Ok, ok. I guess I didn't realize you all are still following this, so, here goes. I think part of me was done following it too though. I will never forget when Wyatt looked at me and said, "Mom why are you so stressed? It's over, he's home" How I wish I saw this through his mind. But it is not over, though every day we are a little closer. So since Easter so much has happened.
First the feeding tube is out, and the stoma is healing well. His trach scar is hardly noticeable any more! Next he was cleared to drive. Really big news. He is mobile! Things were progressing right along. Therapy happens three times a week and he has a pool pass for HealthSouth. The progress is slow, but still evident. When he walks a lot he should wear his foot braces (AFOs), as his ankles still are not up to par. I notice small things often. His hug is getting stronger, he is opening jars, and has even played ping-pong with Wyatt. Wyatt won, but he did well until he had to pick up the ball. Just doesn't have the dexterity yet. He is also able to work a bit around the house with dished, picking up, vacuuming.
But then, a little bump in the road. We were back in the ER a few weeks ago for about 11 hours. The doctor said he wanted him off one of the pain meds, so Jim quit taking them once the prescription ran out. Oops. Methadone withdrawals... not so much fun. It took a few days, but he had some typical symptoms... vomiting, chills, shakes, sweating. To get him out of that state took so much medication. Hugh amounts of all sorts of cocktails, and then he walked out of the ER! He seemed pretty clear, felt great. But, again, no. He didn't remember most of the ER visit, and it took about 2 days before he could talk with out slurring, and stay awake for more than 6 hours a day. He seems to be rebounding ok. He lost a week of therapy and his body went through 12 hours of misery. But we are back on track and making some progress again. On his balance test he has gone from a 90 year old man to a 70 year old man. He even climbed a ladder in PT at HealthSouth this week. He has even gone to work a few days in the past weeks. Not for very long, and not doing anything too difficult, but at least it helps him feel productive.
I have been back to work as usual. Though I still have heavy concerns everyday, I look forward to tomorrow being another day, and one day closer to a better day. We still need your positive thoughts and prayers. It's nice also to be distracted by Wyatt's middle school "passage" which apparently is the 2010 version of graduation... but I guess that is for an entirely different blog. So please keep the support coming our way. Though Mr. Sunshine is still trying to be present, there are clouds. But we are learning to live the Lawrence philosophy and try everyday to make it a great day!
Thursday, May 20, 2010
Sunday, April 4, 2010
Happy Easter! So another weekend not in the hospital! Jim is doing well. Everyday small firsts... he stood in the shower and opened his own can of soda! Today, he was inspired! The news came by to check on his progress. Once the word was out that a story about coach Jimbo was being done, we had a house full of hockey players! The story was broadcast on our local news at 10p. To see the story, follow the link: http://www.newsfirst5.com/news/doherty-hockey-team-coaching-coach-to-recovery/
Thursday, April 1, 2010
Well almost a week at home, and still going! We are not seeing the dramatic changes at home that we saw while at rehab, but really now ,he has function back, just not strength. And that will take a long time to regain. He had his out patient rehab visit today. It was mostly an evaluation to see where he is, with a few new exercises to do at home. He will have weekly out patient appointments. I am going to have a physical therapist from my work come by and see him as well. Right now, walking is challenging and tiring. Plus he has to do stairs all over our house. At Healthsouth, he used a motorized wheelchair to get around. He didn't walk anywhere or stand. So he is realizing that all these "normal" activities take their toll. He also is dealing with follow up appointments everywhere. He saw a dentist today to fix the broken and chipped teeth that resulted from the trach horror. Because he bit down and flailed around so much while the hard plastic tubes were in his mouth, he strained his jaw and chipped some teeth. He has jaw exercises to do, and a couple of dental appointments to get the teeth fixed.
He still has the feeding tube in his stomach. Still a source of stress. It's just annoying now. He has to flush it twice a day, which just means he shoots water into it with a big syringe. It's interesting. We were flushing it the other night and in the middle we laughed about something and stomach stuff squirted across the room, and all over him. We found out this week that to remove it, it will be an outpatient surgical procedure. Apparently it is sutured inside him, so they go in through the tube to un-suture it. And this necessitates more than just an office visit. So, April 15th, we will be back at the hospital for part of the day to have it removed.
