Thursday, December 31, 2009
Ren came to visit yesterday and she spent the night with Brock. I have slept in my own bed three nights in a row!
While I visited last night Brock did tell me that he is going to stay another week and see how far he can get before he comes home. If he goes home now then he has to do 5 days a week of outpatient rehab and that along with all the travel time just sounds exhausting where he can rest in between disciplines if he stays inpatient. If he stays inpatient then hopefully he will only have to do outpatient three days a week. He will still continue Speech, Physical Therapy, and Occupational Therapy. They have been getting him up with a walker and taking a few steps. Right now PT is the one who does most of the work but each time he gets a bit stronger. He transfered himself from one chair to another today too. That will be really helpful for when he gets to come home and be able to be alone while we work.
Ren is going to try to get new video of his progress in his therapies today. Check back later for those.
I am not sure what the New Years Eve will bring, but we are trying to come up with something fun and not get kicked out of the hospital.
xo
denah
While I visited last night Brock did tell me that he is going to stay another week and see how far he can get before he comes home. If he goes home now then he has to do 5 days a week of outpatient rehab and that along with all the travel time just sounds exhausting where he can rest in between disciplines if he stays inpatient. If he stays inpatient then hopefully he will only have to do outpatient three days a week. He will still continue Speech, Physical Therapy, and Occupational Therapy. They have been getting him up with a walker and taking a few steps. Right now PT is the one who does most of the work but each time he gets a bit stronger. He transfered himself from one chair to another today too. That will be really helpful for when he gets to come home and be able to be alone while we work.
Ren is going to try to get new video of his progress in his therapies today. Check back later for those.
I am not sure what the New Years Eve will bring, but we are trying to come up with something fun and not get kicked out of the hospital.
xo
denah
Wednesday, December 30, 2009
It was rumored . . .
that he took steps with a walker today. I haven't been to the hospital much in the past two days but will be there later today. I will get caught up on all his progress and post later tonight.
Keep praying for him, he has a long way to go and he wants to be there NOW.
denah
Keep praying for him, he has a long way to go and he wants to be there NOW.
denah
Sunday, December 27, 2009
A day off.
Brock talked the staff into no vitals until 7 and no medication pass until 9. He got to have many hours of peaceful sleep and he slept until 9 today when they finally made him wake up. Dad and Vic were here by 10. We have just been snacking, eating meals, talking, and being lazy all day. Brock hasn't even gotten dressed today. Vic has been fun to have around!
If you haven't watched the videos scroll down to see this past weeks progress.
I will keep you updated as much as possible this week but I work 12 hour days and Vance will be spending the nights Monday and Tuesday so I can sleep better on those working days. Hopefully he will sneak some video for us so we can all stay up to date on the progress. The goal is to be able to stand on his own and transfer himself from chair to chair by Thursday. If he can not do this then he has to decide wether he is going to continue to stay for inpatient rehab or just go home.
love to all,
denah
If you haven't watched the videos scroll down to see this past weeks progress.
I will keep you updated as much as possible this week but I work 12 hour days and Vance will be spending the nights Monday and Tuesday so I can sleep better on those working days. Hopefully he will sneak some video for us so we can all stay up to date on the progress. The goal is to be able to stand on his own and transfer himself from chair to chair by Thursday. If he can not do this then he has to decide wether he is going to continue to stay for inpatient rehab or just go home.
love to all,
denah
Saturday, December 26, 2009
New things learned.
Okay, I am learning much about much. First I learned how to upload videos on here so please see below. He walked the parallel bars this afternoon!
Also learned today is that we can bring a puppy up to the rehab unit to hang out with Brock! We are working on getting this arranged for tomorrow.
Last but not least we think we figured out that the nausea is being caused by his multi-vitamin. They are going to change the time of day he takes this and see if there is an improvement.
We are just taking it easy tonight and watching movies. Brock has watched all of Dexter, he is bummed he doesn't have this to entertain him any longer.
Much love to all!
Also learned today is that we can bring a puppy up to the rehab unit to hang out with Brock! We are working on getting this arranged for tomorrow.
Last but not least we think we figured out that the nausea is being caused by his multi-vitamin. They are going to change the time of day he takes this and see if there is an improvement.
We are just taking it easy tonight and watching movies. Brock has watched all of Dexter, he is bummed he doesn't have this to entertain him any longer.
Much love to all!
Back to work.
He has already had OT and PT this morning and it is only 10:00. He is showered and resting in bed now. Yesterday was nice and somewhat resting but today they are making him make up for lost time. There will not be any therapies tomorrow so they are really trying to do 3 days work in one. He stood for a few minutes today, his knees lock and he doesn't have much control but he stands a bit longer each time. His quads are just very weak.
He has been nauseated the past few days which is frustrating to him but gets better as the day goes along.
I found the old bagel shop that I used to love to visit when I taught over here. It moved right after I left the university and I never found it until this morning. It not only moved but changed its name. They have the most amazing bagels so I ran and got a couple and hopefully he will be able to eat one and that will help his belly. He needs to hurry though, I think I hear is ocupational therapist voice coming down the hall . . .
He has been nauseated the past few days which is frustrating to him but gets better as the day goes along.
I found the old bagel shop that I used to love to visit when I taught over here. It moved right after I left the university and I never found it until this morning. It not only moved but changed its name. They have the most amazing bagels so I ran and got a couple and hopefully he will be able to eat one and that will help his belly. He needs to hurry though, I think I hear is ocupational therapist voice coming down the hall . . .
Friday, December 25, 2009
Merry Christmas!
We loaded up and headed home around 9ish. The trip was tiring for Brock but he was glad to be free!
The entire Banta family (= Hofferth's and Perry's too) gathered at our house plus Chase Perry (grandson/nephew). That made us a total of 13 and two excited puppies. We have had many friends stop by to hug Brock!
There was also ham, noodles, mashed potatoes, salad, rolls, chocolate pie, strawberry pretzel dessert, and other desserts. Yum, yum. Brock ate and ate and ate, and he is still eating.
