Another good day!! Mark was supposed to have an MRI of his right knee today, but it was unceremoniously cancelled by the MRI department without telling anyone, so he sat around all morning in a hospital gown with no where to go.
They had cut off his casts to do the MRI so that led to an exam by the orthopedic surgeon and a determination that they will take him to the OR to anesthetize him and maneuver the leg in a better position if they can and if it is locked, they will schedule surgery to correct the problem. The MRI will be scheduled for tomorrow (?????) and we'll take it from there.
He did have physical therapy this afternoon and they had him laying on his stomach which is almost as huge a step as standing. He did very well and was able to stretch is legs down quite well. Although he was tired after that, he remained up in his wheelchair so he could have dinner himself. He sat and read Backpacker magazine. I offered to teach him to knit, but he wasn't buying. After dinner he wanted to remain in his chair, so we gave him the call button, the TV remote, his water cup in his cup holder, and an issue of Italian Cooking and Living magazine (the only other magazine I had) and he was set for a while longer. This was very encouraging since he usually wants to get back to bed after dinner. I kissed him good night and went off to get my own dinner leaving him happy!
February 28, 2008
wedesday 27 february
this is mark. thank you all for your notes and prayers. im doing fine.I'll write again soon .
The above post was put on today by Mark during his recreational therapy session. We thought you would all be as delighted to see it as we were!
Tuesday, February 26, 2008
Another good day. We had a visit from Mark's great aunt and uncle from North Carolina who are vacationing near here. It was wonderful. Our aunt is a retired occupational therapist so she was extremely interested in all the new innovations. We even were able to play air hockey with him for a while.
His physical therapy was quite intense with him standing at a special table for 15 minutes. His new pain medication has been very helpful and he is in so much less pain for longer periods of time. His right knee is still posing a problem and they are going to do tests to determine if it has locked up. If this has happened all the serial casting in the world won't help and it will require surgery. Hopefully, this is not the case, but they are not sure.
To close on a fun note, his nurse was writing up a report and she gave Mark an index card and told him he had to write something positive on it and give it back to her. He took the card and the pen, wrote on the card, and handed it back to her. In his usual smart-ass manner, it said:
"Something positive!"
Monday, February 25, 2008
Hello everyone! We had another good day today, definitely an eight plus. Mark did really well in occupational therapy where he showed me his skill at video games on the computer. These are specialized games geared toward his eye/hand coordination and cognition. He scored in the upper 90s each time and the games got harder as they continued. He also used the "hand" bike with both arms and did well.
Later in the day, he did have his legs recast. He was uncomfortable and tense while they were doing it but was quite comfortable after they were done. His left leg has had good improvement since they gained ten degrees but his right which is by far the most painful, only gained a few. They have changed and increased muscle relaxers to see if they can remedy the situation, but there is some concern that the knee may be "locked" and might need surgery in order for it to progress. We will just have to wait and see. Hopefully, it will work itself out. Meanwhile the therapies continue.
Just so everyone knows, Mark really enjoys the mail. It is fun for him and he now can open all the envelopes himself and read the cards and letters. Our thanks to you all.
Sunday, February 24, 2008
Today was a good day for Mark. We were able to go outside for a while and walk around the grounds of the hospital. It stopped raining and although it was a little humid, it began to clear up nicely. The new photo was taken as we were outside. Mark was very cooperative in having me take his picture. To all the Red Hackle pipers: Please notice Mark's shirt. He absolutely loves it!
We were able to get those milkshakes and even got a few to share with the nurses and a couple of patients. He enjoyed his tremendously. When I asked him if he remembered that I told him I would get him one today, he said: "No, but I'm glad you did!"
By the end of the day, he was definitely tired and it showed with added pain and agitation. The same thing happened last night, but that's to be expected. Hopefully, we will space things a little more evenly to accommodate his stamina which is low. Even so he did enjoy his day and so did I.
P.S. They're baaaaack -- construction crew that is!