So now we just work on strength, stamina and endurance. All therapists we hear from say this will take months. Several days this week, he had multiple appointments, and walked the neighborhood. At the end of the day, he had trouble getting up off the couch. He just had no energy or strength. His therapist today told him one thing on one day. He just can't tolerate too much each day. He needs to slow down some. I could see the look of surprise on his face when she said it will need to be this way for several months. So he will now need to focus on strength exercises at home and realize that just because he is home, doesn't mean he can cook and clean! He has to stay put. You all know him, this will not be easy for him. Cabin fever will set in soon. For now, we still take it one day at a time. The days are nicer now that he is home... but still a long journey ahead. Please continue to keep us in your thoughts and prayers.
He still has the feeding tube in his stomach. Still a source of stress. It's just annoying now. He has to flush it twice a day, which just means he shoots water into it with a big syringe. It's interesting. We were flushing it the other night and in the middle we laughed about something and stomach stuff squirted across the room, and all over him. We found out this week that to remove it, it will be an outpatient surgical procedure. Apparently it is sutured inside him, so they go in through the tube to un-suture it. And this necessitates more than just an office visit. So, April 15th, we will be back at the hospital for part of the day to have it removed.
So now we just work on strength, stamina and endurance. All therapists we hear from say this will take months. Several days this week, he had multiple appointments, and walked the neighborhood. At the end of the day, he had trouble getting up off the couch. He just had no energy or strength. His therapist today told him one thing on one day. He just can't tolerate too much each day. He needs to slow down some. I could see the look of surprise on his face when she said it will need to be this way for several months. So he will now need to focus on strength exercises at home and realize that just because he is home, doesn't mean he can cook and clean! He has to stay put. You all know him, this will not be easy for him. Cabin fever will set in soon. For now, we still take it one day at a time. The days are nicer now that he is home... but still a long journey ahead. Please continue to keep us in your thoughts and prayers.
Friday, March 26, 2010
He's home, he's home!!!! Jimbo came home today. We have mostly just relaxed the day away. Just going up and down the stairs wears him out. He is pretty unsteady, I stay with him any time he goes up or down the stairs, just in case. The dogs are happy to see him. They can't leave his side. He is walking with forearm crutches. He is slow. He will start out patient therapy next week. He will also exercise at home. He was sent with all kinds of things to do to continue his rehab, with bands and putty and leg lifts. His little sister got him a Wii, which is great rehab. If Dallas and Wyatt ever get off it, Jimbo might get to play. It is very exciting to have him home. Hopefully someone will install the hand held shower head soon so he can bathe! Not sure how tomorrow will go. The best thing about rehab is that Jimbo earned a nick name... Mr. Sunshine! I think life as we have known it, has changed!!!
Monday, March 22, 2010
Wow...sorry it's been so long. It has been quite a week. Jim is making great strides every day!This week he passed his shower and getting dressed test! He has an electric wheel chair and is amazingly independent! He still gets tired very easily, but everyday gets a bit stronger. The first day at HealthSouth it took three people to move him from the bed to a wheel chair, a week later, he could transfer himself! He has started to walk! It is crazy to watch. He looks like a six foot tall toddler! His big obstacle right now is ankles and toes. His toes are just now starting to wiggle and his ankles can't pull his feet up, yet. The big event this week is his home evaluation. The therapists will come over to our house and see how we need to make it safe for him to come home. Things like handrails on stairs, no scatter rugs, and bathroom safety equipment. My hope is that things will go well enough that he could come home this weekend. But that is just my hope. As of right now, his discharge date is the 31st. His next issue is the feeding tube. There seems to be some controversy with who needs to remove it. So his attending doctor is communicating with the doctor that installed it and we are awaiting the final verdict. It's pretty cool though, to see what he had for lunch, when I get there after work!!! So the home eval is tomorrow so look for an update. You locals need to go see him. He is getting so antsy. He is so ready to come home. Help him pass the time and go see him or give him a call! Thanks again for all the love and support. Please keep it coming!
