Wednesday, June 19, 2013

I am thrilled!! After further consultation with the surgeon who performed the percutaneous tendon release two weeks ago he has agreed to do further release due to the great success of the first surgery. This time at the tops of my legs in only four weeks time!! I can not express how happy this has made me...and Sam.
I'm still free of the pressure area on the lower right side of my back and no more crushed penis.

Tuesday, June 11, 2013

 (Most pictures taken while Robbie's in his wheelchair as that's his 24/7 location)
Twist very noticeable as is the bruise from the pressure area on the right lower back due to the pressure of being pushed against the back cushion.

Black marker as guide. Hardly any twist. Pressure sore has healed with no bruising presently. Also sores under the right upper thigh have totally healed. Skin all good in tendon release area, butt and back.
By observing the chest and knees from above the twist is also very clear
Considerable change of knee alignment.

Legs parted by straps but not causing as much groin area pain as pre-op which limited the amount and time of strapping. Feet almost level due to post operative strapping holding down his left knee that rises and travels to the left due to shortened Iliofemoral ligament and abductor contracture. 
Now to discuss with orthopaedic surgeons possible partial tendon release of abductor muscles and partial Iliofemoral ligament release to help reduce contracture range that force Robbie's knees toward his chest when horizontal as shown below.
Due to shortened nerves and blood vessels in the Iliofermoral area due to Robbie's legs never having experienced total straightening there has been some concern from a surgeon of the legs dropping and causing more pain as the Femoral nerve and blood vessels are stretched. But since Robbie sits 24/7 the legs will not be dropping. The only time his upper legs would be subject to extension or 'dropping' after any partial tendon or ligament release would be during gentle physiotherapy on the floor or bed. Over a long period of time and appropriate physiotherapy the nerves and blood vessels would stretch to a lesser or greater degree. Robbie's own mobility expectations would not subject him to long periods of unbearable pain that would only make him more tense and have a detrimental effect on his progress forward. He and I are rational about what can and can't be achieved due to any possible anatomical limitations that could be totally or mostly irreversible and that have been caused through 40 years of living with cerebral palsy that was not appropriately addressed as a child.
The partial tendon release performed on the 4th of June helped separate his legs to improve access to his groin area and reduce his penis being crushed. But the problematic Iliofermoral ligaments hinder access to the creases between his torso and top legs and cause incredible pain when strapping his legs down and tilting him back to reach this area for cleaning. The tight top tendons of the abductor muscles naturally make access to his colostomy - that is directly above his right leg - very difficult and contractures have often compromised it by crushing and causing leakage.
Also, the extent of Robbie's osteoarthritis must be clarified in order to conclude how much this is limiting the flexing of his hip joints, if any. Could the problem be solely a very shortened and tight Iliofemoral ligament that has become so tight that even under anaesthesia it's not possible to straighten his hip joints.


