Thank you very much Dr. Boris, I'm replying late because I was in the hospital due to illness but am better now.
I find it interesting that it's uncommon for the sternal wound to stop healing due to infection rather than rejection.
With EHK we ARE seriously susceptible to multiple skin infections. if your familiar with EB at all (Epidermolysis bullosa) it is kindof similar, we have infections that can literally spread like wildfire in a matter of hours over our skin from a dime to the size of a hand.
EHK affects our skin only. I have multiple piercings myself, as well as tattoo's. the piercings are fine, just a normal risk of infection outside of the skin stuff as anyone else. to to excess skin production 300x normal my body pushed the ink out of the tattoos on my wrist and hip in about 3 to 4 days so that only a faint outline showed initally.
his skin after the sternotomy healed fine even according to his heart doctor a few days after he got out of the hospital and was closed by day 5, no signs of infection or anything. about 3 days or so later we noticed a funny blueness at the incision site and some redness outside of that so took him in and got him on some good antibiotics. we had a 1 month wait after that first appointment, and they couldnt fit us in (I tried calling a few times)
at the hospital the cardiac surgeons and his primary team leader told us (their wording)that his body had rejected the metal closures which was why after the blueness stayed he got so sick w/fever and all. he required ALOT of IVIG and HBO treatments and multiple round of antibiotics to fight all the different infections that he kept getting to help him. They did say that for some reason his sternum didn't have any bone growth and was still only cartilage even at 3 months old. it took a LONG time for it to develop the bone. they also fought to get the good kind of scarring with granulation in the wound so it could close. it took a long time for it to be pink and healthy.
the first night before the wound vac and all he was open they allowed me to (supervised closely of course) help w/ a dressing and he was open enough we could see lungs/heart through his chest.
Dear Martika,
It is uncommon for sternal wound closure to fall apart, Trisomy-21 or not. The most frequent etiology is mediastinitis, or an infection of the mediastinum. The failure of wound healing, though, is not rejection. In fact, since he has EHK, his ability to heal wounds may have been altered, which may also play into this. As well, wound healing is very dependent upon the status of the immune system, which can rarely be abnormal in patients with Trisomy-21. However, if he otherwise has normal immune function, is not susceptible to multiple skin or systemic infections, and is otherwise healthy, this is less likely. I am glad that he was able to finally close his sternotomy by secondary intention.