Sunday, March 14, 2010
Hello all... so sorry it's been so long. I still haven't figured out how to be in 3 places at once and do 15 things at the same time! Even though Jim got his first shower in almost 3 weeks, rehab did not go as we intended. So, rehab should have been "Oh crappy day"! It was a rough first 24 hours. The transition was abrupt, from having a nurse at his beck and call to having a nurse with 10 other patients. It did not seem as if much of the nursing staff understood what GBS recovery was at all. I think our expectations of rehab were not realistic. Not so much unrealistic, as just unknown. And no one explained it to us for 36 hours. Once we sat down with the doctor the next day, he seemed to be able to get every one on the same page. Since Wednesday, we have a much better understanding of what rehab is and how we might adapt. Of course adaptations is subjective and a work in progress, but we keep plugging on.
So, Jim continues to make daily progress. Tuesday morning the Occupational Therapist came in to assist with his shower. Once she saw how limited his abilities were she said he would get a bed bath. His face sunk. She saw his expression and got him into a shower chair. But it took three people to do it. Tonight I helped Jim with his shower and he did most of it himself! At the beginning of the week Jim could not drink or eat himself. Now he is eating a regular diet and can use utensils for most foods. Soups are still a challenge, but he's never been a big fan of soup anyway! He is not standing or walking yet, but they had him on a walking simulator a few times this week and in a standing frame. He can sit up on the side of the bed all by himself.
The trach is gone!!!!! He has a small scab in his neck, probably won't even have much of a scar. One of the highlights of the first 24 hours was the fart sounds that Jim was blowing out of the hole in his neck! The Respiratory Therapist said it was the best stomas he has ever seen! You clinical folks should appreciate that! I wanted to embellish his hole with a diamond, but since I have a CZ budget, I didn't want his neck bling to be tacky!!!
He still has the feeding tube, but it hasn't been used since Tuesday. Jim is eating anything he wants, including home made baked goods! (Megan the chocolate chip cookies rocked!) The tube has to stay in for 6 weeks before it can be pulled. It just seems to get in his way and be a bother.
Jim's dad is in town and helping with his care. He spends his day at rehab with Jim. So, in a sense, Jim does still have a nurse at his beck and call! I come by usually at lunch and then after work and stay until I get kicked out at 8p when visiting hours end. Whatever.
So a typical day for Jim consists of breakfast at 8a. He can have it in his room. The doctor wants him to conserve his energy for therapy. Somewhere between 9a and 10a he has an hour to an hour and a half of either physical or occupational therapy. He tried an hour of group therapy one day after his morning session, but he did not quite have the energy, mobility, stamina to keep up. H was pretty frustrated when the 72 year old woman next to him was kicking his butt!!! The doctor said his rehab would need to be slow and steady. But as most of you know, slow and steady his not Jim's style! Especially when there is a 72 year old woman involved! Anyway, he usually has a little break after the first session, then lunch. After lunch he has another therapy session. Visiting hours are from 4p to 8p. Then they escort me out. Jim usually watches TV for a little then tries to sleep. He's pretty happy that he can change the channel on his little TV all by himself now!
My parents leave tomorrow. It has been great to have them here so long. Half of my refrigerator is clean and my laundry is done! They were a huge help for Wyatt to get the rest of his room down to the basement! And for me, knowing that Wyatt, Larry, Beaver and Crosby were well fed and not left in the back yard for too long, allowed me to concentrate on Jim's care. Again, I thought once he was in rehab, working, and life would be easier. But it isn't. Hopefully it will get easier. I think we are better adjusted now, so hopefully this will be a better week!
As always I want to thank all of you for your continued support. We still need to know you are all out there thinking of us. I let Jim know of all your calls, cards, texts as they come. This week has been an emotional roller coaster for Jim. He is having to work harder everyday. With every bit of progress he makes, it also makes everything harder, as his staff then expects more from him. It has been rough for him to recognize his progress, even though it is night and day since his arrival to rehab. He is still under the constant reminder of all that he still can't do, and all that he was able to do just a little over a month ago. So, keep the support coming. Come by and see him at rehab. As I said, visiting hours are from 4p to 8p daily. Sundays you can come anytime!
The anticipated date of discharge is March 31st!!! On the one hand, YEA!!! He may come home in less than 3 weeks! On the other hand, it sounds again overwhelming. Will he be walking by then? How will he get into our tri-level house. What will that be like. But we are still on the one day at a time mentality. So, for now, every day is a new day. Jim's CNA wrote on his board, "make it a good day" and that is what we try for!
