Kyle's new diagnosis

We talked to Dr Risma from Cincinnati Childrens Hospital Immunology yesterday. We have been waiting for the results of a work up we started earlier this month. She called and said that Kyle has an immunodeficiency and possibly an immunedysfunction. She said we need further testing before we can decide the treatment. I recognized a few numbers and letters and know she was speaking english the whole time but I'm not sure what all she said. I finally asked if he needs a bone marrow transplant and the doctor said no, because it wouldn't help him. Alan did understand though and he is trying to tell me. He said basically the generals of Kyles immune system are dangerously low. That causes the rest of the immune army to run amuck. It's far more complicated than that, but thats all i know for now. As far as intervention for now, we just have to be vigilant about washing hands all the time. Anyone coming in to our home, anyone touching Kyle or any of the rest of us have to wash first and Kyle needs to limit exposure to large groups and avoid places with known illnesses.

We have to get the infection in kyles abdomen resolved before we can do further testing and workup. So, step one - go to another new doctor tomorrow. Step two - wait. Step three- go back to Ohio. Dr Risma said his food allergies/intolerances are related to the immunedeficiency and dysfunction but the how is still not clear. So he needs to be followed at a tertiary care center with expertise in immnology and GI and colorectal. There are only 5 spots in the country we could go. This work up will likely take most of a year, so no changes till then.

From a personal side, Kyle is still Kyle and nothing looks different on him from yesterday to today, but knowing that there is a hidden problem like this is a heavy blow. It requires grieving again. Sigh.

As for how Kyle is feeling. He feels poorly and has low energy. His bottom is bleeding and his body has a petechial rash all over. He is really patient though and is content to play his ipad, watch tv or just be held. He is such a sweetie.

So, thats all the news for now.

Spring