PHYSIO AFTER TENDON AND MUSCLE RELEASE
 

Robbie's been home now for four days.

Two days after removing the stitches between his legs that were cutting into his flesh the incisions have nearly healed. So tonight he had his first major physio.

 

We took away the arm supports to allow for Robbie's legs to hang over the edges of the crocheted wheelchair cushion. His feet are heavily padded as they're extremely sensitive and are causing all sorts of problems interfering with positioning and they're sensitive to touch as always. Knees also heavily padded so the straps do not dig in. The orange objects are heat packs. When stretching someone with cerebral palsy it's vital massage areas be warm first. Even abled bodied people should be heated up somewhat before any massage. More so the disabled.

 

 

Heat packs still in place - under the purple top - I gradually begin deep, slow and gentle tissue massage of the tendons and muscles. As seen in the photograph, Robbie's legs can be separated over 90 degrees without too much pain. After the massage the stretch pain level had dropped - on a score out of ten - from a 7 to 3 in his left leg; a 6 to a 2 1/2 in his right leg. Never have someone with CP wreathing in pain!!

 

During separating his legs he was also stretched back - reclined - as far as possible resulting in only mild appropriate stretching pain. This he thought would cause incredible pain but instead actually reduced the pain in the tendons. Surprised me also. Everyone is so different.

 

Robbie had been complaining of a lot of pain in his lower back for the past few days. After this first serious physio, heat packs and massage he says the back pain is barely there. I believe that perhaps Robbie's hips were out of place somewhat and may have been causing sciatic nerve pain. Opening his legs and laying him back may have aligned hips and spine. All good so far. Will do this daily. During physio he may rest for five minutes occasionally when he needs in order to reduce his body suffering too much trauma that will result in contractures and spasm. Length of physio is decided by his body.

 

See the surgeon on six weeks time.

 

Today he's not asked for any pain killers!!!

 

 

Above: Robbie's legs before the percutaneous tendon release performed early June, 2013. Legs crushed his penis causing pressure sores on it. And it was impossible to reach him properly to clean without wrenching his legs apart causing agony and damage to the skin while cleaning.

 

 



RECOVERY DIARY

 

 

Above: Two days after the second tendon release, 18th July.

 

 

Above: Six days after operation. "This is the most painful and uncomfortable stay I've ever had in hospital", Robbie said today. And it looks it.

 

Robbie feels betrayed as there was no tendon release as agreed upon by surgeon of the top legs' tendon or any consideration at all of minor ligament release of the hip joints. Again, reason being fear of causing pain due to short femoral nerves and short blood vessels. Something Robbie was not worried about and repeated this over and over to the surgeon and others. He said he'd risk the pain over more years being confined to his wheelchair and unable to sleep painlessly in a bed. He wants to die so he has nothing to loose. His wishes, as usual, fell on deaf ears.

 

Instead, there was more tendon release of the tendons between his legs that had not been discussed prior, and a lot of muscle cut that controls the lifting and lowering of the upper legs which had been discussed and agreed upon.

 

Right side incision.

Left side incision.

                                     

[Two days ago, 26th of July, I had to remove Robbie's dissolving stitches. They weren't doing much dissolving and were cutting into his skin causing one incision to show the first signs of infection. After they were removed I lanced the infected area until red healthy blood appeared and iced both areas. Today, 28th July, the scars (above images) look great and nearly totally healed and dry. For two days after removing the stitches I've also placed cloth nappies between the creases and on the incisions with no creams or ointment. And again iced the areas.] 

             

              Though Robbie and I are very pleased with the second round of surgery's success regarding a wonderful range of side motion from left to right for each of his legs there is still huge difficulty in cleaning the creases between his gut and thighs. Today, 20th of July, I had a terrible time trying to clean him and the skin is still not able to breath properly. It is a battle to keep the psoriasis at bay with broken skin being a concern with pus filled spots, particularly on the right side under the colostomy site which was our main concern, and the main reason for us to undergo the second round of surgery.