So, Jim continues to make daily progress. Tuesday morning the Occupational Therapist came in to assist with his shower. Once she saw how limited his abilities were she said he would get a bed bath. His face sunk. She saw his expression and got him into a shower chair. But it took three people to do it. Tonight I helped Jim with his shower and he did most of it himself! At the beginning of the week Jim could not drink or eat himself. Now he is eating a regular diet and can use utensils for most foods. Soups are still a challenge, but he's never been a big fan of soup anyway! He is not standing or walking yet, but they had him on a walking simulator a few times this week and in a standing frame. He can sit up on the side of the bed all by himself.
The trach is gone!!!!! He has a small scab in his neck, probably won't even have much of a scar. One of the highlights of the first 24 hours was the fart sounds that Jim was blowing out of the hole in his neck! The Respiratory Therapist said it was the best stomas he has ever seen! You clinical folks should appreciate that! I wanted to embellish his hole with a diamond, but since I have a CZ budget, I didn't want his neck bling to be tacky!!!
He still has the feeding tube, but it hasn't been used since Tuesday. Jim is eating anything he wants, including home made baked goods! (Megan the chocolate chip cookies rocked!) The tube has to stay in for 6 weeks before it can be pulled. It just seems to get in his way and be a bother.
Jim's dad is in town and helping with his care. He spends his day at rehab with Jim. So, in a sense, Jim does still have a nurse at his beck and call! I come by usually at lunch and then after work and stay until I get kicked out at 8p when visiting hours end. Whatever.
So a typical day for Jim consists of breakfast at 8a. He can have it in his room. The doctor wants him to conserve his energy for therapy. Somewhere between 9a and 10a he has an hour to an hour and a half of either physical or occupational therapy. He tried an hour of group therapy one day after his morning session, but he did not quite have the energy, mobility, stamina to keep up. H was pretty frustrated when the 72 year old woman next to him was kicking his butt!!! The doctor said his rehab would need to be slow and steady. But as most of you know, slow and steady his not Jim's style! Especially when there is a 72 year old woman involved! Anyway, he usually has a little break after the first session, then lunch. After lunch he has another therapy session. Visiting hours are from 4p to 8p. Then they escort me out. Jim usually watches TV for a little then tries to sleep. He's pretty happy that he can change the channel on his little TV all by himself now!
My parents leave tomorrow. It has been great to have them here so long. Half of my refrigerator is clean and my laundry is done! They were a huge help for Wyatt to get the rest of his room down to the basement! And for me, knowing that Wyatt, Larry, Beaver and Crosby were well fed and not left in the back yard for too long, allowed me to concentrate on Jim's care. Again, I thought once he was in rehab, working, and life would be easier. But it isn't. Hopefully it will get easier. I think we are better adjusted now, so hopefully this will be a better week!
As always I want to thank all of you for your continued support. We still need to know you are all out there thinking of us. I let Jim know of all your calls, cards, texts as they come. This week has been an emotional roller coaster for Jim. He is having to work harder everyday. With every bit of progress he makes, it also makes everything harder, as his staff then expects more from him. It has been rough for him to recognize his progress, even though it is night and day since his arrival to rehab. He is still under the constant reminder of all that he still can't do, and all that he was able to do just a little over a month ago. So, keep the support coming. Come by and see him at rehab. As I said, visiting hours are from 4p to 8p daily. Sundays you can come anytime!
The anticipated date of discharge is March 31st!!! On the one hand, YEA!!! He may come home in less than 3 weeks! On the other hand, it sounds again overwhelming. Will he be walking by then? How will he get into our tri-level house. What will that be like. But we are still on the one day at a time mentality. So, for now, every day is a new day. Jim's CNA wrote on his board, "make it a good day" and that is what we try for!
Monday, March 8, 2010
Oh happy day!!! Jimbo was transferred to HealthSouth today! It is a rehab hospital where he will get at least 3 hours a day of therapy! Not much happened at HealthSouth as he got there after 3p. Tomorrow will be a big day for him!
