Cardiac roller coaster

[aspinwing]

Since posting the reason for Mrs A and I not attending the Heli-Expo bash, I thought that I would continue with the saga in this forum largely because some HEMS folk might find it interesting.
After having a tachycardia incident during an exercise test two weeks ago, Charles was admitted to Sick Children’s’ Hospital in Toronto last Tuesday to begin a series of tests to determine the feasibility of a heart transplant.
On Wednesday morning, he had an AICD implanted – the D is defribulator – which is a combination pace maker and defribulator.
He tolerated the operation well and was essentially ‘out of it’ for the afternoon and slept a lot although the staff tried to fill him with information
One can have a plain pacemaker but the defribulator has a pacemaker included. It is a brilliant device the will shock his heart if it develops a specific arrhythmia. About 1 ½ inches square by ½ inch deep, it is quit a bit bigger than a pacemaker as it has a larger battery that is used to charge the capacitor which will shock him when needed. It can be read and programmed from outside his chest.
He has been diagnosed with restrictive cardiomyopathy, which means that the lower part of his heart is enlarged to the point that the chambers are much too small and not enough blood can be pumped.
He presented adverse signs three years ago and has been tracked carefully since. As I understand it, he is the seventeenth case to appear in medical literature worldwide. There has obviously many more, just not reported. When you hear of a young athlete dying for no apparent reason, especially after exercise / sports, something similar is probably the culprit but the young person was unaware of the condition. Charles’ is the rarest version. We are just grateful that his symptoms appeared when they did and were investigated rather than ignored or misdiagnosed.
He is now in the pool waiting for a suitable heart to become available. As a type O he can only receive a type O transplant. This could be good or bad from a wait time which could be from tomorrow to twelve or as long as twenty-four months. Fortunately, apart from the heart issue, he is fit and in generally good health.
He is at home and sleeping :hmm: teenagers ?? but allowed to return to school next week if he is feeling up for it. Monday has already been declined.
I have kept this fairly general but if any of you medical types are interested in more detail then let me know. I will continue to post any significant updates.
Finally thanks again to those who responded so kindly to the original bash post directly and via pm's . :D
I trust that the mod will allow this to continue on Rotorheads given the HEMS connection. If you think that it should be moved please do so.

[aspinwing]

Well, it has been a wild ride – week !!!!!:ok:

After Charles was added to the transplant list in March 2007, we started the long wait – then estimated at a year to eighteen months – right on the money.

On 2 April, He was admitted to the hospital with seriously deteriorating vital signs and a viral infection. They quickly him sorted with diet and meds and then we moved into hotel mode. His room became a typical teenaged boy’s: guitar poster (hospital supplied), guitar, guitar stand, laptop, ipod, and mobile phone. His thumbs will take on most people at text messaging. The downside was that his school sent in work and the hospital supplied a teacher and a mathematics tutor. He even used the hospital’s recording equipment to record his music class assignments and the sent the recording to his school for evaluation.

During the last year, Mrs A and I have travelled extensively, hoping, with his concurrence, that Murphy would do his worst / best. Not to happen.
Last Wednesday we had supper with him on our way to the opera. He was in great spirits and we even joked that the latest optimal date would be 10 June, as the expected hospital stay of 17 days would take him past the end of school.

In the lobby, ten minutes to curtain, his ring tone goes off in my pocket. I initially thought that I had forgotten something at the hospital or that he wanted me to bring in something the next day. “Dad, there is some one on life support that is a match and we will know in a couple of hours if I can have the heart.” (He is type O- , which puts him in only seven percent of the Canadian population) OK, I said, I will call you at the interval. (I knew that there was mobile reception in the hall.)

Called at the interval and it is, “Dad, I have to be ready for surgery by midnight.” We did not stay for the second act.

Mrs A and I had been from the Southern Cone of South America to Russia in the last year and where the f:mad: was Murphy? We were five blocks away when the call came. We live 83 kilometres from the hospital.

It turned out to be a very long night. Midnight became 01:00 etc. He left his room at 05:00 and entered the operating room at 07:00. His new heart arrived in the OR at 06:35.

Eight hours after he started, the surgeon came out to tell us that what he had done was successful and the new heart was beating strongly. Charles would be in the OR for another two hours while thy tried to control his bleeding (normal) and stitch him up. There were eighteen staff required at various stages of his operation.:D

Thursday night. What a wonderful sight in the Critical Care Unit: tape across his face holding in his breathing tube; IV poles holding eleven IV lines feeding four IV tubes. Three CRT monitors measuring just about everything in brilliant technicolour; but only one mattered, the orange one booming out a beautiful, perfect heart beat.

I must confess: then 198 cm and 108 kilos finally cried. :O :ok:

His progression has exceeded the staff expectations. In the last five days he has gone from having all of this ‘stuff’ doing its thing to having everything save an IV tube removed and sitting, walking, and succeeding in his bodily functions. IVs, gone; breathing tube, gone; chest (blood) drainage tubes, gone; implanted defribulator electrodes, gone. He is still feeling pretty bloody awful but that should be expected six days post-op.

If all continues to go well he will be released from the hospital on Saturday – nine days post-op, close to a record. He was pretty determined to be out in the shortest time possible and it looks as if he might make it.:D

[mini]

Wow.

Best wishes to you all. Its always nice to hear a good news story.

:ok:

[aspinwing]

Going home on day nine post-op may be a record. He is one determined young man.

UK in Sep is certainly part of the plan.

Thanks for all of your and M's kind thoughts.

Cheers

D

[13snoopy]

God bless your son and you and your family.
You are all in my prayers tonight.

[Gordy]

Wish you all best wishes.

[Overdrive]

I wish him and you well. I watched my brother through four months of hospital horror including eight weeks IC after the hospital "gave" him a very rare type of infection during a tiny op. He didn't need a transplant, but did need a new aortic valve after infection damage, and lost some toes.

He was an enormous 38-year-old, and is now an enormous (again) 40-year-old, having regained the lost six stones. Once he was out of hospital, eating well and moving around, interacting, the improvement was remarkable, both physically & mentally. He seemed better almost by the hour, and I'm sure you'll enjoy seeing this happen with your son... best of luck :ok:

[Pofman]

Aspinwing,
Really great news and a huge relief for you and Mrs A. Hope the recovery goes seemlessly and hope you will make it down this way where a bed always awaits.