Sorry for the delay since the last post.
The past couple of weeks are a reminder that sometimes you take a step back. We have had to sit and watch Steve's strength diminish to where standing transfers require much more effort on our part. The swallow test has been postponed again due to a decrease in the control of facial/mouth and throat muscles and of course Steve is not talking as he was before.
As a result of the seizure Steve has to be on Keppra which really affects him. Doctors are planning on increasing the dose, and Steve should have to be on it for 2 years to be safe. We have also discontinued the Amantadine totally as that could also have contributed to the seizure.
I find it so hard to believe that a 45 second seizure could put Steve in such a situation. We know the seizure did no harm to him and that it is the Keppra that is causing these symptoms. The discontinuation of a stimulant and the addition of seizure preventative medicine has really had an adverse effect. The Neurology doctors (we have them now that a seizure has occurred), are the ones making these recommendations. Our rehab doctors are working with us to try and find an appropriate medication "cocktail" to get Steve back on track.
They have extended Steve's stay again, to August 15th.
Throughout all of this, Steve continues to believe he is no worse now than before, and of course his work ethic has not changed. There are also times where Steve seems to be his old self, usually in the evening.
We have been granted permission to try practice swallowing of various substances and Steve has had his first taste of pudding, ice cream, and very small pieces of a Graham cracker - since February.
We have also noticed, that there are times when Steve can hold his head up, walk well in PT , and communicate verbally in Speech. They say that the body can "get used to" Keppra, and maybe we are seeing the beginning of this.
We also have an appointment with the Neurosurgeon that replaced the bone flap, and plan to discuss the latest head CT with him.
You may ask why not just decrease the Keppra? We are told that the consequences of another seizure could in fact be anywhere from mild to fatal. Given that answer, we cannot rush in to anything.
With the help of your positive thoughts and prayers we have made it through worse than this. We will get Steve back on the positive track, believe it!
Thank you all.
Rob
Thursday, July 31, 2008
Thursday, July 24, 2008
Update #83 from Rob
Hello all,
Wanted to let you know that Steve's' swallow test has been postponed for another week. The doctors think the anti-seizure medication he is on is having an effect on his control of facial and other muscles. We have seen a slight regression also and agree that it is not worth exposing him to the radiation if he doesn't have a better chance to pass the test. His stay has also been extended to August 1st.
The Docs have discontinued the muscle relaxant and one of the stimulants that Steve was on. They plan to try another type of stimulant med that doesn't last as long in the bloodstream.
We are again reminded of the statement that the Neuro people in Bethesda told us: This is a marathon not a sprint. There will be good days and bad. Don't take the "highs" to high NOR the "lows" too low.
As Steve has done in the past, he will adapt to these changes and move on. Just knowing that he is capable of controlling these muscles to a higher level, will allow him to get back to where he was previously, and we will all be here to give support and watch him recover!
Just a note about Mary/Grams, it seems she was so busy making sure the other team members got their breakfast/lunch/dinner etc... she forgot to take care of herself. Her doctor has pronounced her in good health and she is now eating more often and is back to "normal" --whatever that is .....................Can you tell I'm the son-in-law?
Thank you all.
Rob
Wanted to let you know that Steve's' swallow test has been postponed for another week. The doctors think the anti-seizure medication he is on is having an effect on his control of facial and other muscles. We have seen a slight regression also and agree that it is not worth exposing him to the radiation if he doesn't have a better chance to pass the test. His stay has also been extended to August 1st.
The Docs have discontinued the muscle relaxant and one of the stimulants that Steve was on. They plan to try another type of stimulant med that doesn't last as long in the bloodstream.
We are again reminded of the statement that the Neuro people in Bethesda told us: This is a marathon not a sprint. There will be good days and bad. Don't take the "highs" to high NOR the "lows" too low.
As Steve has done in the past, he will adapt to these changes and move on. Just knowing that he is capable of controlling these muscles to a higher level, will allow him to get back to where he was previously, and we will all be here to give support and watch him recover!
Just a note about Mary/Grams, it seems she was so busy making sure the other team members got their breakfast/lunch/dinner etc... she forgot to take care of herself. Her doctor has pronounced her in good health and she is now eating more often and is back to "normal" --whatever that is .....................Can you tell I'm the son-in-law?
Thank you all.
Rob
Tuesday, July 22, 2008
thursday
OK, everyone...Steve is having a swallow test Thursday AM. PLEASE send positive thoughts and prayers his way!!!
