Here I am again, with apologies for the redundancy and wordiness of the last blog. It was partially for my benefit, but also to show those of you who we haven't seen in a while, why we were once again lulled into a false sense of security that all was well and that we would continue to move ahead in a positive direction. So, just a teeny little bit more of history.
In order to get physical and occupational therapy in Florida, some places required a prescription from a Florida state physician. This was also tricky bec. not all facilities offer occupational, as well as physical, and not all orthopedic doctors are willing to write a prescription for both. So we were armed with our scripts from our NY doctors and internet researched names of MDs in Fla. Now, we had just about barely settled into our home away from home and we noticed that the skin around the right hip wound was breaking open in a small spot. This was where Joe had overdone it with the healing and had developed a calcification that was sticking directly out from the femur. It had grown so much that it was now breaking through the skin. We knew what it was, as it was very obvious on his X-Rays, so when we went to the orthopedist to try to get a Fla. state Rx, we pointed it out to him. He took one look at the site and the extent of Joe's injuries and obviously didn't want to get involved and just said to see our orthopedist as soon as we got home (as if we wouldn't). Anyway, things went relatively smoothly from there on. We got our scripts and moved on with therapy. Again, the myofascial release that our therapist Jim began was absolutely invaluable. The first major thing Jim worked on was Joe's chest and around his lungs. Because both lungs were punctured and all of the ribs were broken in multiple places, and because everything just healed as he lay in his hospital bed, his chest was very tight and his lungs had to kind of find a new and different shaped home for themselves. He was never able to take a deep breath - it was all shallow breathing, always leaving him kind of breathless. Once Jim was able to release the myfascia around the area - Voila, deep breaths! So he needed to keep up his deep breathing so it didn't tighten again. As Jim explained it and as I understood it - the inside of the entire body is covered with myofascia - a netting sort of thing - which when presented with trauma and/or long periods of inactivity acts like a wool sweater that has been washed in the washing machine - it shrinks and tightens. Thus, the great importance of loosening it. Joe really benefitted from it and we planned to continue it when we got back north, which we will still do, but as I'll explain, things have gotten in the way of our forward progress.
Now, shortly bef. we left Fla., Joe developed a click in his left pinky, which wouldn't have been bad, except that he also couldn't bend it at all. As soon as we both got back from Fla., we spent a whole week seeing all of his doctors and getting surgeries scheduled. I think Scott updated the blog when Joe had his A1 trigger released. No problem. Out-patient surgery. All went well. Just a minor hold-up in hand therapy until all the stitches were out. Next surgery scheduled was to remove the exostosis (extra bone Joe grew) from the femur. This did require hospitalization, but was only a couple of days and again we anticipated that all would go smoothly. It did seem to. The surgeon said everything went fine, although when he got in there, it was not just a small piece of bone but as he worked at it. it turned out to be "the size of a very large soup bone" (his words, not mine). We did see a couple of old friends (our good friends, the wound VAC nurses), and in a couple of days, we were out of there. Instructions to go back to the orthopedist for stitch removal and X-rays, but as these two surgeries were #14 and #15 (who would want to end up on #13 - very unlucky), we figured we were about done and when Joe recovered from this, we would get back to therapy and moving forward. Little did we know what was in store for us. To be continued later. Love, Cindi
Wednesday, July 30, 2008
Monday, July 28, 2008
DAY 338 - JULY 27, 2008
Dear Loved Ones,Family & Friends - HELLO THERE !! It has been a very long time and I have been very remiss in keeping up with the blog. My apologies. Fortunately, my children have picked up the slack a bit and gotten some blogs on in the past few months. I'm going to have to back up a bit just for my own benefit to familiarize myself once again. So, please bear with me if some of this info is redundant. I haven't been on the blog for months, so it was extremely heartwarming to go back and read all of the wonderful responses that I have missed. Thank you so much, everyone, for your heartfelt good wishes and prayers.
