Karl's story
8/16/2008 Everything is beginning look really bright for Karl, somethign we'd never had thought a few years ago. He just started 3rd form in school and he's now eating everything by mouth and if he's okay weight- and heart-wise in November when he has his bi-annual check up I think the mic-key button will be pulled!
5/2/2007 Good news from the check up! Karl's heart is better again! His cardiologist was very pleased with what  he saw today.
11/17/2006 Karl had his bi-annual check up today, and unfortunately the news is not too good. The slow decline his surgeon predicted has begun. He is still in good shape though, but the heart isn't as efficient anymore. He's also had some arrythmias which his pacemaker has dampened but he has to have a Holter monitor anyway to rule out atrial flutter. (Holter=24 h ecg)
11/4/2006 School began very well and after some minor hiccups Karl has settled down well. He has a personal assistant at school. He seems to be doing very well heart wise. The eating issue is not at all better, though.
03/21/2006 Karl's heart is still very well! He has been having some flus during the winter but nothing serious enough to even have to take antibiotics. OK in November he had pneumonia and a double sided ear infection; but otherwise no antibiotics needed! We have also had talks with his school. Karl is starting a normal school in the autumn (you start school at 7 here in Finland, Karl is starting one year later because of his learning disabilities) and everything there seems good. The school is taking him and his issues seriously! Karl is still not eating much, his fave foods right now are fried eggs and salami.
10/31/2005 Karl had an appointment with his pc on October 19th. The news were very good, he is heartwise in better shape than ever before!! The only negative issue was his pacemaker. The lead to his ventricle has broken off completely. Now Karl does not need this lead as he suffers from a too slow heart beat and only his atrium needs pacing. But we have to make sure, so he had a Holter (24 hour ECG) and we go back in a month. Karl is also undergoing neurological testing so we can make decisions about his school next year.
The occupational therapy he recieves at his day care is continuing and he has done remarkably well compared to last year!
29/8/2005 Karl has had a wonderful summer with lots of fishing and swimming. He is very well, but the eating bit has not improved and he's still dependent of his G-tube.
5/3/2005
Good news from his appointment with his paediatric cardiologist. His heart is in very good shape! But Karl has grown so much and put on wight since November 2004 that his meds needs to be adjusted. He has mostly been well during the winter, just a couple of nasty bugs with fever, a sore throat and the lot. Karl is not going to go to school in the autumn, although he should according to his age. He has some issues he still needs to improve, like gross and fine motor skills and his ability to concentrate. He gets occupational therpay for these issues.
He still doesn't eat enough so he keeps his g-tube for now.
Karl is also working hard on his swimming lessons to be able to swim in the summer!
12/4/2004
Karl had a TEE (Trans esophagual echo) made in November and the results were excellent. He can stop taking Coumadin (an anti coagulation agent) and we don't have to go back for half a year! That's the longest Karl has not had to see his doctor! He has also gotten new glases, he actually sees his ophtalmologist more often than his cardiologist now!
10/5/2004
Karl's check up in september went well. One of his pacemaker wires had stopped working but luckily he didn't need that particular one as his ventricle doesn't need pacing. He recieved his shots against influenza and polio today.
17/16/2004
Karl has continued doing well, he had an appointment with his cardiologist at the beginning of June, and his heart doesn't seem to have minded the leaking valve yet. So Karl is enjoying the summer at our summer house in Hangö.
4/16/2004
Karl got a good report from his latest appointment with the cardiologist a month ago. The only worrying thing is that his tricuspid valve is leaking profusely again. His doctor wants to wait and see if it is permanent or just something that goes away.
Karl har learned to write his name by hand and he has learned the alphabet as well! He also lost a tooth during easter!
01/13/2004 Karl has now gained more than 4 kilos (approx 8 pounds) since september last year. He looks very  healthy and has lovely chubby cheeks. His heart is still not very strong but he is getting on with the help of many medicines. His energy level is also very good compared to last spring. All the calories he gets through his feeding tube makes him feel better and have more energy for play.
He's now in kindergarten again and enjoying himself immensely as he can keep up with the other kids there.
10/17/2003 Karl is off the transplant list as of October 10th. The G-tube has worked wonders, he has grown 1 cm and gained 2,5 kilos in weight in just six weeks. And best of all, it is good for his heart to have enough calories to work with. Now he has a cold and is throwing up most of his feeds; hopefully he wont loose the weight he has gained! Look at the G-tube on this page
8/28/2003 Karl is doing once again a little better heartwise. But his feeding problems have escalated and he is going to have a tube inserted to his stomach (through his abdomen, it's called a G-tube and later it's going to be replaced with a tube called Mic-Key) to enable us to feed him via this tube.
8/19/2003 Karl is doing slightly better, his appetite is nearly nil though. He is staying at home mostly. And computer games are still his fave thing to do.
7/30/2003 Karl is now home waiting for a new heart. All things considering; he is doing fairly well, playing computer games and quarreling with his siblings ;-D
The waiting can be long or short, nobody knows.
7/5/2003 Karl had to have a pacemaker inserted as his atrium an ventricle were not workning together at all. The very next day the pacer wire to his atrium came loose and he had the surgery done once more!
6/25/2003 Karl had open heart surgery once again on the 23rd of June. Mattila was his surgeon once more. His leaky valve was fixed and also the stenosed fontan-tube, he had a fenestration inserted between the tube and his right atrium. He had a very difficult time coming off bypass, as his heart is so worn out. With the help of an intra aortic balloon pump they succeeded in getting him off bypass after five hours, and he has been in the intensive care unit since then. His chest is left open, he is intubated and sedated. He has had some problems with arrythmias but is stable nevertheless

6/11/2003
Karl is doing badly, his tcpc-tube i partly occluded and his tricuspid valve has blown. So in short Karl has to have surgery once more. He is scheduled for the 23 of June. It is high risk surgery.

2/17/2003
Karl had his open heart surgery today, he now has a fontan circulation and he was pink for the first time in his entire life when I left hin in the intensive care unit tonight. He was mad at everyone beacause he didn't get to drink! He had an unfenestrated fontan, which means he will be pinker, because now all his venous blood goes straight to his lungs for re-oxygenation.
He didn't have any surgery on his tricuspid valve, as the surgeon Ilkka Mattila couldn't find anything he could fix straightforward on it. So he didn't take the risk of stopping Karl's heart and opening it and maybe achieve nothing.

Our third child, Karl, was born with a congential heart defect called hypoplastic left heart syndrome (hlhs) i July 1998. Karl and his family lives in southern Finland.
The heart defect means that his left ventricle is way too small to work properly. Karl has had six open heart surgeries so far to help him live with this condition. The surgeries were done at the Children's clinic of the Helsinki University hospital, his surgeon in the four first surgeries was the talented Markku Kaarne.
His first surgery, the Norwood, was performed on the 9th of July 1998. Everything went smoothly and we got him home only two weeks after his surgery!
Karl's second surgery, the Glenn shunt, was on the 20th of October 1998. His aorta and left pulmonary artery were also enlarged during this surgery.
His third surgery, on the 25th of January 2000, was due to his left pulmonary artery becoming totally occluded and his fourth on the 30 October the same year to close a modified BT-shunt that was inserted during the previous surgery to help his left pulmonary artery grow.
Karl has battled congestive heart failure, high pressures in his lungs  and numerous infections after that. Now his situation is much better though, his pressures are down and his heart is much better.
Look at me now! Chubby cheeks and happy!
Look, a box of BRAND NEW DINOSAURS! I have about 150 of them now!
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