Also, since he has to get up so early on Thursday, we're asking that he have no visitors Wednesday evening. Thanks for understanding. :)
Love,
Linda
Also, since he has to get up so early on Thursday, we're asking that he have no visitors Wednesday evening. Thanks for understanding. :)
Love,
Linda
Monday, July 21, 2008
update #82 from Linda
Hello! Just a little update...
Steve's feeding tube was replaced on Thursday, at which time they discovered that the old one was misplaced and blocking the opening from his stomach to his intestines, as well as pressing on (and causing inflamation of) an artery. Said these factors could cause nausea and pain, which could explain the discomfort he had been experiencing recently. They replaced it with no sedation, which we would not do again. Steve said it was pretty uncomfortable, but he did OK. We're all glad to have that taken care of!
On Friday they gave him botox injections in his inner thighs. Another uncomfortable procedure, but he hung in there. It's too early to tell if it will help with his walking, but we're hopeful. Rob noticed that he isn't as stiff-legged as he was before, and seems to want to bend his knees (more like you or I would do). I felt that he had better control today of his left foot. But, of course, it could be wishful thinking on our part! We'll keep you posted.
Steve spent a couple hours on his computer today and I was remembering the first time he used it (a couple months ago) and how much better he is at it. He types in his passwords, etc. and can handle things like disconnecting his cordless mouse. Beth made some changes that make it easier to see some things on the screen, which has helped a lot. I also think, in general, that his vision is improving. It's also noticeable when he drives his motorized wheelchair...not so many crashes!
He did a good amount of talking in speech today, which is great for a Monday. He struggles with speech, especially in a setting when he's asked to repeat things. It's much easier for him when he's laying in bed and having a conversation with someone.
Our weekend was nice. Saw a movie on Saturday, and went home for a few hours on Sunday. Steve hasn't been home in 5 months. It was an emotionally challenging day for everyone, I think, but such a good thing to do. Some changes are going to be made to our house, so I'm glad he got to see it before things started happening there.
Adjustments have been made to his meds, which we're continuing to keep an eye on. Sometimes we think he seems weaker or more tired, but are not really sure about that at this point. We'll keep you posted.
As always, thanks for the kind thoughts being sent his way. They mean so much.
Have a good Monday!
Love,
Linda
Steve's feeding tube was replaced on Thursday, at which time they discovered that the old one was misplaced and blocking the opening from his stomach to his intestines, as well as pressing on (and causing inflamation of) an artery. Said these factors could cause nausea and pain, which could explain the discomfort he had been experiencing recently. They replaced it with no sedation, which we would not do again. Steve said it was pretty uncomfortable, but he did OK. We're all glad to have that taken care of!
On Friday they gave him botox injections in his inner thighs. Another uncomfortable procedure, but he hung in there. It's too early to tell if it will help with his walking, but we're hopeful. Rob noticed that he isn't as stiff-legged as he was before, and seems to want to bend his knees (more like you or I would do). I felt that he had better control today of his left foot. But, of course, it could be wishful thinking on our part! We'll keep you posted.
Steve spent a couple hours on his computer today and I was remembering the first time he used it (a couple months ago) and how much better he is at it. He types in his passwords, etc. and can handle things like disconnecting his cordless mouse. Beth made some changes that make it easier to see some things on the screen, which has helped a lot. I also think, in general, that his vision is improving. It's also noticeable when he drives his motorized wheelchair...not so many crashes!
He did a good amount of talking in speech today, which is great for a Monday. He struggles with speech, especially in a setting when he's asked to repeat things. It's much easier for him when he's laying in bed and having a conversation with someone.
Our weekend was nice. Saw a movie on Saturday, and went home for a few hours on Sunday. Steve hasn't been home in 5 months. It was an emotionally challenging day for everyone, I think, but such a good thing to do. Some changes are going to be made to our house, so I'm glad he got to see it before things started happening there.
Adjustments have been made to his meds, which we're continuing to keep an eye on. Sometimes we think he seems weaker or more tired, but are not really sure about that at this point. We'll keep you posted.
As always, thanks for the kind thoughts being sent his way. They mean so much.
Have a good Monday!
Love,
Linda
Saturday, July 19, 2008
weekend
Hi! Wanted you to know that we are going to take Steve "out" for a few hours this Saturday and Sunday. So, if you plan to visit him this weekend, please call first to make sure we are there. 248-568-6091 (Linda), 248-568-6092 (Rob)
Does anyone have any ideas about where we can take him?
Thanks, and have a nice weekend!
Does anyone have any ideas about where we can take him?
Thanks, and have a nice weekend!
Wednesday, July 16, 2008
Update #81 from Linda
Hello! Yesterday was a little crazy...