Saturday, February 23, 2008
Today was certainly a far cry over last Saturday. I returned yesterday and Mark was doing so much better. He had his cast removed and was getting ready to stand at the side of his bed with the three physical therapists. He was glad to see me. He had been sitting upright for about 20 minutes (with help) and they would stand him up for short periods of time. This is very difficult for him to do. His knees are not completely straight when they do this and he has to try to push off on his feet. Not easy, but he did it.
His pain has been under much better control. They switched him off long acting morphine, which had not been working very well at all to a Fentanyl patch. This is working remarkably well. It is for chronic, severe pain and is quite potent. However, it has not made him sleepy and sedation is a sign that the medication is too strong. Since this has not happened, it appears that he needed something different. I worry about the addiction aspect of these drugs, but the doctors assure me that although it could be a problem for someone with a prior addiction to drugs or alcohol, with Mark's background and his current chronic pain, it should not be an issue. It has also eliminated the need for any breakthrough medication so far. He needs to be able to tolerate the therapy in order for him progress and this looks like it might be the answer.
Today he was able to be up in a chair for a long period of time without being tired or agitated since he wasn't in pain. He was able to play with Nintendo for a while and chat with some of the other patients, which was good for him to do. Prior to this, he was so uncomfortable, that it wasn't possible.
We are anxious to go outside and enjoy the warm weather, but today it rained in the sunshine state. Tomorrow is supposed to be better, so we are planning an outside tour and a milkshake.
Tuesday, February 19, 2008
Mark called us today, with the assistance of his nurse, and even left a voice mail message. He said he was sore but feeling okay. I had to save the voice mail since it's so cute. We didn't realize he had left a message until late this evening. We had a problem with a phone and missed the call, so I called him back and Rich and I chatted with him. Finding the voice mail was a nice surprise.
They did do the casting today and it went well. His psychologist called this afternoon to say he was 180 degrees from where he was on the stress level during last week's casting, when we couldn't get him to relax and calm down. She said everything today went very smoothly. I hope it will continue and have high hopes because he tolerated the braces well all weekend. He never tried to adjust them or take them off at all, which he had done in the past. They feel the changes in the muscle relaxers is probably working. At least I hope so.
Frankly, I think the prayers are working and ask that you continue. Thank you all.
Sunday, February 17, 2008
Keeping in touch by phone the last two days has been hard. I know Mark is in good hands but I constantly worry about him. He had a very rough day on Saturday, with very severe pain and agitation because of it. The pain medication did not seem to work well (and it is very heavy) and his heart rate jumped very high again. He was very frustrated and told the doctor he was done, wanted to stop the therapies, etc. Obviously, this is not an option.
Because of the rapid heart rate and the extreme pain, the doctor had the PT department cut off the casts early and replace them with the braces. After just two days, his legs were much straighter than anyone imagined and that was a good sign. He was more comfortable after the removal of the casts, but they do want to try again on Tuesday to do the next ones. When we spoke to Mark and his nurse this morning, he was still uncomfortable, but it was tolerable and he was in a better frame of mind.
As hard as it is to see him in such awful pain, it needs to be done. I keep telling myself it will only last another couple of weeks, at best and after that he will be on the way to walking again. It is the only option, there is no other. We will not allow him to curl himself into a fetal position (which is comfortable) and stay there. He would spend the rest of his life in bed in a nursing home and that is totally unacceptable. I think, in reality, he knows this, but when you are in constant pain it is hard to be reasonable. Imagine having a charley horse in your hamstrings, quadriceps, and calves all at the same time, constantly, and not being able to move your leg. Then at the same time, the ligments attaching your knees to these muscles are being stretched. Then add physical therapy to the mix. That's basically what he is going through on each leg. I have not been specific before about what is happening, but you can probably realize his frustration at this point.
Mark has never been a complainer about any ailment in the past. His motto was always "suck it up and drive on" but it's a little hard to do under the circumstances. Therefore, please keep him in your prayers for relief from some of this pain so that he can endure and "drive on".
Thursday, February 14, 2008
Happy Valentine's Day!