He has done really well with the wheelchair in our home but we are terrible equipment people. It will take us some time to get used to everything and how it works, but hopefully we won't need them for long.
It is going to be really really hard to make that trip back to that hospital . . .
The entire Banta family (= Hofferth's and Perry's too) gathered at our house plus Chase Perry (grandson/nephew). That made us a total of 13 and two excited puppies. We have had many friends stop by to hug Brock!
There was also ham, noodles, mashed potatoes, salad, rolls, chocolate pie, strawberry pretzel dessert, and other desserts. Yum, yum. Brock ate and ate and ate, and he is still eating.
He has done really well with the wheelchair in our home but we are terrible equipment people. It will take us some time to get used to everything and how it works, but hopefully we won't need them for long.
It is going to be really really hard to make that trip back to that hospital . . .
Thursday, December 24, 2009
Twas the night before Christmas, and all through the hospital . . .
Was one Brock Perry all nestled in his bed.
Well actually he is sitting in his chair watching Dexter.
We had a family Christmas Eve dinner in the nurses lounge tonight. Definitely different than our traditional Christmas Eve but the four of us enjoyed it. Dad and Vance just headed home to make sure Santa stops. Brock gets to go home for 8 hours tomorrow to see what he left for him.
Brock has decided to stay in rehab for at least another week. His goal is to improve as much as possible and he plans on going home on New Years Eve. That is the plan he shared with us tonight while we were eating. I think some friends are planning on visiting and he has motivation to get home then. I also think he wants the house to himself (and friends). I am not sure but I believe he was trying to tell the rest of us we need to find our own plans for that evening :O)
He stood by himself in the parallel bars today! His face is still very lopsided and his speech is still different. I see big differences in his upper body strength and he moves his legs by himself to help when he is being transfered or trying to move to the side of the bed. He still doesn't take steps and he can not stand on his own to help when moving him around but he doesn't seem to be dead weight like he did there for awhile. He still has trouble with fine motor skills, it gets frustrating quickly.
We Perry's wish all of you a Merry Christmas. Even though this has been the hardest two months of our lives, we still feel very blessed to be loved by so many. Thank you for your thoughts and prayers.
May God bless you all the days of your lives,
The Perry's
Well actually he is sitting in his chair watching Dexter.
We had a family Christmas Eve dinner in the nurses lounge tonight. Definitely different than our traditional Christmas Eve but the four of us enjoyed it. Dad and Vance just headed home to make sure Santa stops. Brock gets to go home for 8 hours tomorrow to see what he left for him.
Brock has decided to stay in rehab for at least another week. His goal is to improve as much as possible and he plans on going home on New Years Eve. That is the plan he shared with us tonight while we were eating. I think some friends are planning on visiting and he has motivation to get home then. I also think he wants the house to himself (and friends). I am not sure but I believe he was trying to tell the rest of us we need to find our own plans for that evening :O)
He stood by himself in the parallel bars today! His face is still very lopsided and his speech is still different. I see big differences in his upper body strength and he moves his legs by himself to help when he is being transfered or trying to move to the side of the bed. He still doesn't take steps and he can not stand on his own to help when moving him around but he doesn't seem to be dead weight like he did there for awhile. He still has trouble with fine motor skills, it gets frustrating quickly.
We Perry's wish all of you a Merry Christmas. Even though this has been the hardest two months of our lives, we still feel very blessed to be loved by so many. Thank you for your thoughts and prayers.
May God bless you all the days of your lives,
The Perry's
Tuesday, December 22, 2009
Family conference . . .
The family conference was at noon today. Rehab physician says another week or two or three is needed. I think he was thinking at least 2 more weeks.
Brock just wants to go home, he has already been in a hospital for 25 days.
They are doing a home assessment tomorrow to see what equipment would be needed for him to come home. The difference is he gets 4 to 5 hours of therapy a day inpatient and to go home means home health therapy maybe 3 times a week for 45 minutes. That is a big difference for someone who has a long way to go. Even though he is making progress every day he lost so much in his lower extremities
He gets to come home Christmas for 8 hours for a trial run but he has to be back at the rehab unit that night, insurance doesn't allow overnight trips.
It is his decision. Earlier he was not going to stay. Tonight he is thinking he will, he just wants to get better. It is just miserable here and home sounds so nice to him.
I think he improves each day. I transfered him from bed to chair by myself tonight, and I could not of done that even a few days ago. The rehab physician thinks he has done great but he still warns that it will be a slow process before he actually walks much.
Decisions . . .
Brock just wants to go home, he has already been in a hospital for 25 days.
They are doing a home assessment tomorrow to see what equipment would be needed for him to come home. The difference is he gets 4 to 5 hours of therapy a day inpatient and to go home means home health therapy maybe 3 times a week for 45 minutes. That is a big difference for someone who has a long way to go. Even though he is making progress every day he lost so much in his lower extremities
He gets to come home Christmas for 8 hours for a trial run but he has to be back at the rehab unit that night, insurance doesn't allow overnight trips.
It is his decision. Earlier he was not going to stay. Tonight he is thinking he will, he just wants to get better. It is just miserable here and home sounds so nice to him.
I think he improves each day. I transfered him from bed to chair by myself tonight, and I could not of done that even a few days ago. The rehab physician thinks he has done great but he still warns that it will be a slow process before he actually walks much.
Decisions . . .
Monday, December 21, 2009
Today's news.
Another busy day of therapy. Nothing new to report for the most part. He just seems a bit stronger each day but things still have a long way to go. His diet was advanced to a mechanical soft. He is eating to make up for lost meals!
We have a case review with providers to see what is recommended for continued therapy versus going home. After 12:15 tomorrow we will have a better idea of what to expect through the holiday week(s).
Carol Sue and Lee visited this evening, otherwise a quiet night. Dexter is a staple these days.
Check back tomorrow for a look into what the near future holds.
xoxoox
Denah
We have a case review with providers to see what is recommended for continued therapy versus going home. After 12:15 tomorrow we will have a better idea of what to expect through the holiday week(s).
Carol Sue and Lee visited this evening, otherwise a quiet night. Dexter is a staple these days.