So...what else have you missed? Jim continues to improve daily. He has not needed the vent since last Wed and by this past weekend, did not even need oxygen, meaning he is breathing on his own, very solidly! Sunday they capped off the trach. They like to keep it in, just in case. My guess is that they will pull the entire trach out this week! Even though he tires very easily, he fights hard to keep moving whatever he can. He is now able to touch his face with both hands. His fingers and wrists are not as strong. He can move his legs a little, but not toes or ankles. Even his core muscles are getting stronger. Today he balanced while sitting on the side of the bed, and could even bend forward a bit!
He still is using the peg tube for nutrition, but has also started a pureed diet. Mmmm. Most items look like cat food. But he wants the liquid nutrition to stop, so he gets most of it down! As soon as he can eat real food, I will have to smuggle in some Drifters!
Jimbo had an unexpected visit Saturday evening. The Doherty hockey team brought him some year end prizes. There are only supposed to be 2 people in the ICU rooms at a time, but we had about 35! Jimbo had tears in his eyes when the team brought it in over his bed and said, "1..2...3...Jimbo!" He definitely felt the love, and is motivated to be back 100% next season.
I am very anxious for tomorrow. All the therapies will evaluate him and set goals for his rehab! I just don't know what to expect. I tell people how their rehab will go, every day at work, but when it comes to my own husband, I have butterflies just thinking about it! I know they will work him hard, and he is looking forward to it! According to the schedule for tomorrow, he may even get to shower! Oh happy day!
So...what else have you missed? Jim continues to improve daily. He has not needed the vent since last Wed and by this past weekend, did not even need oxygen, meaning he is breathing on his own, very solidly! Sunday they capped off the trach. They like to keep it in, just in case. My guess is that they will pull the entire trach out this week! Even though he tires very easily, he fights hard to keep moving whatever he can. He is now able to touch his face with both hands. His fingers and wrists are not as strong. He can move his legs a little, but not toes or ankles. Even his core muscles are getting stronger. Today he balanced while sitting on the side of the bed, and could even bend forward a bit!
He still is using the peg tube for nutrition, but has also started a pureed diet. Mmmm. Most items look like cat food. But he wants the liquid nutrition to stop, so he gets most of it down! As soon as he can eat real food, I will have to smuggle in some Drifters!
Jimbo had an unexpected visit Saturday evening. The Doherty hockey team brought him some year end prizes. There are only supposed to be 2 people in the ICU rooms at a time, but we had about 35! Jimbo had tears in his eyes when the team brought it in over his bed and said, "1..2...3...Jimbo!" He definitely felt the love, and is motivated to be back 100% next season.
I am very anxious for tomorrow. All the therapies will evaluate him and set goals for his rehab! I just don't know what to expect. I tell people how their rehab will go, every day at work, but when it comes to my own husband, I have butterflies just thinking about it! I know they will work him hard, and he is looking forward to it! According to the schedule for tomorrow, he may even get to shower! Oh happy day!
Thursday, March 4, 2010
Hello again...
So many good things to report. Jimbo has been off the vent since yesterday morning at 7am. This is huge! In order to qualify for a rehab hospital, he can not be vent dependent. He even breathed on his own with out needing additional oxygen most of today. The down turn to that though, is that breathing fatigues him. Crazy that!
The other great news is that he continues to regain muscle movement. Today he was able to touch his face with his left hand!!!!! Again, the down turn is moving, even the little bit he can, fatigues him. This evening when we were at the hospital, he couldn't do it again. He was just too tired.
The next great news is that he may be transferred to HealthSouth, a rehab hospital, Monday or Tuesday! They are feeling confident that he will not need the vent again, just maybe a little oxygen here and there. At HealthSouth he will still have 24 hour nursing, but will also have 3 hours a day of therapy. Much more intense then what the ICU does!
He passed his swallow eval and they cleared him to start eating by mouth. However starting yesterday, he feels full and bloated all the time. They changed his nutrition, and some meds, and have done a few tests. Hopefully they will get this resolved soon. He is just uncomfortable, and was pretty excited about food by mouth! But that is on hold until they can get the "verps" and bloating under control.
Our next issue is dizziness. The next step in therapy is for him to sit up. He gets dizzy every time they sit him up though. Apparently this is not unusual when you have been laying down constantly for 2 weeks. But they will keep trying every day.