It was a hard day for Mark and he was still in quite a bit of pain. Then he had his legs recasted again. They are on permanently for the next several days and will be taken off and redone on Tuesday, then again next Friday, and probably again on the following Tuesday. It takes quite a bit longer for the legs than it did for the arm. He was not happy about it but does understand why it needs to be done although he then tries to put himself into a curled position. He fights the casts and that only makes things worse. They are still trying to get the pain medication just right, so hopefully, between that and the medication for the spasticity, he will settle down and be more comfortable soon.
Since I won't be here for a few days, it made me even sadder to see him so uncomfortable. I know he is in good hands and that this has to be done or he will spend his life in a nursing home which no one wants. He has to go through this to be able to walk again. Please pray for the pain to be gone so he can continue with the therapy. It is the most important thing right now. His mind is functioning very well and his shortcomings, like short-term memory and attention, are improving every day. However, they, too, suffer when he is in pain. Again I am asking for your help.
Thank you with all my heart.
Wednesday, February 13, 2008
Well, today was better up to a point. The pain doctor came in and re-evaluated Mark's pain and the medications and made some significant changes. He did all of this after a lengthy discussion with me and his primary nurse. Mark was considerably more comfortable after the changes. His physical therapy was also limited to range of motion exercises because of the incident yesterday with such a jump in his heart rate.
He had a quiet afternoon despite the rain and thunder outside. A cold front came through and the temperature here has dropped significantly. (Apologies to all you northerners but it's about 55 right now.) The cool air will be nice since the air conditioning system at the hospital is being shut down this weekend for upgrading so they added individual units into the rooms. The thing looks like R2D2's ugly stepsister, but fortunately it is quiet.
Then after dinner all hell broke loose. Mark had been comfortable through dinner and we were watching a movie when he suddenly started yelling in pain, sweating and agitated. He kept telling us to remove his casts, so we did and both his knees were swollen and bright red. Jose and I looked at each other in horror. He couldn't even stand us touching them. His nurse, Marcia, Jose, and I assumed he was having an allergic reaction to the topical pain cream they started using last night. The doctor came in and confirmed it, and after a shot of morphine, slathering his knees and legs with lotion, and washing it off, it finally started to subside. Then the doctor ordered a lydocaine jelly to help speed up the process. The poor kid was beside himself and we all felt terrible at the amount of pain and anguish he was going through. After about an hour and a half he finally fell asleep. It was awful. He just kept saying he wanted to go home and have this all done with.
On a better note, he enjoyed a package of letters and poems from a friend's first grade class, and a signed poster from another's sixth grade class, which we hung in his room. He really enjoys the cards and notes a lot. Thanks to all who have been sending them along. They really help.
Tuesday, February 12, 2008
Today was another rough day for Mark. He was in a great amount of pain, probably due in part to the therapy yesterday. His legs are still very stiff and the muscles contracted. The doctor explained that it is like have a constant "charleyhorse" in the thigh and calf at the same time. They are increasing the muscle relaxants and hopefully, start the recasting tomorrow. Of course, with the new cast the pain will probably continue for a while. We are anticipating that the medication changes will help. We need to think positively.
He does enjoy getting the cards and letters and looks forward to the mail. He has been eating well and doing it himself as long as he is in the wheelchair. He has been gaining weight which is good. He dropped to about 135 pounds but is now up to 143. He had been about 160, but according to him, he needed to "lose a few". I'm not sure where, he was pretty much all muscle.
I thought I would let everyone know that there will be some days when I don't update this blog. I will do it every two or three days some of the time, since the days are becoming more routine. I will be away for a few days and the post will be smaller as well. Just keep checking and you will be kept updated. I cannot tell you how much I appreciate everyone's interest in what Mark and I are doing on a daily basis. It is comforting to know that he has touched so many lives.
Monday, February 11, 2008
I am happy to report there was no construction outside my cousin's house and I slept the entire night like a log!!! It was great. And.... there seems to be no construction here tonight either. So that makes me rather happy, although I am waiting for the other shoe to drop. I figure that they will have to repave what they dug up sooner or later, and I am afraid that will come with the smell of asphalt as well as the noise. I guess that's a glass half empty concept, but I do keep trying to be more optimistic.