Check back tomorrow for a look into what the near future holds.
xoxoox
Denah
Sunday, December 20, 2009
End of the day report
Nothing much to report. Visitors today kept him busy. Grandpa, Grandma, Mom, Dad, Vance, Kevin (Hotdog), Trent & Devin. Oh and Aunt Lesa in spirit (how's that?).
He cheats on his pureed diet and I went to get him some snacks such as hummus and goldfish and cookies. I was sent to get soft batch and I got chips ahoy, I think I have been fired.
Shower and wheelchair exercises and then a night of watching Dexter.
He can have visitors at any time this week but after 4 PM he is usually done with all of his therapy.
xo
denah
He cheats on his pureed diet and I went to get him some snacks such as hummus and goldfish and cookies. I was sent to get soft batch and I got chips ahoy, I think I have been fired.
Shower and wheelchair exercises and then a night of watching Dexter.
He can have visitors at any time this week but after 4 PM he is usually done with all of his therapy.
xo
denah
Just hanging out
It has been a slow morning at the rehab center. Vance spent the night and they slept in until about 10ish. Brock is hooked on the series Dexter so they have watched a few episodes this AM. Craig and I got here around noon. It was so nice to sleep in my own bed, first time since he was admitted the day after thanksgiving. The puppies were glad to see me too. I got a bit of Christmas shopping done yesterday too while V&B just hung out together.
The only thing he has to do today is some wheelchair exercises which he is procrastinating on. A shower is most likely in his near future also. I am trying to talk everyone into a game of Euchre, but that does not seem to be happening yet. I am not sure if Brock can hold the cards but I am sure we could come up with something creative to help him.
Tomorrow his day will start at 630ish with all the PT, OT, and speech. He will have a review committee decide on Tuesday how much longer he will be on the unit. He just wants to be home. He wants to stay until Thursday and then go home for good. I think he will have to be here longer. We will know by Wednesday at least.
He still is not emailing, texting, facebooking too much. His fingers do not work well yet with all the fine motor skills necessary to manipulate keypads. Hopefully that wont be too much longer.
If anything exciting happens I will update immediately. I work 12 hour days Monday and Tuesday and 8 on Wednesday so posts will most likely be later in the evenings.
much love
the perry's
The only thing he has to do today is some wheelchair exercises which he is procrastinating on. A shower is most likely in his near future also. I am trying to talk everyone into a game of Euchre, but that does not seem to be happening yet. I am not sure if Brock can hold the cards but I am sure we could come up with something creative to help him.
Tomorrow his day will start at 630ish with all the PT, OT, and speech. He will have a review committee decide on Tuesday how much longer he will be on the unit. He just wants to be home. He wants to stay until Thursday and then go home for good. I think he will have to be here longer. We will know by Wednesday at least.
He still is not emailing, texting, facebooking too much. His fingers do not work well yet with all the fine motor skills necessary to manipulate keypads. Hopefully that wont be too much longer.
If anything exciting happens I will update immediately. I work 12 hour days Monday and Tuesday and 8 on Wednesday so posts will most likely be later in the evenings.
much love
the perry's
Saturday, December 19, 2009
Saturday AM
PT and OT this AM with electrical stimulation too. He did well and there is slow progress.
Mom is going to try to get out of here to do some Christmas preparations. Dad is spending the afternoon and Vance is coming for evening and night.
Visitors are welcome anytime.
Brock is feeling blue.
He just wants to go home.
Mom is going to try to get out of here to do some Christmas preparations. Dad is spending the afternoon and Vance is coming for evening and night.
Visitors are welcome anytime.
Brock is feeling blue.
He just wants to go home.
Friday, December 18, 2009
Today's activities . . .
A lot of things happened today. Today is the first day free of tubes for quite some time. The hated NG tube is gone!! His picc line was removed yesterday. He takes all his medications by mouth now. He is still on pureed diet, but he is cheating! He also is not choking, even though he is cheating. See latest pictures added tonight; who yelled at him? A friend gave me a bag of cookies today and I ate one and he ate about 7. He states he needs the calories.
He seems much stronger to me. His legs have a "strange" feeling and they are making him miserable. His half smile is back full force tonight. His expressions are easier to read, but his voice is more expressive now and this helps. When only half his lips move and the other doesn't his words sound funny, even he thinks it is funny sometimes.
PT, OT, and speech continue to work with him a couple of times a day. They tried the nerve stimulation (for the swallowing) when he ate breakfast be he is so hairy that it didn't work very well. He is going to try the stimulation with his lower extremities. They marked spots on his legs that he had to trim tonight. Hopefully it will be able to work there, it is not near as gruff as that facial/neckline stubble.
Vance spent the afternoon with him, they went for a stroll through the hospital after his therapies. Hannah and Kyle visited late afternoon. Dad and Mom spent the evening and mom staying the night.
He will have therapies all day tomorrow but Sunday's on rehab are rest days. He is trying to come up with something fun to do while stuck here, any ideas for him?
much love,
denah
He seems much stronger to me. His legs have a "strange" feeling and they are making him miserable. His half smile is back full force tonight. His expressions are easier to read, but his voice is more expressive now and this helps. When only half his lips move and the other doesn't his words sound funny, even he thinks it is funny sometimes.
PT, OT, and speech continue to work with him a couple of times a day. They tried the nerve stimulation (for the swallowing) when he ate breakfast be he is so hairy that it didn't work very well. He is going to try the stimulation with his lower extremities. They marked spots on his legs that he had to trim tonight. Hopefully it will be able to work there, it is not near as gruff as that facial/neckline stubble.
Vance spent the afternoon with him, they went for a stroll through the hospital after his therapies. Hannah and Kyle visited late afternoon. Dad and Mom spent the evening and mom staying the night.
He will have therapies all day tomorrow but Sunday's on rehab are rest days. He is trying to come up with something fun to do while stuck here, any ideas for him?
much love,
denah
Thursday, December 17, 2009
12/17/2009
Today was a busy successful day. I left for work at 7 and dad was on duty for the morning. Grandpa and Grandma Banta were on duty this afternoon/evening. He had visits from Cathy and Diana tonight too. I got back from work at 8 and he was up in the chair and watching Hulu.