They decided Steve's feeding tube has to be changed. It's leaking on the outside, and taped to contain the leak, but the time has come for a new one. Nothing urgent. It will be done by threading a guide wire along the one he has, removing it, and putting a new one in. No surgery or plans for sedation.
Dr. Kelly has decided the time has come to use botox to relax Steve's inner thigh muscles. He'll probably inject it one day this week - several shots in each thigh. It takes a week to take effect, and lasts for 3-6 months. They think this will help with his walking and give his outer thigh muscles a chance to get stronger without fighting the ones in his inner thigh, and reduce his tendency to walk with a sort of "scissor" gait.
The neuro doctors visited and made recommendations regarding meds. At this point Steve is considered to be someone who has had a seizure, but not someone with a seizure disorder. Anyone can have a seizure for a number of reasons, and many people do. But his seizure "threshold" is most likely lower due to his injury, and they want to find the right combination of meds to make sure he doesn't have another, and keep him alert at the same time. His new doctors (in rehab) are Dr. Kelly and Dr. Kendall, and they have been wonderful, and are on top of this issue. They changed a few things starting today, and will be tracking Steve's reaction and making adjustments as we go forward.
While all this was going on (and it was all going on at pretty much the same time) we got a phone call from Grams to say that she was in emergency after having some weird symptoms on the way to the car. So Steve and I visited her there, which was quite a sight for the people in emergency! It was pretty funny to have Steve be the visitor instead of the patient...we all had a few laughs over that! They ran some tests, and think Grams was de-hydrated...she's following up with her doctor. :)
Needless to say, Steve pretty much slept through all his visitors last night. He needs lots of sleep anyway, but yesterday really wore him out. It was a good day though, with things getting discussed and resolved.
Have a nice Wednesday, everyone!
Love,
Linda
They decided Steve's feeding tube has to be changed. It's leaking on the outside, and taped to contain the leak, but the time has come for a new one. Nothing urgent. It will be done by threading a guide wire along the one he has, removing it, and putting a new one in. No surgery or plans for sedation.
Dr. Kelly has decided the time has come to use botox to relax Steve's inner thigh muscles. He'll probably inject it one day this week - several shots in each thigh. It takes a week to take effect, and lasts for 3-6 months. They think this will help with his walking and give his outer thigh muscles a chance to get stronger without fighting the ones in his inner thigh, and reduce his tendency to walk with a sort of "scissor" gait.
The neuro doctors visited and made recommendations regarding meds. At this point Steve is considered to be someone who has had a seizure, but not someone with a seizure disorder. Anyone can have a seizure for a number of reasons, and many people do. But his seizure "threshold" is most likely lower due to his injury, and they want to find the right combination of meds to make sure he doesn't have another, and keep him alert at the same time. His new doctors (in rehab) are Dr. Kelly and Dr. Kendall, and they have been wonderful, and are on top of this issue. They changed a few things starting today, and will be tracking Steve's reaction and making adjustments as we go forward.
While all this was going on (and it was all going on at pretty much the same time) we got a phone call from Grams to say that she was in emergency after having some weird symptoms on the way to the car. So Steve and I visited her there, which was quite a sight for the people in emergency! It was pretty funny to have Steve be the visitor instead of the patient...we all had a few laughs over that! They ran some tests, and think Grams was de-hydrated...she's following up with her doctor. :)
Needless to say, Steve pretty much slept through all his visitors last night. He needs lots of sleep anyway, but yesterday really wore him out. It was a good day though, with things getting discussed and resolved.
Have a nice Wednesday, everyone!
Love,
Linda
Friday, July 11, 2008
update #80 from Linda
Hi! Had a little "bump in the road" that I thought you'd want to know about. Steve had a seizure Thursday morning...Danielle heard him making a strange sound, then having other symptoms. THANKFULLY she was there to take care of him and got help quickly. He has been fine ever since. It could have been the result of many different things, but the frustrating part is that they have put him back on meds to control seizures as a precaution. The bad news is that it makes him tired. The good news is that they're working with us to figure out the best times of day to give it to him, so that he can be alert for therapy. We plan on this being just a little bump, considering all that he's been through and dealt with!
