9 months after muscle removal

9 months after what seemed like the most difficult time of our lives, after straightening the wrist as J had Volkmann Contracture and removing the dead muscle from her arm and making a skin flap from skin and fat taken from her leg.

J has now finished college and resat her GCSE maths as she missed her year 11 GCSE exams due to pain and time in hospital.

She went swimming last week and is so resilient and brave and wore her swimwear with confidence. She makes me feel so proud with her positive outlook.

She will be starting her A levels in September and wants to get into Nursing.  She starts voluntary placement this week and things seem to be going well for her.

She is doing an outdoor adventure month, next month where she will face many challenges but she shows perseverance and resilience and she can do whatever she sets her mind on.

Thank you for supporting her journey.

Much Love

 

8 months on….

Since skin flap surgery Sept 2016 J’s scars are healing well and her wrist is holding itself well after surgery for Volkmann Contracture.

J is doing really well emotionally and enjoying being a care free teen enjoying time with her friends and doing well at college.

J is waiting for an appointment to see the Pain Clinic to reduce and slowly come off the cocktail of meds that she is on.

Being a good year with no injuries or operations this year 🙂

Swan Neck

J went to physio and she has got her wrist to the best it can be.

She has a swan neck finger because the fingers don’t bend to exercise to counter react. She has to wear a special ‘ring’ to stop her fingers hyper extending.

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The skin flap is healing nicely. J has been offered liposuction if she wishes but she does not want this in the near future.

J is back enjoying life and back dancing and meeting up with friends.

She still wants to do Nursing but that is 2 years away and she is adapting all the time.

She has the option of further surgery in the future if she wants a muscle transplant which is a very tricky procedure as tendons etc have to be grown and a muscle taken from elsewhere and attached.

This would give J some fine motor movement, which she does not have and will not get without the replacement of a muscle.However new technology is always happening and I seen something exciting if it becomes a reality and gives hope.

http://atlasofthefuture.org/project/exo-glove-poly/

 

 

Can do… Will do

J has been wearing the splint for bed ONLY, and doing daily exercises to strengthen her wrist and fingers. Able to use the thumb to hold things but can’t hold much weight.

J is over half way through her college course. Such an achievement as she’s been going to weekly physio, daily at one point and in cast from Sept-Feb.

She intends to do either A levels in Sept or a Health and Social vocational qualification. She wants to go to Uni to be a Nurse, working with Children.  She will need to pass a health test with OT to get a place on the course but its all little steps and she has amazed and surprised everyone who knows her with her positive mental attitude, resilience and determination. That’s how she has got through all the operations she’s had in the past 15 month.

Still stretching and keeping active!

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#warrior #resilience #determination

 

 

Plan

*Plan from hospital* for this week Splint on an hour, off an hour on all night for bed.

Putting the onus on J to control her wrist by not letting it drop.

 

Monday a fabric splint with a metal bar, on an hour, off an hour, all day, plastic splint on all night for bed.

 

Tues, fabric splint on 1 hour, off 2 hours, plastic splint on all night for bed.

 

Today, no splint, back to hospital and the physiotherapist is very pleased with her progress! She said that’s what she hoped for which is great!!!!…but the reality has set in of how much she can actually do now she’s reached her ceiling.

J can extend her fingers to reach up, into table top position and slightly curl. The hope is that she will be able to use her fingers to hook objects, function wise but the finger muscles are so weak and not doing much. At the moment she can bend her thumb and use that to hold objects.

J now only has to wear the splint for bed as she can hold the position well herself.

Kinda bittersweet as we were always hoping for a miracle because of her determination and resilience but the reality is that the muscle has been removed so a miracle can never happen no matter how much we believe and want it.

J is now questioning her future career as she wanted to be a Nurse but the small hand muscles will never be strong enough to carry out the majority of Nursing jobs, which are 2 handed; making beds, lifting/carrying patients, measuring medicines, CPR etc.

Next steps is to speak to a career advisor, speak to University to see if she meets the criteria so she knows whether to do Health and Social, Science A levels this year.

I am so proud of J with all she has been through and nothing will keep this warrior down!

Splinting

Had a very frustrating 2 weeks. J needed to get finally get the cast off, which has been on since her skin flap surgery in September.