Swallowing study this morning still shows a lot of dysfunction and speech worked with him for techniques while eating. He can still have a pureed diet but he has to take small bites, turn head to right and down to chest, swallow, follow with liquids, and dry swallow a couple of times and then cough before the next small bite. Eating is a challenge and time consuming but a welcome event. He ate three meals today! He still has tube feedings at night but he is so hoping to get rid of "the tube" soon. He hates it.
He also worked with PT and OT in the AM and again in the afternoon. They let him have a break in between and he gets to rest. PT has him exercising his unused muscles and trying to just stand. he can not do this on his own and only for less than a minute with help for now. OT is working on upper body exercises and learning to maneuver from lying to sitting which he can not do on his own, but he is learning to help those helping him. OT also works with showering and shaving and teeth brushing, you know those things we take for granted that we can do every day without having to will our muscle/limb/digit to work enough to complete the task.
He does not like his rehab bed. He has had the top of the line beds on the 5th floor and at IU but this bed just isn't near as nice/comfy. I think they do that to remind those in rehab that they are there to be up rehab-ing and not lying in bed napping? Just a theory of mine.
He wants to be home by Christmas but I do not think they are thinking that will happen. We just have to wait to see when those myelin sheaths start repairing and things start communicating. I see some communication going on. I think his arms are moving better (but not the fingers so much). His right side of his face every once in awhile has a bit of expression to it, like a turned up smile when he is laughing. I wanted to put a picture of this on here but he is being picture unfriendly the past couple of days, someone should yell at him about this.
Well it has been a long busy day, we are going to get into our PJs and watch a new series he found on hulu: Dexter.
Will let you know how things go tomorrow.
love,
denah
Swallowing study this morning still shows a lot of dysfunction and speech worked with him for techniques while eating. He can still have a pureed diet but he has to take small bites, turn head to right and down to chest, swallow, follow with liquids, and dry swallow a couple of times and then cough before the next small bite. Eating is a challenge and time consuming but a welcome event. He ate three meals today! He still has tube feedings at night but he is so hoping to get rid of "the tube" soon. He hates it.
He also worked with PT and OT in the AM and again in the afternoon. They let him have a break in between and he gets to rest. PT has him exercising his unused muscles and trying to just stand. he can not do this on his own and only for less than a minute with help for now. OT is working on upper body exercises and learning to maneuver from lying to sitting which he can not do on his own, but he is learning to help those helping him. OT also works with showering and shaving and teeth brushing, you know those things we take for granted that we can do every day without having to will our muscle/limb/digit to work enough to complete the task.
He does not like his rehab bed. He has had the top of the line beds on the 5th floor and at IU but this bed just isn't near as nice/comfy. I think they do that to remind those in rehab that they are there to be up rehab-ing and not lying in bed napping? Just a theory of mine.
He wants to be home by Christmas but I do not think they are thinking that will happen. We just have to wait to see when those myelin sheaths start repairing and things start communicating. I see some communication going on. I think his arms are moving better (but not the fingers so much). His right side of his face every once in awhile has a bit of expression to it, like a turned up smile when he is laughing. I wanted to put a picture of this on here but he is being picture unfriendly the past couple of days, someone should yell at him about this.
Well it has been a long busy day, we are going to get into our PJs and watch a new series he found on hulu: Dexter.
Will let you know how things go tomorrow.
love,
denah
Wednesday, December 16, 2009
12/16/09
Again, a day started off with nausea. He just is not tolerating food by mouth. He has lost about 20 pounds.
He is resting now. He participated in PT but OT and the swallowing study were canceled this AM due to the nausea.
He has another round of PT and OT and speech yet this afternoon.
He does seem stronger when they are transferring him and it only takes two now, sometimes one if it is someone who knows what they are doing. Of course he doesn't weigh much at all so that makes it a bit easier.
We have an appointment with the case manager today to talk about the length of his stay.
Check back later for updates
denah
He is resting now. He participated in PT but OT and the swallowing study were canceled this AM due to the nausea.
He has another round of PT and OT and speech yet this afternoon.
He does seem stronger when they are transferring him and it only takes two now, sometimes one if it is someone who knows what they are doing. Of course he doesn't weigh much at all so that makes it a bit easier.
We have an appointment with the case manager today to talk about the length of his stay.
Check back later for updates
denah
Tuesday, December 15, 2009
12/15/09 EOD report
Well we had a rough start to the day, but as things went along it improved. He completed PT, OT, and speech therapy today. He was just a little grumpy at times. Frustrated might be a good word for today. I know he is very tired of not being able to do anything for himself, let along not walking. He has been in a bed since the day after thanksgiving.
I left for awhile this afternoon. I got to see my puppies! Vance was home too, his last final was this afternoon. He will be able to help and spend time at the hospital more now that we are closer to home and his semester is over.
Brock took a shower tonight. They have the most wonderful shower chair made out of PVC. You would of thought after all these years of working with PVC pipe someone in my family would of thought of this wonderful tool, but then again we haven't ever had a need for such a thing before.
When I got home I was so overwhelmed by the sympathy cards we are still getting daily, now along with all the cards being sent to Brock. The out pouring of love and compassion is welcomed. It is so wonderful to feel so loved in such times.
The rehab doctor was concerned with Brock's eyes (they do not completely close), especially while sleeping so he now has a new eye mask to wear at night. I might try to sneak a picture of this when he isn't looking, oh wait he can't see me when he has it on. Check back tomorrow for a snapshot unless I get caught.
He isn't tolerating much foods, he is on a pureed diet now and he doesn't think much of it. He still feels bloated from the tube feedings but they have put him back on them for 12 hours at evening/night after he has completed all his therapies. He is free from the lines during the day so he can participate without hinderance from them. He really just will be so glad to be rid of this tube!
He has been approved for rehab for 8 days, but the rehab doctor thinks he will have to stay longer and doesn't feel like it will be a problem getting insurance approval. Brock was disappointed, he so wanted to be out of a hospital by Christmas. We will just have to have Christmas here. We do not even have a tree at home, so that might make it easier . . . they have a tree here!!