Saturday, June 8, 2013

  • Iced water - successful
  • Slow breathing in and out of plastic bag - successful
  • Teaspoon of sugar - successful
  • Acupressure - yet to be tried but optimistic it will work
Though hiccups are generally just inconvenient and of no concern and dissipate after a few minutes for the average abled person for someone with Robbie's particular cerebral palsy they can continue for some considerable time and become down right dangerous.
It was only a few days into caring for my friend that he had an attack of hiccups. I assumed they'd go away after a short time just like most anyone else. But no. They kept on and on for some minutes until he vomited all over himself and started choking having inhaled a small portion and also filling his nasal cavity. I ripped off his tray that's attached to his electric wheelchair all day as the vomit flowed down its sides and all over my hands but I had to get him to lean as far forward as possible and slap his back with cupped hands. This was when I also found out that Robbie needed encouragement or 'reminding' to cough and instruction on precisely how. Initially he just sat there choking, not breathing with apparently no instinct to cough. I yelled at him to cough as I frantically cupped his back and coughed myself to show him what deep, heavy coughing was like. He weakly coughed and I yelled to do it heavier and not to stop like he kept doing.
After his lungs seemed clear again I set about cleaning all the mess up. But he started hiccupping again. He said he'd heard that drinking ice cold water could stop hiccups. This made sense as hiccups is the process of diaphragm spasm. So a shock of ice water just might work. I filled a two litre jug with all the ice cubes we had and cold water and stirred. Then had Robbie drink as quickly as much as he could without taking a breath. All the while hoping he'd not vomit again with such a large volume of fluid intake. But with a sheet at the ready I was prepared as I wrapped it around him and his wheelchair. He gulped down about a litre and I stood back. IT WORKED!!
So from that point on I made sure we had an ample supply of ice cubes and that as soon as he started hiccupping in the future he'd immediately gulp down as much iced water as he could in one hit. The only draw back with this is if the hiccups returned some minutes later his gut was full of water already and it made it incredibly hard for him to go a second round.
So another option was for him to breath into a plastic bag that I held firmly to his mouth and instructed him to take long deep breaths. This was a long procedure but generally worked and I usually used it after the iced water if the hiccups returned to save him trying to consume another large volume of fluid.
Both of these cures were fantastic but fiddly. But better than nothing and having Robbie choke on his vomit. Robbie didn't need to be hiccupping for long to vomit.
Then a couple of years ago while he was in community care one of the Pilipino staff was around when he had a hiccup attack. I asked for a jug of iced water. She said to instead give him a spoonful of sugar. She returned and shovelled it into his mouth. Incredible!! Instant result. I stood there staring; waiting for the hiccups to return but they didn't. We thanked Celia for imparting us with this vital knowledge that seems something so small to the majority of people but for someone like Robbie it is life saving knowledge and a load off my stressed out mind as a carer always on the alert for the next disaster or challenge that is all part and parcel of caring and living with someone with severe cerebral palsy.
Now I've also been investigating acupressure recently for the treatment of hiccups. After all, it can not be guaranteed that sugar will be handy everywhere we go unless we carry some with us. And that does not guarantee in itself that Robbie would be able to eat it as he increasingly suffers from nervous giggling that totally robs him of any ability to swallow. So discovering that a point directly behind the ears in that indentation just above the jaw bone is a fix for hiccups, nausea, morning sickness and travel sickness it will be the next cure to try when he gets the attack of the hiccups. I've read feed back on websites and it seems to work. I'm a strong believer in acupuncture and acupressure so I am sure it will also be successful for Robbie. When I discussed my findings with him I pressed on this area known as Yi Feng and he said he felt a sensation in the diaphragm region.

Thursday, June 6, 2013

Percutaneous adductor tendon release.
Above: Operation site 24 hours after the percutaneous procedure performed on the 4th of June, 2013.
Due for review with orthopaedic surgeon on the 19th of June, 2013 to allow for healing and time for surgeon to consult with a world leading cerebral palsy expert regarding the outcome of the percutaneous tendon release and examination under anaesthesia. Expert or not he or she has not even met Robbie, let alone examined him. Note all those with cerebral palsy present differently so Robbie and I do not know the rational of consulting with a surgeon who has not examined a patient personally.
Groin area only slightly more mobile and accessible. Not that Robbie and I held any high hopes; that was why Robbie originally refused the procedure and sought a second opinion from a world leading orthopaedic surgeon as he knew a partial tendon release in the groin area was not going to make any difference regarding being able to sleep on and sit up in a bed. The procedure was mostly experimental and exploratory and the performing surgeon told Robbie that he was only interested in making his groin area more accessible for hygiene reasons and no other. Robbie had little choice. Without the procedure no other surgeries will be considered.
We wouldn't mind jumping through unnecessary time consuming hoops complements of a public medical machine spinning red tape set up by a handful of controlling doctors if my health was good and Robbie's spine was not fusing from physical inactivity. Excruciating back pain is now the result when he tries to lay flat. Something he or I do not need on top of the already painful contractures he has suffered since the age of 12. Irreversible spinal fusion that will worsen the longer the recommended double amputation just above the knees by a respected world leading orthopaedic surgeon is delayed. A surgeon who thoroughly examined Robbie physically and held a long conversation with Robbie to confirm why - and for how long - he has desired to have the removal of his legs that Robbie knows will allow him to gain mobility and some time out from being confined permanently to his wheelchair. Time to move around with a modified walking frame (even if it means shuffling on his butt); roll around on the floor with his companion dogs. And ultimately - at the age of 40 - see his dream reached of again being able to sleep in a bed.