The dogs got to visit this week. We took Beaver first thinking she would be the best and most appreciative. Not true. She bit Jimbo's favorite nurse. She is a bad egg. So tonight we took Crosby. He was the best and most appreciative. He had so much fun! All the nurses loved him, but couldn't go near Beaver. Crosby was so happy to see his Alpha Male, he just licked and licked Jimbo. And everyone else.
Jimbo continues to be in good spirits even though the stomach issues and dizziness are frustrating for him. He will continue to fight and loves to show off for his visitors. Come on by to say hi!
I've started working a bit this week. Trying to get into a routine. I'm not very good at it so far. But I will keep keepin' on. I know you are all on our side. We are lucky to have you all in our lives. Thank you again!
Lu
So many good things to report. Jimbo has been off the vent since yesterday morning at 7am. This is huge! In order to qualify for a rehab hospital, he can not be vent dependent. He even breathed on his own with out needing additional oxygen most of today. The down turn to that though, is that breathing fatigues him. Crazy that!
The other great news is that he continues to regain muscle movement. Today he was able to touch his face with his left hand!!!!! Again, the down turn is moving, even the little bit he can, fatigues him. This evening when we were at the hospital, he couldn't do it again. He was just too tired.
The next great news is that he may be transferred to HealthSouth, a rehab hospital, Monday or Tuesday! They are feeling confident that he will not need the vent again, just maybe a little oxygen here and there. At HealthSouth he will still have 24 hour nursing, but will also have 3 hours a day of therapy. Much more intense then what the ICU does!
He passed his swallow eval and they cleared him to start eating by mouth. However starting yesterday, he feels full and bloated all the time. They changed his nutrition, and some meds, and have done a few tests. Hopefully they will get this resolved soon. He is just uncomfortable, and was pretty excited about food by mouth! But that is on hold until they can get the "verps" and bloating under control.
Our next issue is dizziness. The next step in therapy is for him to sit up. He gets dizzy every time they sit him up though. Apparently this is not unusual when you have been laying down constantly for 2 weeks. But they will keep trying every day.
The dogs got to visit this week. We took Beaver first thinking she would be the best and most appreciative. Not true. She bit Jimbo's favorite nurse. She is a bad egg. So tonight we took Crosby. He was the best and most appreciative. He had so much fun! All the nurses loved him, but couldn't go near Beaver. Crosby was so happy to see his Alpha Male, he just licked and licked Jimbo. And everyone else.
Jimbo continues to be in good spirits even though the stomach issues and dizziness are frustrating for him. He will continue to fight and loves to show off for his visitors. Come on by to say hi!
I've started working a bit this week. Trying to get into a routine. I'm not very good at it so far. But I will keep keepin' on. I know you are all on our side. We are lucky to have you all in our lives. Thank you again!
Lu
Sunday, February 28, 2010
Hi all...
Sorry it has been a few days. But there have been some exciting things going on! First, they are working on his pain meds. The new med usually works well for GB patients. It's methadone. They will gradually get him off the fentanyl drip and he will have the methadone and neurontin. Both are oral so when he is ready, he will not need the IV just for pain meds.
The feeding tube came out of his nose and is now in his stomach. Less chance of infection and definitely more comfortable for him!
Next, respiratory. The have had him breathing on his own for short times over the past 3 days. They disconnect the vent and put humidified oxygen in front of the trach and he breathes on his own! Yesterday they put a valve on the trach that allowed him to talk. It was rough and he coughed a lot, but he was able to say hi to me and said " Diane is my favorite nurse." She was giving him pain meds at the time... but it was a full sentence! With the vent collar deflated in his throat, he was pretty uncomfortable. His throat feels very scratchy, and it is. It will take time for him to get used to it. This morning, he has been off the vent for about 3 hours so far!
Next, movement! Yes, he is making huge strides. Yesterday with therapy, he dangled at the side of the bed and looked great! He was working hard to balance his torso with just a little help! This morning at about 4am he was able to flex his right thumb and on his left hand, he closed his thumb and finger to "pinch" my hand. Not a huge movement, but progress! At 10a he flexed muscles in both legs for the neuro doctor that stopped in to see him!