I will keep you posted how tomorrow goes.
love,
denah
I left for awhile this afternoon. I got to see my puppies! Vance was home too, his last final was this afternoon. He will be able to help and spend time at the hospital more now that we are closer to home and his semester is over.
Brock took a shower tonight. They have the most wonderful shower chair made out of PVC. You would of thought after all these years of working with PVC pipe someone in my family would of thought of this wonderful tool, but then again we haven't ever had a need for such a thing before.
When I got home I was so overwhelmed by the sympathy cards we are still getting daily, now along with all the cards being sent to Brock. The out pouring of love and compassion is welcomed. It is so wonderful to feel so loved in such times.
The rehab doctor was concerned with Brock's eyes (they do not completely close), especially while sleeping so he now has a new eye mask to wear at night. I might try to sneak a picture of this when he isn't looking, oh wait he can't see me when he has it on. Check back tomorrow for a snapshot unless I get caught.
He isn't tolerating much foods, he is on a pureed diet now and he doesn't think much of it. He still feels bloated from the tube feedings but they have put him back on them for 12 hours at evening/night after he has completed all his therapies. He is free from the lines during the day so he can participate without hinderance from them. He really just will be so glad to be rid of this tube!
He has been approved for rehab for 8 days, but the rehab doctor thinks he will have to stay longer and doesn't feel like it will be a problem getting insurance approval. Brock was disappointed, he so wanted to be out of a hospital by Christmas. We will just have to have Christmas here. We do not even have a tree at home, so that might make it easier . . . they have a tree here!!
I will keep you posted how tomorrow goes.
love,
denah
IRC so far
Well so far it has been a slow start. He is not feeling well and is a little down in the dumps.
He went for a new swallowing test but he could not complete it due to vomiting. He is now resting.
He has done OT and speech this am. He was too nauseated for PT. They promised not to throw us out yet but he has to tolerated three hours of therapy a day or they will have to discharge him.
I am going home for the first time in over two weeks for the afternoon. I am excited to see my puppies.
He isn't advancing with his diet as they hoped. Keep praying his swallowing improves enough to eat and pray for some encouragement and endurance.
More later,
denah
He went for a new swallowing test but he could not complete it due to vomiting. He is now resting.
He has done OT and speech this am. He was too nauseated for PT. They promised not to throw us out yet but he has to tolerated three hours of therapy a day or they will have to discharge him.
I am going home for the first time in over two weeks for the afternoon. I am excited to see my puppies.
He isn't advancing with his diet as they hoped. Keep praying his swallowing improves enough to eat and pray for some encouragement and endurance.
More later,
denah
Monday, December 14, 2009
Back at MHHCC . . .
We are back and he is in IRC (inpatient rehab unit) room 1340.
He is a grouch.
I am tired.
He has to tolerate 3 hours of rehab to be able to stay here. He has enjoyed his full liquids today but he was nauseated on the ride home and didn't eat anything after we got here. His continuous food supply is clamped at the time. We will see what tomorrow brings.
Keep him in your prayers. He needs endurance to get back on his feet and not get kicked out of rehab.
He will have a day of assessments and a daily plan will be initiated for him with goals. I am anxious to see the progress.
It may be later in the day before I post tomorrow but we will keep you updated.
much love
denah
He is a grouch.
I am tired.
He has to tolerate 3 hours of rehab to be able to stay here. He has enjoyed his full liquids today but he was nauseated on the ride home and didn't eat anything after we got here. His continuous food supply is clamped at the time. We will see what tomorrow brings.
Keep him in your prayers. He needs endurance to get back on his feet and not get kicked out of rehab.
He will have a day of assessments and a daily plan will be initiated for him with goals. I am anxious to see the progress.
It may be later in the day before I post tomorrow but we will keep you updated.
much love
denah
Look out MHHCC, here we come.
He will be transfered to MHHCC rehab unit tonight!!
He has done well with his full liquid diet except for broth. The saltiness or something was very irritating and caused a lot of choking, but his cough is now strong enough to keep everything clear. We just have to try things and be careful.
We have no idea how long to expect to be in rehab but it is a big step towards going home to Monroe City and eventually back to Chicago.
:O)
He has done well with his full liquid diet except for broth. The saltiness or something was very irritating and caused a lot of choking, but his cough is now strong enough to keep everything clear. We just have to try things and be careful.
We have no idea how long to expect to be in rehab but it is a big step towards going home to Monroe City and eventually back to Chicago.
:O)
12/14/2009 update
Neurologist was in and agreeable to sending him to MHHCC. Things are in progress, contacting MHHCC people to discuss possibilities, maybe even moving later today but I am betting it will be more like tomorrow before we get it all arranged. Speech feels he is strong enough without worry of aspiration for us to transport him by vehicle and do not need an ambulance. I think Brock is secretly wanting to just get in the vehicle and drive home, but he just can not do that yet. A week or two of rehab and a few weeks of therapy at home and I am betting he will be strong enough to make it back to seminary by next semester. No one can tell us a timeline, but his improvement in just the past 48 hours is encouraging.
12/14/2009
Speech evaluation today was exciting. Much improvement over the weekend. Ahh and ehh exercises do make a difference :O)
He now has full liquid diet, which means anything that will become a liquid at room temperature. The most exciting thing for him with this is jello, broth, and COFFEE!
We are waiting for the neurologist team to visit to make some decisions. His med student today stated they are ready to move him to a medical floor, but probably would not be accepted to a rehab because of the feeding tube. We are pushing to return to MHHCC even if it is for a medical floor. Hopefully they will let us rehab there a little quicker, even if he has an NG tube? Otherwise he would have to have a feeding tube placed in his belly before any rehab will take him. We do not want to do that so we will wait for the swallowing to keep improving. Doing this at MHHCC will just make it easier on the parentals and our work situations. (and yes, I miss my dogs).
I will let you know what the neuro team decides soon.
dp
He now has full liquid diet, which means anything that will become a liquid at room temperature. The most exciting thing for him with this is jello, broth, and COFFEE!