Speaking of great optimism... Mark did wonderfully today. He was up in his wheelchair for several hours, and did not have a lot of pain. He even refused some of the pain medication which was great. He had PT in his room today, and was doing sitting exercises on the side of the bed. Then they put his shoes on and made him stand! There was a PT on either side and one behind him actually standing on the bed. They made him push up with their help and he stood for a few seconds with all of them holding onto him. He did this about four or five times. It was great. After that, he didn't refuse the pain shot. Afterward, the nurses all came in, one at a time, and congratulated him and there were rounds of high fives. Then the evening nurses came in to congratulate him as well. Everyone here puts so much into each of these patients, they are so proud and excited over all these accomplishments.
He was able to visit with his friend Steve again for several hours. Mark wasn't too tired or in pain and the visit was good for him. Steve said it was hard to hear Mark talk in a monotone when he was so used to seeing him so much more animated. I have been told it takes quite a while for that to go away, but that it eventually does.
I would love to take this opportunity to thank everyone for the cards and letters that you have been sending. It is remarkable that there are so many of you reading this and taking such an interest in us. Mark gets the most mail in the unit, and he enjoys them so much. We have a great big felt board hanging in his room now and we put the cards up on it with Velcro. He enjoys looking at all the cards hanging there. Again, our heartfelt thanks.
Saturday, February 9, 2008
It was a quiet day today. I got to his room late morning and he was back in bed after having an early lunch. He was a little sleepy and had a long nap.
He was in quite a bit of pain when he woke up and the medication didn't seem to work very well today. He had a visit by two friends from Texas who were in his unit at Ft. Hood. One has just recently moved here and the other came all the way from Kileen to see him. I think he would have enjoyed the visit more had he had the right medication to start with. They will be back tomorrow and the next day. He did enjoy talking about all the people they knew in the 3/4 which will be returning to Iraq in June.
He also spoke to Jess which also would have been better had he been given enough pain medication beforehand. He was finally comfortable when I left him this evening.
Tomorrow there will be no update. They are going to be doing extra construction tomorrow night and next Sunday and I will not be staying here for the night. I will resume on Monday and fill everyone in then.
Friday, February 8, 2008
Today marks three months since Mark's accident. As I have said before, it is hard to believe. It's as if we are living a bad dream. We are so grateful that he is making the progress that he has in such a relatively short time. We have been here a month and there has been great improvement in that period. When you think that his first month he was in a coma and fighting to stay alive for two weeks of that four, and then the week in Germany and the three at Walter Reed, where one was in intensive care, his rehab really only started a month ago. It is again amazing.
He was able to be in his wheelchair for several hours again today. He had his PT and stayed in the chair through dinner, which he did even a better job of feeding himself. He had one of his nurses aides in tears of joy when she saw him eating. She has been off for a couple of days and hadn't seen this progress. She was so happy, she brought him a piece of apple pie for dessert which he thought was terrific!
His pain is still pretty intense, but the pain management has improved. They are giving him more medication in an effort to keep him as comfortable as possible as well as increasing the medication for the spasticity. It is imperative that they get his legs straightened and unfortunately that is a very painful process. After all he's been through, it is awful to watch him be in such agony. I think he realizes that it is necessary for him to deal with this to be able to walk again, and that is very much his goal. He wants to do things for himself and is willing to put up with it to feed himself, etc. He's a tough cookie.
We should have a good weekend and be able to spend some down time as the therapies are relaxed a bit. The weather is great and we should also be able to go outside for a while each day.
Thursday, February 7, 2008
Well, for those of you following the construction saga. . . it continued last night. I had a front row seat to the crew tearing up the street in front of the Fisher House and putting down new pipes. They were at it until 3 a.m. but, fortunately, they did move up the road a bit before then. They do seem to be efficient and rumor has it they will be done tomorrow. Let's hope so. I had thought about buying a case of beer and bribing them to stop at midnight. I did buy earplugs, so it will probably end tonight or tomorrow. But, they are at it as we speak, but I can no longer see them from my window. Oh well, if I don't laugh about it, I'll cry.
