body & coordination.
Speech Therapy (SP) checked him over to see that he is eating well.
By this time he was beyond exhausted! They all had lots of questions to help set goals for his therapies. Each therapy has tests they'll run him through this week to see where is currently is and what they need to do to get him on with life. He is really going to be working while he's here!
Visitors: He is in room #349. Come in through the doors at the Emergency Room & Hospital, use elevators at the back wall up to the 3rd level. Check in desk is off to the right.
As much as he's excited to be in Wenatchee and wants to see people, therapy is kicking him in the face. We are asking that only family comes during this week, but starting Saturday, he's taking visitors any day between 10am- 7pm. The hospital asks that if he's in therapy, while we are welcome to watch, we are not welcome to interrupt. Sundays are a great day for visits, it is a day of rest even at the hospital:)
We both are extremely over joyed to be back in Wenatchee! The next step is Scott at home with me and the kids.
Thank you for all your love, support and continued prayers! I could not have done this without each of you! Knowing there were so many people who care about Scott lifted me up & kept me going through this whole experience...It's not over though. Scott has lost around 30lbs and it is mostly muscle! He has a long & slow road to complete recovery ahead.
Diane
Bye Bye Swedish....Hello Wenatachee!!!
It's official....they are heading to Wenatchee right now! Scott will go to an acute rehab center by the Wenatchee Valley Clinic. I'm not sure of the exact location, so I'll post that later. He had to ride in a cabulance, since he does still need medical attention. Diane gets to follow in their car. The rehab center wanted him there by noon. So exciting that he'll be closer to home now for the duration of his recovery!
~Betsy
~Betsy
Monday, May 24, 2010
Day 47 Update, Diane
It is official. Wenatchee Valley Medical Center Acute Rehabilitation has accepted Scott and we are heading home in the morning!
I can't believe it's finally here! We're leaving Swedish Cherry Hill Hospital after 6 & 1/2 weeks of in-patient care. Wow no wonder his insurance was so helpful in approving an out of network rehab center in our home town... Whatever you want just leave the hospital lol...my thoughts exactly!
3 not so happy, but not so bad things:
1st - the JG tube/feeding tube stays in until June 3rd. They want it in the full 6 weeks to be sure the scare tissue has built up enough that no stomach acid can escape into his body... Ok good reason to keep it.
2nd - He has to go to Wenatchee in a cabulance. He is very unhappy about this because he remembers the ride over. Not a pleasant memory...massive head pain mixed with a bumpy ride from snow covered roads.
3rd - I will no longer be at his side 24/7. This will be a huge adjustment for both of us! But the kids will be able to see him daily instead of weekly.
So HOORAY... 'Cause he's leaving in a cabulance, don't know when he'll be back again, oh babe I don't hate to go! Leaving Swedish Hospital!
(I hope you read this with a the 'leaving on a jet plane' song in your head cuz it's in mine!
OH SO HAPPY! Diane
I can't believe it's finally here! We're leaving Swedish Cherry Hill Hospital after 6 & 1/2 weeks of in-patient care. Wow no wonder his insurance was so helpful in approving an out of network rehab center in our home town... Whatever you want just leave the hospital lol...my thoughts exactly!
3 not so happy, but not so bad things:
1st - the JG tube/feeding tube stays in until June 3rd. They want it in the full 6 weeks to be sure the scare tissue has built up enough that no stomach acid can escape into his body... Ok good reason to keep it.
2nd - He has to go to Wenatchee in a cabulance. He is very unhappy about this because he remembers the ride over. Not a pleasant memory...massive head pain mixed with a bumpy ride from snow covered roads.
3rd - I will no longer be at his side 24/7. This will be a huge adjustment for both of us! But the kids will be able to see him daily instead of weekly.
So HOORAY... 'Cause he's leaving in a cabulance, don't know when he'll be back again, oh babe I don't hate to go! Leaving Swedish Hospital!
(I hope you read this with a the 'leaving on a jet plane' song in your head cuz it's in mine!
OH SO HAPPY! Diane
Sunday, May 23, 2010
Day 46 Update, Diane
A lot of things have been happening for Scott since he's whole again.
He's eating real food! No more nasty looking tube feeding liquid. Let's see what has he had: toast, bagels, turkey, potatoes (mashed & roasted red), applesauce, pudding, pancakes...his favorite things are the milkshakes with protein, chocolate, strawberry & vanilla all are great. He has atleast 2 a day. How fun it that, wanting high calorie foods so tasty. He also drinks about 4 cranberry juice/lemon lime mixes a day. It's like a cranberry lime aid...Oh so tasty!
As long as he can maintain good calorie intake through the weekend, he'll be getting the feeding tube out tomorrow. No problem there, now that he can eat, I'm having fun getting him to eat all he can.
His PICC line will be coming out today. I don't know if we ever talked about this line. He's had it since April 9th. It's basically an IV going into the major vain that stops right before the heart. They are able to draw blood from this very easily and give all IV meds. Unlike the begining, it is not being used much now so they are taking it out. Because any thing going into the body is a source of infection and if they can take it out they do. YAY all the tubes he's had for so long are finally coming out.
Today Scott got OKed leave the room in a wheelchair! Occupational Therapy came in did some stretches with him and took him up to their Acute rehab center to look around. While we were up there Physical Therapy took him to walk down the hall and then work on posture with the parallel bars and a mirror. He is moving so much better now that his head is whole. He is still shaky and it is very hard to stand up straight but he is improving everyday.
