We just got back from PT at MD Anderson. Even with his pain medicine, PT is extremely painful for him and so is wearing the dynamic leg brace. It kills me to see him go through so much pain.
First walking outside since his latest surgery. Go Robbie!
His doctor wants him laying down a lot the next couple weeks and his leg straight. Dr Lin said the first two weeks are critical for the surgery to work.
I’ve talked Robbie into wearing the killer brace for an hour or two depending on his pain. His leg is already wanting to bend a little again. He will really have to fight the scar tissue and pain to keep his leg from regressing. He is trying hard today, but we have a battle ahead of us to gain a functioning leg. He is tired and understandably wants to baby his painful leg, but I can’t let him do that.
Dr Lin stopped by to see Robbie today. He explained surgery:
During surgery, Dr Linn nicked Robbie’s inner tendons and stretched them. Next they did a 30 minute manipulation of his leg causing some of the scar tissue to break apart inside his leg. This causes a lot of leg pain. They were able to push the leg all the way straight during surgery.
Dr Lin decided not to perform the major scar tissue removing surgery yet, since they were able to get his leg straight during the manipulation. We are all praying that this works and Robbie can stand the pain of the brace and PT.
PT came by two times today and pushed down on his leg trying to keep his leg as straight as possible. It is very painful when they push on his knee. PT also tightened his brace, which ireally hurt him. He will have additional PT the next few weeks. The leg already wants to be a little bent so wearing the brace will be a challenge.
Robbie is resting after having a painful PT session. They are pushing down hard on his leg to try to keep it straight.
Dr Lin just stopped by and explained the surgery the same as he told us yesterday. He made a couple cuts on the inner tendons and then he did a manipulation by pushing his leg straight while breaking up scar tissue. Dr Lin hopes this works to avoid the more risky surgery to remove scar tissue from his prosthetic leg. He will also have more PT sessions.
They have his leg strapped in a brace to keep it as straight as possible. The problem is the scar tissue can reform and keep trying to pull the leg into a bending position again. It is going to take a lot of PT and pain for Robbie to work on keeping his leg straight.
Later: Robbie is awake, had some pain meds, and wearing one of his Velcro chemo shirts.
We bought him a new jumbo sloth. He is well drugged and sleeping tonight. He was finally moved to a room around 6pm. He is on the same floor and wing as December, so the nurses remember him and have been stopping in to see him.
Jim and I just get home. We normally take turns spending the night, but he was sound asleep and we were so tired we came home. We also know the nurses and trust them to call us if needed.
It is so hard to see him after surgery again.
He is out of surgery and in the recovery room. It wasn’t as successful as we had hoped. It looks like scar tissue is the major issue, but the dr didn’t want to open his old incision today. The dr said his leg is straighter and will be in a lot of pain. He did cut the tendons and then they did a manipulation to break up scar tissue. He will be in the hospital a few days. He is still in the recovery room.
Robbie has a knee contracture preventing him from straightening his leg. The picture shows his leg as straight as it currently will allow. His tendons are too short & tight and also due to scar tissue…all from his leg surgery in December. He has had months of physical therapy with very little change in his leg.
Dr Lin plans to do surgery on his leg this week if his schedule is open. He will start with cutting, nicking, and stretching Robbie’s tendons. If that doesn’t help, Dr Lin will need to perform a more invasive and risky procedure to scrap away scar tissue from his prosthetic leg. There is a greater risk for infection and risk for nicking major arteries in his leg. Also a much longer recovery. We are hoping the first procedure works. Dr Lin will decide during surgery if he needs to do both, so we won’t know until after surgery.
Dr Lin hopes to give Robbie’s leg greater range of motion allowing him to eventually walk again. Currently he has little use of his right leg and has limited mobility.
He is also having other complications with his leg. He still doesn’t have feeling in a majority of his right leg and has limited movement of his foot.
Even with all the complications, his doctors are pleased with his leg and said just a few years ago, he would have lost his leg. The type of surgery they used is a more recent procedure to avoid amputation.
He will need to continue physical therapy, but we are hoping to transfer back to Oklahoma sometime in June depending on how he is doing.