So let me go back a few months, to discharge from Sunnyview. Finally, out of the hospital setting, at least partially. We stayed at The Fisher House during the week and M,W & F went to Albany Memorial for physical therapy and to their Hand Center for therapy on Joe's hands, arms and shoulders. We do have to say that the therapy we got at Albany Memorial was head & shoulders above what we felt we had at Sunnyview. They did have 2 very good therapists there, but after the first couple of days, we never seemed to get them. The one we did have was fair, but at least got the ball rolling, although we had lots of difficulties at Sunnyview, also. Just little things like critical medication forgotten to be given; donor site scraped open with someone's fingernail (that's sanitary) or engagement ring; infection being ignored. As always, we had a Ferraro watch dog on duty 24/7. Bec. Joe was in a private room bec. of the MRSA, we were able to have someone stay with him at night. At this point, it was mostly me, as the children mostly had to get back to their lives, but whenever anyone was able, they would stay overnight. As you can see, Joe made good progress there. The occupational therapists were wonderful problem solvers and very helpful with ways for him to work at gaining some independence. Sometimes Joe would have occupational therapy with 1 or more other patients. He managed to beat Mary (knee replacement) in a trudge competition down the hallway, but tiny little 81-year old Ruth made mincemeat out of him in the plate into dishwasher competition (in Joe's defense, he was a little bit hampered with limited use of his hands and arms) and took the defeat in good stead. And everyone was hampered by the fact that they all wereusing walkers! I think one of the kids went into the problems that developed with the infection recurring in the hip wound and then showing up in the darn big toe. While they were treating that infection (which was gram positive) with a very powerful antibiotic, a gram negative infection developed - acinetobacter. I discovered while researching on the internet that the acinetobacter probably occurred bec. of the use of the epsom salt soaks. It is a bacteria that breeds in water. So what seemed like a good idea at the time(the soaks for the toe), the combination of being treated for a gram positive infection and the soaks probably resulted in the second infection.
We had a lovely, but unconventional, Thanksgiving at Sunnyview and were finally sprung from the hospital on Dec. 3. We still had much work to do with the big toe, but what with visits to the podiatrists, orthopedists and infectious disease people and several weeks of treatment, the infections finally seemed to resolve. Thus began our weekly treks into Albany. We were so lucky to be able to stay at The Fisher House. We would be there from Monday through Friday and then would head home for the weekend. Somehow it seemed that every Sunday night, Monday morning we would have a snow and/or ice storm, take our lives in our hands and strike out for Albany before daylight. We had some scary times and those were just getting Joe from the house to the car and back again, as we were still using the wheelchair, for the most part for much of his travelling bec. he couldn't walk very far and definitely couldn't walk in snow or ice. So I'd be trying to maneuver the wheelchair through snow, ice and slush. Fortunately, all of our children were born in Buffalo, so I've had plenty of practice getting through the stuff. Still, there was a little difference between Joe and a 10 lb. baby. And so it continued. Robb was able to stay with us, which was wonderful. He did snow shovelling and shopping for us, as well as holding things together on the home front. He and Joe's brother, Bill, also did wood chopping and stacking. We had wonderful visits from friends and family, which we relished. After Christmas we were able to bring our dog home. Our very kind and generous friends, the Perry's, had been caring for our dog since the accident. Above and beyond the call. Once we got into January, the plan to possibly get to Florida began to take shape. Friends did some research into places for therapy in Florida. I scoured the internet to research places and our hand therapist, Nancy, gave us her national book of registered hand therapists. By this time we knew what we were looking for because our physical therapist, Mandy, and our hand therapist, Nancy, were top-notch and we wanted nothing less in Florida. We had agreed that if we didn't find what we were looking for, we would not be able to stay bec. at this point the therapy was too important. By this time we had contacted our friends and great landlords in Florida and they were incredibly agreeable to a flexible plan for us. We can't believe how lucky we are!
Beginning of Feb., Robb and Joe flew down to Florida and I followed in the car with all of the special equipment Joe needed and armed with a list of physical and hand therapists to check out. That took us two solid days in the car, but well worth the time, bec. we found the absolute best place for us. It was not too far from us, and the therapists were fantastic. His hand therapist, Kristen, took right over where Nancy had left off and his physical therapists were terrific,as well. His therapist, Jim, who did the intake eval. on him introduced us to myofascial release therapy, which Jim did once or twice a week the whole time we were in Florida and Joe benefitted enormously. So our plan was to certainly continue that when we got back up north. In the meantime, we thoroughly enjoyed our time in Florida. We could not have nicer friends than our friends at Gator Trace, from the ownership and management, right down to our new and old friends. Robb stayed with us for a month before moving to Pittsburgh. We were able to see Scott a couple of times, once with his family. Dana and her children visited with Stacy and then Stacy and her boyfriend, Paul, came and spent some time with us travelling from Colorado and New Orleans to Block Island for the summer. Joe was able to be outside for some walking and one or two times at a little golf. He was thrilled. It was the best thing for him and fabulous for me also. (I see that the autosave has failed on this blog, so I will post bef. I lose it and catch up some more later). Love, Cindi
