What does your breakfast table look like?

Anyone out there?

Ok so did I not make the message clear in my last update that we are dealing with scary stuff? I normally get several comments about my posts but this time I only got two. I know I haven't been a good support to you all because what I've been coping with for the last several years has consumed me but I still need your support.
It may be scary and you may not know what to say and feel helpless but silence isn't the right option for me. Many of you have asked what can you do? Don't hide from me. I want to hide from this but I can't. Please stay by me with your e-comments at least. It requires so little effort and commitment. No time at all really. Not like the support I need day to day that looks like meals or help with the kids, dishes, laundry, shopping and cleaning that only a few offer to help with. I'm overwhelmed and now I'm alone too. Please reach out to me.

Spring

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

Night meds, 10 tonight!

Elmo's "owies"

Original work by Kyle. Meaning Elmo has owies like me

Cincinnati trip 4, day 7

Well we are leaving in the morning for Idaho. Kyle is responding well to the iv antibiotics and we will be discharged straight to the airport in the morning. I'm so glad that Louise has been here with me.

It's been a week at the hospital. Literally. The two days Kyle wasn't in the hospital he had clinic visits literally all day long. We have done no sight seeing and very little playing. Thats what happens with two admits in obe week! Poor Kyle has had 4 iv's and one blood draw and one missed stick! And two OR visits. It's been fun.

I have "danced" toe to toe with colorectal surgery, GI, allergy, pain, psychology, infectious disease, and immunology. If anyone needs me to advocate for them speak now before I take a break and sleep for a week! Oh right, I can't I'm going home to soothe the ruffled souls at home who have missed me. Well get in line. I'm taking applications for next week. Then I have to repay myself and recover because as cool and strong as I have been, nothing is free and I'll have to work just as hard to recover as I've had to I order to take Care of Kyle. I sure treasure my little man! I also sure value doctors like Marc Levitt, who is not only amazingly skilled but a patient advocate too! He is the reason things turned out so well.

I understand Kyle on a new level and I have a plan of care in place for each of the above areas and it's going to be quite good for him. I've used my brain alot. I've got a great team assembled. I'm not worried about if his life is in danger after today. There are a lot of things pending and some will be new problems that I have to learn about. They will have to be grieved over. I'm never sure what the future holds but I'm ready to face it.

The team leaders are Marc Levitt, colorectal, Kimberly Risma - immunology, Bill Putnam - GI, Connelly,- infectious disease.

Albonia - allergy and Franchosi - Gi did not make the team.

So I'm hoping that over days and the next few weeks my body will un-tense and I can pay the emotional toll from the week.

Day 8, heading home. Nite nite

Spring

Aunt Wezz and Kyle

Cincinnati Ohio may 2012