Finally, his attitude. I am constantly amazed at how well he his handling all this! He jokes, laughs, and even gave marriage advice to his night nurse last night. You all know Jimbo... any one of the issues he is dealing with would send him over the edge. Yet, he has kept positive and works hard! I have no idea how he is managing so well. He cried on Friday and told me how much this sucks. And it does. But that was it... he really remains in great spirits... and I know so much of that is from the love and support we have received. With every text, message and phone call, I let him know you are all thinking of him and wishing him a speedy recovery. It is working! I am amazed at your support, and have no idea how to thank you all! I know Jim is a great person, and you have all helped him to believe it is true! He truly has many reasons to continue to fight and laugh even in his situation! Please keep it coming. With all the progress, we are far from out of the woods. There is still a long haul ahead, please keep us in your thoughts and prayers. Every bit of it helps and keeps us both strong. You would all be very proud of him!
Last, I am ok. So many of you ask how I am. I am fine. My focus is nothing but Jim. I am at the hospital as much as I can... I want to be there for every bit of progress and for him to know how important he is to me, no matter the circumstance. With all the tubes out of his mouth and nose, we get to kiss. It's the highlight of my day! I still cry a little each day, but just because I feel helpless and cannot fix this. I get some sleep each night, and I am eating, when I remember. If he has a good night nurse, I go home to sleep in my own bed. Usually once every 2 or 3 nights. Wyatt is good as well. Uncle Glyn is here now to entertain him, and my parents will stay here until I tell them they can go... not for a while yet.
Gotta go shower and eat... then get back to the hospital to watch therapy at 2p. Thanks again for the love and support!!!!!! Lu
Sorry it has been a few days. But there have been some exciting things going on! First, they are working on his pain meds. The new med usually works well for GB patients. It's methadone. They will gradually get him off the fentanyl drip and he will have the methadone and neurontin. Both are oral so when he is ready, he will not need the IV just for pain meds.
The feeding tube came out of his nose and is now in his stomach. Less chance of infection and definitely more comfortable for him!
Next, respiratory. The have had him breathing on his own for short times over the past 3 days. They disconnect the vent and put humidified oxygen in front of the trach and he breathes on his own! Yesterday they put a valve on the trach that allowed him to talk. It was rough and he coughed a lot, but he was able to say hi to me and said " Diane is my favorite nurse." She was giving him pain meds at the time... but it was a full sentence! With the vent collar deflated in his throat, he was pretty uncomfortable. His throat feels very scratchy, and it is. It will take time for him to get used to it. This morning, he has been off the vent for about 3 hours so far!
Next, movement! Yes, he is making huge strides. Yesterday with therapy, he dangled at the side of the bed and looked great! He was working hard to balance his torso with just a little help! This morning at about 4am he was able to flex his right thumb and on his left hand, he closed his thumb and finger to "pinch" my hand. Not a huge movement, but progress! At 10a he flexed muscles in both legs for the neuro doctor that stopped in to see him!
Finally, his attitude. I am constantly amazed at how well he his handling all this! He jokes, laughs, and even gave marriage advice to his night nurse last night. You all know Jimbo... any one of the issues he is dealing with would send him over the edge. Yet, he has kept positive and works hard! I have no idea how he is managing so well. He cried on Friday and told me how much this sucks. And it does. But that was it... he really remains in great spirits... and I know so much of that is from the love and support we have received. With every text, message and phone call, I let him know you are all thinking of him and wishing him a speedy recovery. It is working! I am amazed at your support, and have no idea how to thank you all! I know Jim is a great person, and you have all helped him to believe it is true! He truly has many reasons to continue to fight and laugh even in his situation! Please keep it coming. With all the progress, we are far from out of the woods. There is still a long haul ahead, please keep us in your thoughts and prayers. Every bit of it helps and keeps us both strong. You would all be very proud of him!
Last, I am ok. So many of you ask how I am. I am fine. My focus is nothing but Jim. I am at the hospital as much as I can... I want to be there for every bit of progress and for him to know how important he is to me, no matter the circumstance. With all the tubes out of his mouth and nose, we get to kiss. It's the highlight of my day! I still cry a little each day, but just because I feel helpless and cannot fix this. I get some sleep each night, and I am eating, when I remember. If he has a good night nurse, I go home to sleep in my own bed. Usually once every 2 or 3 nights. Wyatt is good as well. Uncle Glyn is here now to entertain him, and my parents will stay here until I tell them they can go... not for a while yet.