Something that we talk about often is that we're always doing things with him in his room similar to what is done in OT...playing cards and other games, using his computer, writing in a journal (thanks, Beth!), throwing a ball back and forth, etc. Today he was wadding up a washcloth and trying to throw it into his garbage can! He is getting really good at all these things. Today Grams said we should get him a nerf basketball hoop, and that is on the agenda for my next shopping trip. Will be good for coordination and vision...we can place it in different spots in his room. He is also getting so much better at driving the motorized wheelchair. There is some issue with his vision (or his brain's interpretation of what he sees) that resulted in him often running into things when driving the chair. Doesn't happen nearly as often now! The other interesting (and maybe gross) thing that happened today is that he said he wanted to rinse his mouth with water and spit it out, like we'd do when brushing our teeth. I gave him a glass of water and a basin, and away he went. The coordination of raising a glass and taking a sip, then swishing the water around amazed us. Not many weeks ago he couldn't even close his mouth.
Uncle Dave...happy birthday! We hope your day was wonderful.
Everyone...have a nice weekend!
Love,
Linda
Something that we talk about often is that we're always doing things with him in his room similar to what is done in OT...playing cards and other games, using his computer, writing in a journal (thanks, Beth!), throwing a ball back and forth, etc. Today he was wadding up a washcloth and trying to throw it into his garbage can! He is getting really good at all these things. Today Grams said we should get him a nerf basketball hoop, and that is on the agenda for my next shopping trip. Will be good for coordination and vision...we can place it in different spots in his room. He is also getting so much better at driving the motorized wheelchair. There is some issue with his vision (or his brain's interpretation of what he sees) that resulted in him often running into things when driving the chair. Doesn't happen nearly as often now! The other interesting (and maybe gross) thing that happened today is that he said he wanted to rinse his mouth with water and spit it out, like we'd do when brushing our teeth. I gave him a glass of water and a basin, and away he went. The coordination of raising a glass and taking a sip, then swishing the water around amazed us. Not many weeks ago he couldn't even close his mouth.
Uncle Dave...happy birthday! We hope your day was wonderful.
Everyone...have a nice weekend!
Love,
Linda
Wednesday, July 9, 2008
update #79 from Linda
Hi! Just wanted to let you know that today in PT Steve was able to push himself up to a stand (from a sitting position on one of their tables)and stand unassisted for many seconds while he did things like adjust his shirt and scratch his head. :) :) :)
Love,
Linda
Love,
Linda
Monday, July 7, 2008
update #78 from Linda
Hello! Steve is working with the OT therapist in his room, so I thought I'd take a minute to update everyone.
First of all, Happy Birthday Uncle Russ!! We all hope your day is wonderful. :)
The biggest thing we've noticed with Steve during the past few days is that he's talking so much more. Complete, long sentences. Not always easy to understand, so we sometimes ask him to say one word at a time, or to air write the first letter, etc. He's writing very little on paper now. The easier it becomes for him to talk, the more he says! Last week they did a massage-type therapy to help loosen up scar tissue around his trach site, and we feel that helped him get his voice going. We'll have a conversation with the doctors about this today, to "keep this ball rolling."
Friday night we went to the Kensington fireworks (thanks for the idea, Russ!) and Saturday to a movie. Both late, but good, nights! When we got home Saturday night, Steve sat on the edge of his bed, leaned over and un-velcroed his sandals, and kicked them off his feet! Beth spent Friday night and she and Steve played cards for a long time Saturday morning. He's getting so much better at things like that. His friend Brian visited last night and Steve asked him about a trip he took. Brian didn't know how Steve found out about it...it turned out that he had read about it on Facebook! We pretty much leave him alone when he's on his computer, so it was a nice surprise to discover what he can do with it.
We're having a little problem with the timing of food, water, and meds which has caused him to be sick a few times. But we have a new plan, so are hoping that this is all figured out.
As I told Brian last night, we are so thankful for the visits from his friends...and he has lots of them. You just can't imagine how good it is for Steve to see you, talk to you, laugh at memories, etc.
Have a good Monday, everyone!
Love,
Linda
First of all, Happy Birthday Uncle Russ!! We all hope your day is wonderful. :)
The biggest thing we've noticed with Steve during the past few days is that he's talking so much more. Complete, long sentences. Not always easy to understand, so we sometimes ask him to say one word at a time, or to air write the first letter, etc. He's writing very little on paper now. The easier it becomes for him to talk, the more he says! Last week they did a massage-type therapy to help loosen up scar tissue around his trach site, and we feel that helped him get his voice going. We'll have a conversation with the doctors about this today, to "keep this ball rolling."
Friday night we went to the Kensington fireworks (thanks for the idea, Russ!) and Saturday to a movie. Both late, but good, nights! When we got home Saturday night, Steve sat on the edge of his bed, leaned over and un-velcroed his sandals, and kicked them off his feet! Beth spent Friday night and she and Steve played cards for a long time Saturday morning. He's getting so much better at things like that. His friend Brian visited last night and Steve asked him about a trip he took. Brian didn't know how Steve found out about it...it turned out that he had read about it on Facebook! We pretty much leave him alone when he's on his computer, so it was a nice surprise to discover what he can do with it.