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She tried a few weeks back but after she had a bath she could not get the splint back on and said the wrist felt stuck. Took her back 2 days later and she had to be re cast to get the wrist back in a good position as it had dropped and got tight.

She was adamant that she was NOT going to wear a splint as she detests them and was told to have 2 weeks to think and come back with a decision.

She had to decide to make 1 appointment to remove the cast and have no support in place for her wrist or come back for 5 days daily to have physio, make the wrist more flexible and have a splint made. She would have it removed daily at hospital for physio, then put back on for the rest of the day/night until her next day appointment.

Up until today, J decided that she had enough and wanted the cast off and no splint and it has been a battle of wills, ensuring J sees it from all sides so she could make an informed decision.

Thankfully she agreed to be put in splint!!!! The wrist has been kept in position by the cast but needs regular physio to strengthen the wrist, which she can only do with a splint as she can after this week, do her own wrist exercises at home by removing the splint, then putting it back on to maintain the position.

 

Eventually in time we hope J will be able to support her own wrist and only wear the splint for bed, then eventually not need it at all!

It’s a step in the right direction and I’m feeling positive ❤

 

 

Action Plan

J went to the hospital today to make a plan of action regarding supporting the wrist. The physiotherapist wants J to take back control of her wrist and to take ownership. J was given options to help with her plan.

To continue with the wrist in plaster cast ( already been 5 month!), to splint the wrist but to be strict with it, going back to hospital every day (1 week initially) for physio, getting the splint on and off so she can do it on her own when she’s ready or to leave it as it is and deal with the consequences, ensuring the onus and accountability is on J and it’s her decision.

J was very teary and upset today as she does not want to wear a splint. She has a few days to decide what she chooses to do to move forward so the plan can be put in motion.

It is a very frustrating time for J herself as she wants an end to it and it’s equally frustrating for her family as we want the best outcome for her after everything she has gone through…..

J has another cast on for just over a week while she comes to her decision. She chose blue with silver glitter this time 🙂

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J finally got her cast removed, 4 month after her skin flap surgery back in September. She was getting weekly physio and it was removed for physio and a new one put straight back on for the past few weeks.

As you may imagine all she wanted was a relaxing soak without being sat up with her arm dangling out of the bath.

Well that’s just what she did, except when she got out she tried to put the splint on that they made her and she couldn’t get her wrist in! She said it felt stuck! She was in agony and very upset!  Eventually she got it back in but it was best fit, which unfortunately was not supporting her wrist.  Took her back 2 days later as she was refusing and the wrist had already got stiff and contracted again!

Result…back in cast to straighten it as much as,possible again and wait for next steps.

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1 year later

J has decided that after the skin flap surgery in September that it is the end of an era but the hospital want to continue casting/splints for the forseeable because the wrist drops once out of plaster.

We have since found out that the wrist had been dislocated since at least April from looking at xrays. The consultant tried to relocate it in September but its 30 degrees out for better function.

J had physio yesterday, the first time since March as it was too painful so pain is more bearable. She could spread her fingers and slightly move the wrist back and forwards, due to hand muscles.

Physiotherapist spoke of potential next steps for J to keep her options open.

Fusing the wrist or surgery on the wrist. Currently they want to work on strengthening the hand and wrist muscles.

She has to stay in plaster for another 5 weeks, meaning since surgery she will have been in plaster for 16 weeks in total since September.

J had a year of trauma and operations, hoping 2017 is a year of recovery,physio and improvement.

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1 year today…..

1 year today was the beginning of J’s journey living with Compartment syndrome and Volkmann Ischemic Contracture.

From a tiny lump, caused by a routine gymnastics injury.

 

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A bleed was caused in the fascia, which is the layer under the fat.

A simple test would have shown the pressure in the arm and a fasciotomy would have been carried out to release the bleed, which if done at the early stages would have meant there would have been no damage.

As a result waiting 6 weeks for diagnosis, despite hospital stays for elevation and Drs scratching their heads, J suffered the worst outcome and the muscles in her arm died and she lost function.

J was back at hospital yesterday to try and keep the wrist straight by putting it in a cast.  This is due to the wrist not being in the right position, after it had been dislocated. It still is not and tries to maintain the bent position. This is volkmann contracture.

She has to go back in 2 weeks for another cast.She can’t wear a coat or long sleeved tops and it is now November.

 

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