He has not sustained much if any at all, cognitive damage from this injury. This is a huge! His biggest challenges will be his body. He does have a slight difference in strength on the left side. But it is minimal from what the doctors told us to except. He also has to recover from being in bed for 5 weeks. He has lost a lot of muscle mass and although he is stronger than I expected, he still tires easily.
With so many steps forward, I can feel the end of our hospital stay coming soon. Hopefully we'll have that info early this week. We have to wait for the doctors, insurance company and rehab centers to see his progress this weekend, get an OK to advance, and find out where that will be :)
Diane
He's eating real food! No more nasty looking tube feeding liquid. Let's see what has he had: toast, bagels, turkey, potatoes (mashed & roasted red), applesauce, pudding, pancakes...his favorite things are the milkshakes with protein, chocolate, strawberry & vanilla all are great. He has atleast 2 a day. How fun it that, wanting high calorie foods so tasty. He also drinks about 4 cranberry juice/lemon lime mixes a day. It's like a cranberry lime aid...Oh so tasty!
As long as he can maintain good calorie intake through the weekend, he'll be getting the feeding tube out tomorrow. No problem there, now that he can eat, I'm having fun getting him to eat all he can.
His PICC line will be coming out today. I don't know if we ever talked about this line. He's had it since April 9th. It's basically an IV going into the major vain that stops right before the heart. They are able to draw blood from this very easily and give all IV meds. Unlike the begining, it is not being used much now so they are taking it out. Because any thing going into the body is a source of infection and if they can take it out they do. YAY all the tubes he's had for so long are finally coming out.
Today Scott got OKed leave the room in a wheelchair! Occupational Therapy came in did some stretches with him and took him up to their Acute rehab center to look around. While we were up there Physical Therapy took him to walk down the hall and then work on posture with the parallel bars and a mirror. He is moving so much better now that his head is whole. He is still shaky and it is very hard to stand up straight but he is improving everyday.
He has not sustained much if any at all, cognitive damage from this injury. This is a huge! His biggest challenges will be his body. He does have a slight difference in strength on the left side. But it is minimal from what the doctors told us to except. He also has to recover from being in bed for 5 weeks. He has lost a lot of muscle mass and although he is stronger than I expected, he still tires easily.
With so many steps forward, I can feel the end of our hospital stay coming soon. Hopefully we'll have that info early this week. We have to wait for the doctors, insurance company and rehab centers to see his progress this weekend, get an OK to advance, and find out where that will be :)
Diane
Thursday, May 20, 2010
Day 43 Update
Scott was moved from the ICU to his old room late this morning. He had a pretty good night thanks to some pain meds. He's having some pain in his jaw because they actually had to tighten his jaw muscles. After his flap came out, those muscles became looser and looser, so they have to tighten them back up. He said that his jaw muscle (up by his temple) is painful and also his head. He's swollen on the right side of his head, which is to be expected after all they did in there.
Despite the pain he was having last night and while I was there today, he seemed to be in pretty good spirits. I think there's quite a bit of relief to know that he's put back together again.
Diane said that he was able to sign his name on the surgery permission slip...this is great! His fine motor skills are really good. He was able to drink and eat soft foods today also.
The physical therapy specialists came into his room this morning, ready to get going, and he wasn't up for it because of his pain. I was surprised they wanted to get him up and moving so fast. Obviously, they know that the sooner he does physical therapy and the more he does it, the better and faster he will heal. I'm looking forward to seeing him use his walker since I haven't seen that yet. I keep teasing him about getting a couple tennis balls for it. I really should get a horn and an orange flag too! Ha! Since he wasn't using it today, my 15 month old son, Henry, had a wonderful time with it. :)
~Betsy
Despite the pain he was having last night and while I was there today, he seemed to be in pretty good spirits. I think there's quite a bit of relief to know that he's put back together again.
Diane said that he was able to sign his name on the surgery permission slip...this is great! His fine motor skills are really good. He was able to drink and eat soft foods today also.
The physical therapy specialists came into his room this morning, ready to get going, and he wasn't up for it because of his pain. I was surprised they wanted to get him up and moving so fast. Obviously, they know that the sooner he does physical therapy and the more he does it, the better and faster he will heal. I'm looking forward to seeing him use his walker since I haven't seen that yet. I keep teasing him about getting a couple tennis balls for it. I really should get a horn and an orange flag too! Ha! Since he wasn't using it today, my 15 month old son, Henry, had a wonderful time with it. :)
~Betsy
Wednesday, May 19, 2010
New Noggin
It's official....Scott's got a new look tonight. The surgery went really well, the fit was perfect, and he's doing good. He was in a lot of pain after surgery, so they had to give him some pain meds. But, it was nice to see him come out of surgery with no ventilator in. No IV meds except straight saline. It was nice to know he was able to wake up and talk after surgery. What a difference from last time. Thank you for all your thoughts and prayers for him today. Let's hope for a relaxing night and a wonderful day tomorrow!!
~Betsy
~Betsy
Post Surgery Update
I don't have a lot of info for you but can say he's in recovery right now. The doctor told Diane on the phone that the flap was a perfect fit. He was going into CT and then recovery for about an hour. That was about 30 mins ago. Then he'll be in the ICU overnight for observation. We can't wait to see him!!!!
~Betsy
~Betsy
Flap Today!!!
Scott's in surgery right now. They took him down about 12:30 and they said it takes about 1 1/2 hours. He was nervous about having this done but I think he was in pretty good spirits beforehand. It was good to see him before surgery and we're all just sitting here waiting. I'll let everyone know more in a couple hours.
~Betsy
~Betsy
Tuesday, May 18, 2010
Day 41 Update
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
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
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
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