End of the Week

Today has been an absolute whirlwind of medical events from 8 AM until this very minute at 6:00 PM.

Spen is back home and his cough is settling down. We were finally able to run a bioenergetic screen with him today and there are some core physical issues that absolutely mirror Coleman's - just on a much smaller scale. His immune system seems compromised at the very least and there are spatial orientation issues that would explain his inability to draw or write. His other core issue is his large intestine and a bad stomach. It has always been clear to me watching from a front row seat that both boys were exposed to the very same thing at the very same time (going back to toxic mold exposure) but their bodies handled it in different ways. Coleman also had a TDAP vaccination during the middle of October which may have played a part - there are certainly all kinds of views on that topic. We started a regimen with Spencer today that is designed to target his immune system, lymph nodes and gut. Because he is already feeling better I think if we can get his immune system boosted and keep him away from mold, he'll be on a good road. He still says his lungs feel like "crushed paper bags" when he runs too much. I'm glad we have a path for him.

We also re-assessed Coleman and in one of the most critical areas, his inflammation had decreased about 70%. I truly think that is why he is thinking more clearly and more engaged, even if he doesn't remember a lot of things. The most interesting thing about looking at him again is that with some of the initial off-the-scale elements greatly calmed, there was the ability to more clearly assess things. One issue that recurred in four places was the inhaled yeast Cryptococcus neoformans which most typically affects the nervous system and the lungs. Now, I'm no doc and I know there are several forms of this from pulmonary to meningitis, but there are some specific symptoms that Coleman has had from the beginning that I have yet to see listed on any symptom list like premature feeling of fullness after only a few bites and lower abdominal pain. The one thing that makes the most sense to me is that this long string of physical events absolutely started in the lungs in November - with an inexplicable cough...for both boys.

A wonderful IVNA nurse came here today and one marked area of Coleman's improvement is that he stayed calm - nervous but calm when she came in the room. He was patient while we did the paperwork and she was awesome and allowed him to do everything he could to do all the necessary things that involved touching his skin. He tied the tourniquet, he applied the numbing cream, he removed the tape. I thought for a minute that he was going to insert the needle...not. Yes, it was extremely painful and he started to loose control but focused right back with us and did a great job. It didn't hurt that I gave him a Three Musketeers during the task...he has started to crave sweets again. It's odd, Coleman has always had a high threshold of pain, so it still surprises me to see him recoil in such pain over a tap.

After the nurse left, I was furiously researching Cryptococcus and called our PCP to ask about adding that blood test to our existing list. This illness really needs a spinal tap, but you can test for the antibodies and antigens in the blood. I also emailed the infectious disease doc we have seen as well as the pulmonologist(s) since he and I have had good conversations about fungus and yeast.

We tracked down the codes for this blood test thanks to great PCP nurses, traveling nurses and friend nurses. We will find out Monday if we have ample blood already to do these tests. As fate would have it, one of the tests may have been pulled in the wrong tube so we may have to do a "take two" on that draw and if we do, we could add the Cryptococcus test then. I don't have the heart to tell him we might do another draw yet, so we'll enjoy the weekend for now.

In general Coleman had a good day - just eventful. He loses his humor and regresses a bit when he has a medical task, but today was generally very good.

The IVNA nurse said she is now scheduled to come into the home once a week to assess his condition, etc. We are also going to start some very simple physical therapy so Coleman can learn some things he needs to at least try to do with his legs. I am thinking that getting used to her coming in once a week may help just begin to break down his fear of being with people besides the three of us. He knows his family and loves them, he is just not ready - this is just another symptom and we know he'll beat it.

Today I was reading about King David and how he made his plans to move the Chest of God the fist time and didn't run them past God and botched (word chosen for Wendy) up the moving of the Chest of God - there were consequences and the next time, he laid out his plans before God, they worked perfectly. That's what we're trying to do, talk to God about it, and not botch it up. That chest was all about a place to worship. We have learned to worship in the kitchen, on the couch and in Coleman's bed. I used to think God might be picky about that, I don't anymore. He just wants us as we are, where we are to acknowledge Him.

Jeff just walked in with PF Chang's chicken fried rice - a Coleman staple while on the mend...did I mention he was eating again? Enjoy your weekend!