We are waiting for the neurologist team to visit to make some decisions. His med student today stated they are ready to move him to a medical floor, but probably would not be accepted to a rehab because of the feeding tube. We are pushing to return to MHHCC even if it is for a medical floor. Hopefully they will let us rehab there a little quicker, even if he has an NG tube? Otherwise he would have to have a feeding tube placed in his belly before any rehab will take him. We do not want to do that so we will wait for the swallowing to keep improving. Doing this at MHHCC will just make it easier on the parentals and our work situations. (and yes, I miss my dogs).
I will let you know what the neuro team decides soon.
dp
Sunday, December 13, 2009
12/13/2009
I apologize for not updating yesterday. We just seemed to be busy with a lot of things. OT worked him really hard and he has been doing his speech therapy exercises. It is comical to listen to. Ahh Ehh echoes routinely in this little room along with a lot of swallowing exercises.
Right now he is just slowly gaining strength. His voice sounds more like himself at times, but once he fatigues then we are back to the gruff low tone. Still no facial expressions to speak of. He tries ice chips and popsicles but still gags and coughs a lot with these. Aspiration is a huge fear and we work hard to avoid this. The feeding tube has helped his strength but he is still hungry. We are not allowed to discuss food, let alone bring something to the room to eat. We just say we are going to get the mail and disappear for a few minutes to grab a bite. He never asks why we do not have any mail when we return :O) Many of his Ashram housemates and Anderson friends have visited. Last night I stole away for a few hours with some dear friends. When I returned I excitedly told him about the fabulous meal they had treated me to, forgetting the rule of no food talk. His face just fell and I felt bad. Starving is no fun.
The weekends in a hospital setting slow down to almost a halt when it comes to decision making and diagnostics. Tomorrow will hold a day of decisions and hopefully we move to a regular medical floor and once speech says he is strong enough to remove the NG tube we will be heading back to MHHCC for rehab. We are even going to try to see if they will take him back even if he still has the NG tube. IU has been wonderful to us but it is so difficult for me and Craig to be away from home. We have been through so much lately without our community and friends. Never have we realized how much these people mean to us. Our time in Florida was such a sad time but doing it alone made it harder. We were so happy to be back home and then all of a sudden we were out of our community again. We just want to be close to our home, friends, and work. For 25 years I have begged Craig to let me be a housewife/mother. Now all I want is to go to work and feel normal again, to have a routine and complain because our children are too busy to spend time with us. The real truth might also be: I MISS MY DOGS.
Brock is staying brave and trying to not be discouraged. He is a very intelligent young man and understands this syndrome and its process better than most. He has amazingly stayed positive even though within a weeks time he lost the ability to walk or the ability to do daily activities of care. He has to depend on someone for everything. I know that this is a hard thing to take but he has done it without once complaining. He has the most amazing friends that have came by to offer encouragement and much love. They too are amazing young men and women. I have felt blessed by all of them.
If there is any news yet today I will post but I do not expect any. As soon as anything develops tomorrow we will keep things posted. I expect some kind of news and timeline for the week will be developed.
love,
denah
Right now he is just slowly gaining strength. His voice sounds more like himself at times, but once he fatigues then we are back to the gruff low tone. Still no facial expressions to speak of. He tries ice chips and popsicles but still gags and coughs a lot with these. Aspiration is a huge fear and we work hard to avoid this. The feeding tube has helped his strength but he is still hungry. We are not allowed to discuss food, let alone bring something to the room to eat. We just say we are going to get the mail and disappear for a few minutes to grab a bite. He never asks why we do not have any mail when we return :O) Many of his Ashram housemates and Anderson friends have visited. Last night I stole away for a few hours with some dear friends. When I returned I excitedly told him about the fabulous meal they had treated me to, forgetting the rule of no food talk. His face just fell and I felt bad. Starving is no fun.
The weekends in a hospital setting slow down to almost a halt when it comes to decision making and diagnostics. Tomorrow will hold a day of decisions and hopefully we move to a regular medical floor and once speech says he is strong enough to remove the NG tube we will be heading back to MHHCC for rehab. We are even going to try to see if they will take him back even if he still has the NG tube. IU has been wonderful to us but it is so difficult for me and Craig to be away from home. We have been through so much lately without our community and friends. Never have we realized how much these people mean to us. Our time in Florida was such a sad time but doing it alone made it harder. We were so happy to be back home and then all of a sudden we were out of our community again. We just want to be close to our home, friends, and work. For 25 years I have begged Craig to let me be a housewife/mother. Now all I want is to go to work and feel normal again, to have a routine and complain because our children are too busy to spend time with us. The real truth might also be: I MISS MY DOGS.
Brock is staying brave and trying to not be discouraged. He is a very intelligent young man and understands this syndrome and its process better than most. He has amazingly stayed positive even though within a weeks time he lost the ability to walk or the ability to do daily activities of care. He has to depend on someone for everything. I know that this is a hard thing to take but he has done it without once complaining. He has the most amazing friends that have came by to offer encouragement and much love. They too are amazing young men and women. I have felt blessed by all of them.
If there is any news yet today I will post but I do not expect any. As soon as anything develops tomorrow we will keep things posted. I expect some kind of news and timeline for the week will be developed.
love,
denah
Friday, December 11, 2009
12/11/09
Even though he has improved the past day or so he still failed the swallowing test. He has exercises to do and will repeat test on Monday. He can not go to a rehab unit until the feeding tube is gone.
He stood for PT today for maybe even a minute. Not on his own of course, but they couldn't even get him up for a second two days ago. Improvements are rewarding but exhausting all in one.
He has been nauseated today some. He is still feeling really tired. He was bummed about the swallowing test. I guess there are just bad days and good days. He is due for a good day tomorrow
He is expecting guests, I hope they cheer him up.
He stood for PT today for maybe even a minute. Not on his own of course, but they couldn't even get him up for a second two days ago. Improvements are rewarding but exhausting all in one.
He has been nauseated today some. He is still feeling really tired. He was bummed about the swallowing test. I guess there are just bad days and good days. He is due for a good day tomorrow
He is expecting guests, I hope they cheer him up.
