On the 5th of May this year Harri was admitted to hospital, planned orthopedic surgery to his legs. On admission it was planned he would be in hospital for 5 - 6 days. The surgery was to perform muscle lengthening surgery to his Hamstrings left and right, Achilles left and right, Tib-post left and right and 2 toe flexor tendons in his left foot. This was required as Harri could no longer straighten his legs at the knee, his calf muscle had tightened and pulling his foot down, the post tibular had tightened and was rolling his foot inwards and in his left foot was starting to curl over. All these things make it impossible for Harri to bear weight on his feet.
For those of you who have seen Harri recently, he is now 153cm tall and a good 45kg.
Kim has given up on trying to lift him and we now have a hoist for transfers in the home. It is hoped that following this surgery we will begin some weight bearing exercises and leg stretches. This is essential for Harri to learn to do standing transfers ( moving form 1 seated position to another ), as i will not be able to lift him myself for to much longer ( more because of his length than weight ).
We new before the operation that there were chances that Harri could have a longer recovery period, because his muscle tone fluctuates rather than being fix. Harri could try to move his muscles that have been operated on, even though they were in casts and braces. But casts stop the bending at the joint, they don't stop the impulse to flex the muscle. What really snuck up on us was, what was a rather minor problem prior to surgery, became quite life threatening.
November last year, after investigating a persistent moist cough for 6 months, a bronchoscopy uncovered what they thought was a soft or floppy trachea ( tracheomalacia ). This was not deemed to be a problem for his surgery. 3 days post surgery, and in a lot of discomfort, Harri got distressed and triggered a breathing event referred to as stridor. His oxygen saturations dropped and he needed to be put on an oxygen mask. The event lasted about 10 minutes. This was followed a day later by a similar event.
These events made the doctors re-evaluate his pain management plan and prompted visits from the respiratory specialists, who ordered so tests and a CT scan. While we had known for just over 2 years that Harri has this occasional stridor events, we had until now linked them with seizures not the Tracheomalacia.
The CT scan was to uncover something more sinister. As well as a possible Tacheomalacia, Harri had acquired trachoemalacia. The difference is, the latter is caused by a physical obstruction of the trachea. Harri's spine has a Kyphoid scoliosis ( we knew about ), which the vertebra in the neck are compensating and tilting forward, pushing the trachea forward onto his collar bone at the base of the front part of his neck. To make matters worse the right carotid artery is trapped between the 2 and making the obstruction worse. This explaind why we did not pick up the Tracheomalacia at birth, but did not explain why most of the time he was breathing fine and then all of a sudden gasping for air and turning blue.
Initially they could not answer this question and as Harri appeared to be getting better ( the attacks were not as server and less frequent ), they decided to discharge him 12 days after surgery. We had 2 event filled days at home before we were due back at the hospital for orthopedic day surgery to remove the casts and mould his legs for boots, then replace the casts with lighter weight casts. After Kim bringing up the issues of the previous couple of days and the doctors doing the pre-op assessment, They decided that Harri should not have been sent home and that more investigation was needed as well as setting us up at home to deal with the events more safely.
So over the last 3 weeks in hospital we have started physio ( standing and straight leg stretching ), been seen by a host of specialists, casts have been removed, boots have been made and fitted. We know little more about the attacks, except that it is possible that Harri has a Laryngospasm, and possibly the 3 things together at times endanger his life. It is not in their ability to know if this will get worse or better or stay the way it is. Only time will tell.