So let me go back a few months, to discharge from Sunnyview. Finally, out of the hospital setting, at least partially. We stayed at The Fisher House during the week and M,W & F went to Albany Memorial for physical therapy and to their Hand Center for therapy on Joe's hands, arms and shoulders. We do have to say that the therapy we got at Albany Memorial was head & shoulders above what we felt we had at Sunnyview. They did have 2 very good therapists there, but after the first couple of days, we never seemed to get them. The one we did have was fair, but at least got the ball rolling, although we had lots of difficulties at Sunnyview, also. Just little things like critical medication forgotten to be given; donor site scraped open with someone's fingernail (that's sanitary) or engagement ring; infection being ignored. As always, we had a Ferraro watch dog on duty 24/7. Bec. Joe was in a private room bec. of the MRSA, we were able to have someone stay with him at night. At this point, it was mostly me, as the children mostly had to get back to their lives, but whenever anyone was able, they would stay overnight. As you can see, Joe made good progress there. The occupational therapists were wonderful problem solvers and very helpful with ways for him to work at gaining some independence. Sometimes Joe would have occupational therapy with 1 or more other patients. He managed to beat Mary (knee replacement) in a trudge competition down the hallway, but tiny little 81-year old Ruth made mincemeat out of him in the plate into dishwasher competition (in Joe's defense, he was a little bit hampered with limited use of his hands and arms) and took the defeat in good stead. And everyone was hampered by the fact that they all wereusing walkers! I think one of the kids went into the problems that developed with the infection recurring in the hip wound and then showing up in the darn big toe. While they were treating that infection (which was gram positive) with a very powerful antibiotic, a gram negative infection developed - acinetobacter. I discovered while researching on the internet that the acinetobacter probably occurred bec. of the use of the epsom salt soaks. It is a bacteria that breeds in water. So what seemed like a good idea at the time(the soaks for the toe), the combination of being treated for a gram positive infection and the soaks probably resulted in the second infection.
We had a lovely, but unconventional, Thanksgiving at Sunnyview and were finally sprung from the hospital on Dec. 3. We still had much work to do with the big toe, but what with visits to the podiatrists, orthopedists and infectious disease people and several weeks of treatment, the infections finally seemed to resolve. Thus began our weekly treks into Albany. We were so lucky to be able to stay at The Fisher House. We would be there from Monday through Friday and then would head home for the weekend. Somehow it seemed that every Sunday night, Monday morning we would have a snow and/or ice storm, take our lives in our hands and strike out for Albany before daylight. We had some scary times and those were just getting Joe from the house to the car and back again, as we were still using the wheelchair, for the most part for much of his travelling bec. he couldn't walk very far and definitely couldn't walk in snow or ice. So I'd be trying to maneuver the wheelchair through snow, ice and slush. Fortunately, all of our children were born in Buffalo, so I've had plenty of practice getting through the stuff. Still, there was a little difference between Joe and a 10 lb. baby. And so it continued. Robb was able to stay with us, which was wonderful. He did snow shovelling and shopping for us, as well as holding things together on the home front. He and Joe's brother, Bill, also did wood chopping and stacking. We had wonderful visits from friends and family, which we relished. After Christmas we were able to bring our dog home. Our very kind and generous friends, the Perry's, had been caring for our dog since the accident. Above and beyond the call. Once we got into January, the plan to possibly get to Florida began to take shape. Friends did some research into places for therapy in Florida. I scoured the internet to research places and our hand therapist, Nancy, gave us her national book of registered hand therapists. By this time we knew what we were looking for because our physical therapist, Mandy, and our hand therapist, Nancy, were top-notch and we wanted nothing less in Florida. We had agreed that if we didn't find what we were looking for, we would not be able to stay bec. at this point the therapy was too important. By this time we had contacted our friends and great landlords in Florida and they were incredibly agreeable to a flexible plan for us. We can't believe how lucky we are!
Beginning of Feb., Robb and Joe flew down to Florida and I followed in the car with all of the special equipment Joe needed and armed with a list of physical and hand therapists to check out. That took us two solid days in the car, but well worth the time, bec. we found the absolute best place for us. It was not too far from us, and the therapists were fantastic. His hand therapist, Kristen, took right over where Nancy had left off and his physical therapists were terrific,as well. His therapist, Jim, who did the intake eval. on him introduced us to myofascial release therapy, which Jim did once or twice a week the whole time we were in Florida and Joe benefitted enormously. So our plan was to certainly continue that when we got back up north. In the meantime, we thoroughly enjoyed our time in Florida. We could not have nicer friends than our friends at Gator Trace, from the ownership and management, right down to our new and old friends. Robb stayed with us for a month before moving to Pittsburgh. We were able to see Scott a couple of times, once with his family. Dana and her children visited with Stacy and then Stacy and her boyfriend, Paul, came and spent some time with us travelling from Colorado and New Orleans to Block Island for the summer. Joe was able to be outside for some walking and one or two times at a little golf. He was thrilled. It was the best thing for him and fabulous for me also. (I see that the autosave has failed on this blog, so I will post bef. I lose it and catch up some more later). Love, Cindi
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