12/11/2009
This morning he had a speech evaluation that showed a lot of improvement, enough that he goes for a swallowing study at 12:30 today. If that is okay they will let him start having liquids, ice chips, popsicles, etc. If he tolerates those we will advance to some actual food. If that all goes well then the NG tube will come out and the suction will be discontinued. If he tolerates all this then we will be able to load him into a car and head to MHHCC rehab unit for a week or so. This is exciting news. Anxiously awaiting the swallowing study and its results.
He is sleeping this AM. Nurse from hell last night kept turning on the overhead lights and waking him every hour. He is a bit grouchy after the whole experience. I am letting him rest until the swallowing study but once he is back to the room there is work to be done. (bath, PT & OT exercises, etc)
He is sleeping this AM. Nurse from hell last night kept turning on the overhead lights and waking him every hour. He is a bit grouchy after the whole experience. I am letting him rest until the swallowing study but once he is back to the room there is work to be done. (bath, PT & OT exercises, etc)
Thursday, December 10, 2009
12/10/09 end of day report
There wasn't a lot accomplished today except rest & OT. He will have a speech evaluation in the morning and we are hoping that there are improvements. It is sometimes hard to tell when I sit here with him all day every day but Sally visited tonight and she states that she can see improvements. :O)
12/10/09 mid day report . . .
Not much action today, Brock is tired. The neurologist was in and as soon as Brock can pass the speech therapist's okay for a swallowing study, and then as long as that shows he can swallow enough to remove the NG tube, we will be heading south. He will do his rehab at Memorial Hospital and Healthcare Center. It is too hard for the parental units to be so far away from our responsibilities. We have missed so much work with JD's death and then this experience with Guillian-Barre that we just have to return home for the rehabilitation.
The neurologist's best guess is hopefully swallowing on his own within a week and then two weeks of rehab before released for home rehab. He could be a couple of months to many months from that point. No one knows for sure. This syndrome does its own thing and there is no way of knowing when the myelin sheaths will repair and nerves start talking to one another to make things move. The good news is they will start talking again.
I think we will just take it a little easy today and rest and read. I will post at the end of the day.
denah
The neurologist's best guess is hopefully swallowing on his own within a week and then two weeks of rehab before released for home rehab. He could be a couple of months to many months from that point. No one knows for sure. This syndrome does its own thing and there is no way of knowing when the myelin sheaths will repair and nerves start talking to one another to make things move. The good news is they will start talking again.
I think we will just take it a little easy today and rest and read. I will post at the end of the day.
denah
Wednesday, December 9, 2009
Today's activities . . .
For the most part it is wait and see from the neurologist's point of view. He feels he has hit the weakest point and now will very slowly start to regain what he has lost.
He took a bath this afternoon and got up in the chair. The whole process took about two hours but he got it done. It is amazing how long it takes to brush your teeth when your fingers and arms aren't working well, or your feet won't move with you to keep you from toppling over while your upper body is moving to wash your face.
His fingers are still frustrating when it comes to typing on his lap top or phone. He tires of attempting to communicate this way quickly. Something once taken for granted is now a fatiguing chore. The good news it will return to be something he takes for granted one day.
His neck seems to be a bit stronger today. Still no smile. Still numb tongue and lips. Still no swallowing of food, liquids, or even much spit (still very thankful for the suction wand). Neuro said that the facial movements will most likely be the first thing we notice returning. I am looking forward to the facial expressions. His voice is low and gruff because it takes effort to talk and breath, then he has no facial expressions except some funny eye movements that make me think he is rolling his eyes at me. I get confused what he is trying to express. Well except for the time he did manage to raise this one finger when I said something about his hair.
We had a good night again last night and hope tonight brings the same. The rest and nutrition seem to be helping. One day at a time here at the IU Medical Center . . .
He took a bath this afternoon and got up in the chair. The whole process took about two hours but he got it done. It is amazing how long it takes to brush your teeth when your fingers and arms aren't working well, or your feet won't move with you to keep you from toppling over while your upper body is moving to wash your face.
His fingers are still frustrating when it comes to typing on his lap top or phone. He tires of attempting to communicate this way quickly. Something once taken for granted is now a fatiguing chore. The good news it will return to be something he takes for granted one day.
His neck seems to be a bit stronger today. Still no smile. Still numb tongue and lips. Still no swallowing of food, liquids, or even much spit (still very thankful for the suction wand). Neuro said that the facial movements will most likely be the first thing we notice returning. I am looking forward to the facial expressions. His voice is low and gruff because it takes effort to talk and breath, then he has no facial expressions except some funny eye movements that make me think he is rolling his eyes at me. I get confused what he is trying to express. Well except for the time he did manage to raise this one finger when I said something about his hair.
We had a good night again last night and hope tonight brings the same. The rest and nutrition seem to be helping. One day at a time here at the IU Medical Center . . .
Tuesday, December 8, 2009
End of the day report
Well, the NG tube is in place and working. Secretions are increased but trying a medication to dry those. He is sitting at the side of his bed on his computer, nice improvement. Still unable to move his legs on his own, still unable to swallow, still weak upper arms, but his stamina seems to be stronger tonight. Still grateful for the suction wand and the angels named Sandy and Tricia today. What a difference one or two very kind people can make in someone's life. It is a long road ahead, but these two seemed to get things going in the right direction today. Took a picture and I will see if I can get it uploaded . . .
NG Tube
After heavy sedation, the NG is in place. He is back in the room resting and doesn't even realize he is getting food to his belly yet. He is not gagging, spitting, choking, or fighting the tube so this is a good sign. Lets hope the nutrients give him strength quickly so we can get on the road out of here.
denah
denah
New day . . .
Dear loved ones,
Well, we hope today will be a good good [day]. Once the horrid NG tube was removed he settled down into the old Brock for the most part. We had one of our better nights. We both slept!!
Today we have a god-send. Her name is Sandy. She is Brock's nurse and she has a heart of a mom. She also happens to be the bff of one of the speech therapists; Tricia. Tricia has been here to evaluate Brock. The order never made it to the computer so we are told. Sandy just called her bff and made it happen.
