Leon home

Last Wednesday, we took Leon home, finally. He had been admitted to hospital for surgery on his talipes (clubfeet) but what was scheduled to take little more than a week, took little less than a month. On the way complications were abound and the whole story got rather complicated, technical and … unpleasant.

The procedure on the talipes (clubfeet) entailed the splitting and lengthening of Leon ’s Achilles tendons and the insertion of a 6 inch (!) pin in his heel. The operation went down smoothly, but complications arose shortly afterwards. To administer Leon ’s coagulant factor (he has severe Haemophilia A) a peripherally inserted central catheter was used, because his veins were too small to access frequently. Unfortunately a nasty streptococcal infection brought about the risk of sepsis and the thing had to be removed promptly. While on antibiotics, Leon ’s immune system started to make antibodies for the ReFacto (Recombinant Factor VIII, a genetically engineered protein that mimics coagulant factor), rendering the treatment useless. To counter this problem he was entered in a immune therapy regime, with triple to quadruple dosages for the next 9 months. With drugs administered every couple of hours, the doctors figured another catheter was needed and he was wheeled back to the OR for surgically implanted Broviac. Without coagulant factor, however, this would have been impossible, which is why the haematologist used the last resort for haemophiliacs: Novoseven, a very rare and forbiddingly expensive coagulant factor (at least 40 times the costs of ReFacto, you’ll never hear me complain about Dutch health insurance costs). It was at that moment that we called in the help of family and friends. Doing the splits between a seriously ill kid in hospital and three teenagers at home was a little bit too much for me. From that moment on we both stayed in the Ronald McDonald guest house and because Leon was recovering rather well, we managed to sneak of the ward with him and get some fresh air. Some two weeks after the first operation on Leon ’s talipes, the enormous pins were extracted (without anaesthetics) and a new cast was added. After that things started to look better by the day until we heard on Monday, that the antibiotics and the Novosecen would be discontinued and we might look forward to an early release on Wednesday.

We are now in training, to learn how to flush and clean the Broviac and to prepare and administer coagulant factor. As we’ve never had the opportunity to explore the other end of the syringe it was something very new to us but after two demonstrations we had our first complete run together today. Next week, we’ll have three more sessions, supervised by the haemophilia nurse, because absolute precision and sterility are required. We already received a huge box with medical supplies from the local pharmacy and next week Friday we’ll be heading home with a duffel bag filled with coagulant factor. It will be the start of a new routine with a most cheerful, ever-smiling and effervescent little boy that hopefully doesn’t realise yet how terrifying the past few weeks have been to his parents.

Claudia & Sicko