Mark had a better day today than yesterday and so did I. I got a little more sleep so I wasn't as cranky and they did manage his pain better. They also got him up twice. Once this morning for OT and lunch, which he fed himself. Then again this afternoon after PT. We were able to go outside, I brought him to see my new room, and then we played Ohio State/Michigan checkers. I was Michigan, but I won! He won a game of Crazy 8s with the Rec Therapist, who will now be seeing him every day which is great. It will give him something fun to do and keep his mind off his pain we hope. Of course, he did have his primary nurse today and that makes a big difference. She is absolutely wonderful.
The doctor did not know that Mark was not being taken out of bed often enough, so he actually wrote an order so that Mark has to be up twice a day. That means they have to get him up and document it. I think that will help. His second time up, he got sleepy, so we reclined his chair and he took a nap. He was able to stay in the chair for several hours and even fed himself dinner which was such a big step. His legs were more comfortable in the chair as well, and when he finally asked to go back to bed, Jose adjusted the bed so it was "chair like" and he was more comfortable in the casts.
Little steps every day, heading for that giant one!
Wednesday, February 6, 2008
Well, the room move was not entirely successful. The construction crew moved too. I think I might be paranoid, but I do believe they are stalking me. Last night wasn't soooo bad, however, just about an hour or so at 2:30 a.m. when they were literally cleaning up. Scrape, scrape, with the excavator, giant front loader and small Bobcat and they the beep while their doing it!! It seems that just about everywhere in the house, people could hear it, so I guess I just have to grin and bear it.
Mark had a day with quite a bit of pain, but I do think it was because he didn't have his regular nurse and it wasn't controlled as well. I did start to complain a little bit, just so things are done with certain nurses where I knew the consistancy of care would be there. It is frustrating. Everyone tells me I have to take care of myself and take a break, but if I'm not there when the nurses usually assigned to him are not there, things don't get handled the way they should. It doesn't do me any good to take a break if I have to worry about what's going on back at the hospital. Add that to little sleep and it makes for a cranky person.
He had his casts removed today. However, instead of putting new casts on, they bi-valved them into splints. His PT is going on vacation until next Wednesday. She did not want to put on new casts and have them be on without someone checking every day. By doing this, we can keep them on and the nurses can remove them and check his skin, etc. He can also have breaks from them for about an hour at a time. Next Wednesday they will put the second set on and continue from there. Just after a few days, his legs did extend another five degrees which was good.
I am certainly hoping tonight and tomorrow improve for both of us.
Tuesday, February 5, 2008
Well, the pain was less this morning and much better by this afternoon. He was able to get through his therapies just fine, with a little added help of more morphine, but not much. All the doctors are happy to have him in casts and believe the next set and the ones after that will be much less painful. He did have a rough night, however. Everyone was so worried about him that the physical therapist even called the nurse twice in the middle of the night because she couldn't sleep.
Speaking of sleep, I am looking forward to a good night's sleep myself. I asked for a room change because they are doing construction here. There is an access road here on the grounds that is very busy during the day and they close it at night to lay pipes, etc. They use heavy construction equipment from 7 p.m. to 3 a.m. every night except Saturday. My old room overlooked this road and I was awake a lot. Sunday night was the worst and I only had three hours sleep. On top of the construction noise, the trucks, etc. beep when they back up!! Awful! Last night we think they turned the beepers off because it was better, but they moved my room to another one a little further away. Hopefully, it will be better.
Mark had some Cleveland visitors today. One of the pipe band members and his wife came to see him. They are visiting family here in Tampa. Mark was delighted to see them. They brought him CDs, t-shirts and an electronic practice chanter. He is moving his left arm so much better, that we hope he will be able to play it soon. Everyone was surprised to learn Mark was a bagpiper! He promise the doctors he would play for them before he leaves!