Gotta go shower and eat... then get back to the hospital to watch therapy at 2p. Thanks again for the love and support!!!!!! Lu
Wednesday, February 24, 2010
Hi again... so not much change in status today. He can still move his shoulders, neck, head. We continue to struggle with pain. Not only is he achy laying in bed, but he has tingling pain and numbness because his nerves are exposed and sending strange signals. The other constant issue is temperature control. Because of the strange signals, his body can't regulate it. Though he is not running a fever, he feels hot and sweats. We keep his room at about 50 degrees, and keep ice packs and cool wash cloths on him.
He finished the initial IVIG treatment. There is no way to know if it did anything. It may have slowed the progress, but maybe not. Yesterday he started plasma-farisis (sp? where is a nurse when I need one!) where they pump his blood out of him, clean it out, mix clean plasma into it and pump it back in. He has dialysis ports (caths) in his neck that they use for the process. The theory is if we clean out the bad, the faster the recovery. But again, "theory". This may not change anything. So we wait.
We have a dry erase board we use for communication so he can use blinks when I point to the letter. It takes a while, but I am getting better at reading his lips. Sometimes though, he is so well medicated that he mumbles. When his lips don't move it's hard to read them. He had a swallow evaluation today, but his muscles are not strong enough yet to swallow. He will continue to be fed through a tube in his nose for another day or two then, if he still can't swallow, they will put a feeding tube into his stomach.
I thought I would be able to write from the hospital, but it is blocked. I will get to this when I can. Thanks again for all the calls, visits, texts and support! It is welcome and needed! Lu
He finished the initial IVIG treatment. There is no way to know if it did anything. It may have slowed the progress, but maybe not. Yesterday he started plasma-farisis (sp? where is a nurse when I need one!) where they pump his blood out of him, clean it out, mix clean plasma into it and pump it back in. He has dialysis ports (caths) in his neck that they use for the process. The theory is if we clean out the bad, the faster the recovery. But again, "theory". This may not change anything. So we wait.
We have a dry erase board we use for communication so he can use blinks when I point to the letter. It takes a while, but I am getting better at reading his lips. Sometimes though, he is so well medicated that he mumbles. When his lips don't move it's hard to read them. He had a swallow evaluation today, but his muscles are not strong enough yet to swallow. He will continue to be fed through a tube in his nose for another day or two then, if he still can't swallow, they will put a feeding tube into his stomach.
I thought I would be able to write from the hospital, but it is blocked. I will get to this when I can. Thanks again for all the calls, visits, texts and support! It is welcome and needed! Lu
Monday, February 22, 2010
Hi friends... just wanted a place where you all can catch up on Jimbo's condition. " Hi" from Wyatt. It is called Guillain-Barre Syndrom. There is a ton of info if you google it that can answer most of your questions. The biggest challenge is that we just don't know enough about the condition to predict what the future holds. From what I understand, this will be a long haul. I can't say thank you enough to all the support and love that has poured in. We are very lucky to have you in our lives.
Today, they put a trach in. With this he will hopefully be able to talk and eat eventually. He is basically paralyzed from the neck down, yet can feel everything. For now we are waiting. Waiting for the paralysis to reverse, waiting for the pneumonia to clear, waiting to find the right mix of meds to manage his severe pain that will not subside. My days and nights are spent at the hospital doing range of motion with his joints, finding his nurse to change his position, or just holding his hand and rubbing his forehead. I am exhausted.
I will try to post as often as there is news. There will be days with no changes. I'm new at blogging so bear with me! Again thanks for the support! Please keep it coming.
Today, they put a trach in. With this he will hopefully be able to talk and eat eventually. He is basically paralyzed from the neck down, yet can feel everything. For now we are waiting. Waiting for the paralysis to reverse, waiting for the pneumonia to clear, waiting to find the right mix of meds to manage his severe pain that will not subside. My days and nights are spent at the hospital doing range of motion with his joints, finding his nurse to change his position, or just holding his hand and rubbing his forehead. I am exhausted.
I will try to post as often as there is news. There will be days with no changes. I'm new at blogging so bear with me! Again thanks for the support! Please keep it coming.
Subscribe to:
Posts (Atom)