Tricia absolutely will not let there be anything by mouth (NPO). So . . . for nutrients his best option is his functioning gut. This unfortunately means the NG tube. After MUCH persuasion Brock has agreed to try again. The good news is that it will be done under radiology where the 4 hour process from last night becomes a 5-10 minute procedure today and they promised sedation. So, one might ask why it was not done this way to begin with . . . well the bedside procedure is a lot less expensive than the radiology procedure and insurance makes you fail the cheaper procedure before it will pay for the more expensive procedure. Brock adamantly assured the 6 third year residents and his main Neurologist that he failed. His sense of humor remains and the room filled with laughter.
Physical therapy has been here and he has done his work. He is resting now and waiting to hear when he will go for the NG tube procedure. I will let you know how that goes.
much love,
denah
Well, we hope today will be a good good [day]. Once the horrid NG tube was removed he settled down into the old Brock for the most part. We had one of our better nights. We both slept!!
Today we have a god-send. Her name is Sandy. She is Brock's nurse and she has a heart of a mom. She also happens to be the bff of one of the speech therapists; Tricia. Tricia has been here to evaluate Brock. The order never made it to the computer so we are told. Sandy just called her bff and made it happen.
Tricia absolutely will not let there be anything by mouth (NPO). So . . . for nutrients his best option is his functioning gut. This unfortunately means the NG tube. After MUCH persuasion Brock has agreed to try again. The good news is that it will be done under radiology where the 4 hour process from last night becomes a 5-10 minute procedure today and they promised sedation. So, one might ask why it was not done this way to begin with . . . well the bedside procedure is a lot less expensive than the radiology procedure and insurance makes you fail the cheaper procedure before it will pay for the more expensive procedure. Brock adamantly assured the 6 third year residents and his main Neurologist that he failed. His sense of humor remains and the room filled with laughter.
Physical therapy has been here and he has done his work. He is resting now and waiting to hear when he will go for the NG tube procedure. I will let you know how that goes.
much love,
denah
Monday, December 7, 2009
Good bye tube!
Tube is gone and we are VERY happy about it... mostly Brock is the most happy and he is feeling MUCH better. That's all...
one day at a time...
Sara writing here...sitting in the room with Brother Brock. I will do my best to update all of you loved ones.
Brock has not been able to eat since Thursday because he is having a hard time swallowing. He got a tube put up his nose today that goes down to his small intestines so that they can feed him through it. He is relieved that he will be able to have some substance because he is quite weak from not eating however, putting the tube in was uncomfortable and now it is even a little painful. His gag-reflex is mad that there is a tube down his throat so it feels like he is choking a lot (not all that pleasant for him). But he has a new device (that Denah calls his magic stick) one of those suckie things that they give you at the dentist to help all the saliva build up from the difficulty swallowing. He uses this a lot and it relieves some of the discomfort.
We saw the neurologist today and he confirmed that is it for sure Guillain Barre syndrome (they were not 100% sure before). Some times with GB people's lungs become so weak that they have to be put on a ventilator. Brock's case does not look like it will progress to that point and for that we are very thankful. The Dr. said that because he is likely not going to need the ventilator he is more of a medium case of GB. He said if there were 3 forms (mild, medium and sever) Brock would fit into the medium category. Because he is in the more medium catagory of GB the doctor is guessing it will be about two weeks standing until he can stand again. The best news is the Doctor is confident that he will recover 100% from GB although it could be a long road ahead. He is getting a steady does of IVIG (plasma that maybe you could have donated when you were poor :) and that treatment should speed up the recovery time.
Brock is really hard core let me tell you that. He has been a real trooper through it all but it is getting discouraging that he has to lay in bed all day unable to do anything. Any word of of encouragement, support and love would be good for him and the address is below if anyone wants to send anything.
Visitors are good for Brock however; it is best if you contact Denah before you come to check up on Brocks state. Some days are rough and visitors could be difficult but when he is doing well visitors are encouraged, just talk to Denah!
Feel free to check this blog as often as you like and we will try to keep you posted as best we can!
Brock Perry rm. 6268
550 N. University Blv.
Indianapolis, IN 46202
Brock has not been able to eat since Thursday because he is having a hard time swallowing. He got a tube put up his nose today that goes down to his small intestines so that they can feed him through it. He is relieved that he will be able to have some substance because he is quite weak from not eating however, putting the tube in was uncomfortable and now it is even a little painful. His gag-reflex is mad that there is a tube down his throat so it feels like he is choking a lot (not all that pleasant for him). But he has a new device (that Denah calls his magic stick) one of those suckie things that they give you at the dentist to help all the saliva build up from the difficulty swallowing. He uses this a lot and it relieves some of the discomfort.
We saw the neurologist today and he confirmed that is it for sure Guillain Barre syndrome (they were not 100% sure before). Some times with GB people's lungs become so weak that they have to be put on a ventilator. Brock's case does not look like it will progress to that point and for that we are very thankful. The Dr. said that because he is likely not going to need the ventilator he is more of a medium case of GB. He said if there were 3 forms (mild, medium and sever) Brock would fit into the medium category. Because he is in the more medium catagory of GB the doctor is guessing it will be about two weeks standing until he can stand again. The best news is the Doctor is confident that he will recover 100% from GB although it could be a long road ahead. He is getting a steady does of IVIG (plasma that maybe you could have donated when you were poor :) and that treatment should speed up the recovery time.
Brock is really hard core let me tell you that. He has been a real trooper through it all but it is getting discouraging that he has to lay in bed all day unable to do anything. Any word of of encouragement, support and love would be good for him and the address is below if anyone wants to send anything.
Visitors are good for Brock however; it is best if you contact Denah before you come to check up on Brocks state. Some days are rough and visitors could be difficult but when he is doing well visitors are encouraged, just talk to Denah!
Feel free to check this blog as often as you like and we will try to keep you posted as best we can!
Brock Perry rm. 6268
550 N. University Blv.
Indianapolis, IN 46202
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