Monday, February 4, 2008
Well, there was no blog yesterday because Mark and I were busy with a wild Super Bowl party. We celebrated with a burger, chili mac for Mark, and a couple of chocolate shakes. Are we the wild ones or what??!!
Actually, we had a quiet day and Mark had a long nap in the afternoon before the game. I ran out and got us some "goodies" and we watched the Giants win. Unfortunately today, he couldn't remember who had won. I think he was just placating me by rooting for the Giants.
Today, was very un-quiet. Actually, it screamed and roared. He had speech therapy and did very well with his "lessons" and then they came to cast his legs. They decided, along with Mark and my approval, to do both legs. The casts will come off on Thursday, and the second set put on. He was in a great deal of pain and had to be given additional medication to get through the day. He was in a lot of pain yesterday with the braces because he continues to pull up his knees. The pain should be less in the coming days as the casts stretch the muscles. It is hard to see him in so much discomfort, but he knows if he wants to walk again, it is a necessity.
Hopefully, he will relax his impluse to pull up his legs, and the casts will be more comfortable. He will have his regular PT tomorrow. We are hoping that the pain will be worth it. They assure us it will. Seeing how uncomfortable the braces were, it is our best hope. We have witnessed first hand (pardon the pun) how well his arm and hand are since that casting. He is actually moving his arm and starting to reach for things with his hand. Therapy will increase that.
Today was only about as good as the date (a four) but tomorrow were looking for the date as well.
Saturday, February 2, 2008
The weather was warm and sunny today which we agreed was perfect for outside. Mark did sitting up exercises with PT today in his room. So after lunch and a nap he had visitors and we went outside.
My cousin Irene and her daughter Alison spent part of the afternoon with us outside. Alison brought Mark a huge milkshake which he enjoyed tremendously. Irene brought him some more chocolates and he had one with his dinner dessert. My contribution for the day was pasta Alfredo, which he ate up at record speed.
He spoke on the phone with Rich, his Uncle Rob and, of course, Jessica. Other than that, it was a quiet day that I think he enjoyed.
Friday, February 1, 2008
Despite the fact that Mark had a bad night due to a lot of pain, today was another good day. Not exactly a 9+, but more like a 7. His knees were very sore from the PT which is to be expected. He was a little cranky about doing more today. I bribed him with a lunch of lasagna and meatballs and dessert of tiramisu, which were leftover from a dinner we had a Fisher House last night. He thoroughly enjoyed it all. He had already had his speech therapy, a shower, and a nap before lunch, so off we went.
We received the results of his bone scans and X-rays. The bone scans showed the beginning of some hyper ossification in his shoulders and knees. This happens with a brain injury and is an excess growth of bone and calcium similar to arthritis. They are going to give him a medication for the next three months to help prevent it from increasing. The X-rays showed that his pelvis has healed so they can begin weight bearing exercises. His back is healing as well, but he will have to continue wearing the back brace for the next two to four months. There are still one or two thoracic vertebrae that are not completely healed and they do not want anything to jeopordize the nerves. He isn't happy about that, but he'll deal with it, because he has to.
The other development is that they have decided to serial cast his legs. The doctor in charge of the program is much more in favor of that than the braces. He believes that they will get results faster and with very little pain. Seeing the results that were achieved with his arm, I am also convinced that this would be better. He will still get the same physical therapy even with the cast since they do not cast the foot. This will also allow the sore on his heel to heal. They will start the first leg (his left) on Monday.
Since they were cleared for weight bearing, he was able to be put on a tilt table today. This one was quite a bit different than the one that was used at Walter Reed. He was able to put weight on his legs even though they were bent at the knees. He did very well. At the same time, they put electrodes on his left arm and they stimulated it to open and close his hand. He did make some remark about being the six million dollar man. It gave him "pins and needles" in his fingers but it worked well.
After all of this, he was ready for reading, a short nap and dinner. Then he just finally fell asleep. A full day without a doubt.