In the Hospital

We had another truly miserable 9 hrs in an ER holding tank. Got admitted about 1 am. His kidneys and labs are good. We just did a CT of his legs and the wheelchair ride downstairs is indescribably painful for him. He is more motion sick than a new sailor. We are waiting for a consult from neuro and pain and calming meds.

The partial lab work we have received from Dr. Shoemaker includes a marker called MMP9. A normal level is 85 to 335. Coleman's is 1343. Normally children won't show a high MMP9 so for his to be through the roof is a red flag. He also has an unusually low MSH. Together these allow more than 90 percent certainty of toxic illness with Coleman being the probable poster child.

This hospital is not a facility equipped to handle this illness and they have made that clear. Now that we know his organs are good we hope to be at home with pain meds and continue the toxin binding meds until the rest of the labs are in. More than likely there are other specific meds that will allow the binding meds to work more effectively. If this is the case we'll deal with the illness one step at a time...literally.

I am not able to explain the physical and emotional state coleman is in, especially after one more screwed up visit to a hospital. What he feels and the anxiety he tries to manage consistently breaks him. He has experienced pain and loss that no child should have to and perhaps most gripping to me is his loss of innocence and trust. May I say that this child is a hero in every brave sense of the word. He needs to believe in himself again.

Several have asked about Spen. He has nearly two weeks of consistent binding meds in him. We can't say he is miracously well but there are some good signs. He has lost weight and his stomach seems to be his biggest battle. He's in good spirits and gets out frequently for a diversion. He wants to be with us and is helpful to his brother. At times it is hard for him to understand how Coleman reacts to things but the Coxs stick together through thick and thin. He has complained of knee pain which we are watching carefully because that's how the leg issues started with his brother. He is trying to keep up with his school work but he has lost a lot of his attention span. My mom, God love her, is home schooling him and working up a motivational system for him. When all of Coleman's labs are in we will then determine when Spen needs to do the same full work up in Maryland.

Again I am reminded,
Do your best
Prepare for the worst
And trust God for the victory.

After so many hospital runs one thing is clear, if your illness doesn't show up in regular labs or fit in a prescribed box, so many docs just don't know what to do. Its truly an injustice to see a child in so much misery surrounded by white coats who are at a loss.

Sorry to wax on so long but I'm sitting in a hospital room with a numb countenance for my son and a numb backside. Thanks for continuing to pray.

Sent from my Verizon Wireless BlackBerry