 

Again, he was told he is not going to have an amputation above the knees so he can be mobile.  In fact, he was told it was not important for him to be able to roll over independently. How kind of some in the medical profession. And that such an amputation would ruin his balance. Robbie has over and over again explained he has no balanced anyway and is strapped in his wheelchair both at the top of his knees and at the chest which will remain the same with or without his lower legs.

 

 

 

With the knowledge that a world leading private orthopaedic surgeon - who has interviewed and examined Robbie - is willing and wanting to help but is presently not permitted or able, he feels his life is, as always, being controlled and destroyed by public doctors who just do not want to help him and others like him who have useless limbs that prevent mobility. It is not a matter of can't help but won't help. Non of the reasons put forth by reluctant doctors not to amputate are valid. Robbie meets all the legal criteria for such a recommended amputation. So for Robbie it is more months of unnecessary crippling pain, physio and confinement to his wheelchair; building on an already huge distrust that anyone really cares about his present welfare let alone future. And why should he trust when so many over some number of years now have advised me to place him in a home and forget about him.

 

More to report on Tuesday, 23rd July. Stay tuned.

 

Yes, I know today isn't the 23rd. The above image was taken on the 20th July. And today, the 22nd of July it didn't look much better. Tomorrow I'll have to take up our large ice cube to cool the area; place some soft cloth nappies between the creases like I was doing several months ago. Dry up the plasma and stop the skin touching itself and put the usual Castor oil and zinc cream as a barrier. Robbie naturally can't wait to get home nor can I. Hospital stays are always a nightmare. I've been up to see him everyday to keep him in position correctly; see to his stubborn psoriasis and deal with the colostomy and urodome. Tomorrow is going to be a very busy day.

*************

Yes, 'tomorrow' did prove to be very busy. So much so that I've had no time till tonight, 28th July, to update this post.

 

The redness under Robbie's colostomy is still red but as not as angry. The cloth nappies seem to be helping along with the application of a large ice cube. Pictures taken on the 26th and 28th July.

 

Fortunately, Robbie was well enough to leave hospital on Wednesday 24th July. We'd both had enough. One nurse saying and telling some of the staff that Robbie did not have psoriasis. Another that he did not have understanding problems on her first meeting with him and reducing him to tears. And one thinking I was only cleaning Robbie every second day when I'd been up everyday to clean and dress his wounds and groin area to make sure he was cleaned properly. As the top of his legs are still very difficult to clean without damaging the skin and causing a great deal of pain trying to straighten out his hips just enough to get to the areas needing cleaning it is not fair on anyone to do this. Anyway, no one is willing to inflict the pain on Robbie or risk damaging his skin in order to clean and dry him properly. That has and always will be left to me and neither of us expect anyone else to do it.

 

One of the nurses said Robbie was allergic to the tape I've been using for years to keep the colostomy wafer from coming off and the poo in when they pancaked. So she redoes what I had done the previous day; refusing to put the tape on and leaving out any pads or cloth that stop the creases touching and helps keep the area dry. So four hours later I had to put tape on as the poo was already creeping under the wafer. Remove soggy skin from all the sweating and plasma weeping from the rash. And put pads back to combat access moisture.

 

But now Robbie's home. The nappies are in place. The soggy skin's being kept in check; wounds nearly healed; and the redness under the colostomy is dying down.

 

 

Above: Under colostomy 30-07-2013

Keeping area dry with cloth nappies. Robbie's face has also broken out and is being treated with solution of bi carbonate and responding well. The stress of the past month both due to having had the flu and then the surgery may have triggered the psoriasis. But even without the sickness and trauma Robbie has severe outbreaks of psoriasis that generally respond well to bi carbonate of soda. I may have to dust some powder onto the colostomy area affected as a solution of bicarbonate will not aid in drying out. At least today there was no plasma weeping out.