We're having a little problem with the timing of food, water, and meds which has caused him to be sick a few times. But we have a new plan, so are hoping that this is all figured out.
As I told Brian last night, we are so thankful for the visits from his friends...and he has lots of them. You just can't imagine how good it is for Steve to see you, talk to you, laugh at memories, etc.
Have a good Monday, everyone!
Love,
Linda
Wednesday, July 2, 2008
update #77 from Linda
Hello! Some new and good things that have been happening...
Steve's discharge date has been extended to July 25th! YEAH!
Patrick (his OT therapist) is working with Rob F. (OT clinical specialist) to look into the possibility that scar tissue in Steve's neck is causing problems with speaking, swallowing, and even facial expressions. Rob F. is convinced that this is happening. They're using massage/pressure to release the tightness of the scar tissue, and it seems that as time goes on they'll show us ways to help him, and show Steve ways to help himself. Today they were explaining all this to Steve, as well as explaining the workings of his diaphram. They offered encouragement that they are aware of the challenges he faces, and are going to figure this out and help him get well. His life will be so much nicer when the swallowing issue is resolved!
Patrick is also working with Steve so that he can wash up, get dressed, etc. Today he had him sitting in a regular chair washing his feet. His nurse went in to get something and almost had heart failure, but we are so glad to see him being given such opportunities/challenges! As of a couple days ago he has also graduated to using a regular shower chair instead of the high-backed one that he could be strapped into that he's used all along. So much easier and more comfortable for him, and an indication of the neck/back/shoulder strength he is gaining.
He's been doing lots of walking in PT, needing less support all the time. Today they had him side-stepping, and yesterday using his right hand to bat a balloon back and forth with a friend while standing up. Jason (PT) said he's noticed recently that Steve can relax/unclench both of his hands better than he could even a few days ago.
Uncle Dave and his family stopped by to visit last night. Dave had a moment alone with Steve to share some words of encouragement with him, and to tell him how financially amazing the golf outing was. Out of the corner of my eye I could see Steve's reaction and wished I had a camera so that all of you could see it, too. He couldn't stop grinning. It's hard to think of the words to describe his reaction, but I think it was partly shock, partly thankfulness, partly pure joy, and partly relief (from financial worries he had on his mind). A perfect moment and a wonderful mental boost for him. From the bottom of our hearts, thank you all.
I hope life is good for all of you!
Love,
Linda
Steve's discharge date has been extended to July 25th! YEAH!
Patrick (his OT therapist) is working with Rob F. (OT clinical specialist) to look into the possibility that scar tissue in Steve's neck is causing problems with speaking, swallowing, and even facial expressions. Rob F. is convinced that this is happening. They're using massage/pressure to release the tightness of the scar tissue, and it seems that as time goes on they'll show us ways to help him, and show Steve ways to help himself. Today they were explaining all this to Steve, as well as explaining the workings of his diaphram. They offered encouragement that they are aware of the challenges he faces, and are going to figure this out and help him get well. His life will be so much nicer when the swallowing issue is resolved!
Patrick is also working with Steve so that he can wash up, get dressed, etc. Today he had him sitting in a regular chair washing his feet. His nurse went in to get something and almost had heart failure, but we are so glad to see him being given such opportunities/challenges! As of a couple days ago he has also graduated to using a regular shower chair instead of the high-backed one that he could be strapped into that he's used all along. So much easier and more comfortable for him, and an indication of the neck/back/shoulder strength he is gaining.
He's been doing lots of walking in PT, needing less support all the time. Today they had him side-stepping, and yesterday using his right hand to bat a balloon back and forth with a friend while standing up. Jason (PT) said he's noticed recently that Steve can relax/unclench both of his hands better than he could even a few days ago.
Uncle Dave and his family stopped by to visit last night. Dave had a moment alone with Steve to share some words of encouragement with him, and to tell him how financially amazing the golf outing was. Out of the corner of my eye I could see Steve's reaction and wished I had a camera so that all of you could see it, too. He couldn't stop grinning. It's hard to think of the words to describe his reaction, but I think it was partly shock, partly thankfulness, partly pure joy, and partly relief (from financial worries he had on his mind). A perfect moment and a wonderful mental boost for him. From the bottom of our hearts, thank you all.
I hope life is good for all of you!
Love,
Linda
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