Tom and I have been reading up on Aplastic Anemia. We are getting the jargon down so we can speak latin with the doctors. With Riley's white cell count down Tom read an article that said its the mold spores that get you when your immunity is down, not the regular germs. So we need to do a whole house clean. Yuck. Blood and puss doesn't bother me, but to tackle the house cleaning. Well, we'll just get it done.
I would like to get the carpet out of Riley's room. I already have the laminate flooring. I could wip it out in 3 days start to finish. We are thinking of moving Riley into the Game room which I already finished. I am also considering getting new mattresses for both boys. We need fresh clean sterile conditions.
The school will provide a tutor once they receive the doctor's diagnosis. I would have loved to have Riley go back to school, but the risks outway the benifits at this point. The exposure to germs or even injury is strong. I don't think the school wants Riley bleeding out in front of all the students any more than we do. He's our new "bubble boy".
Tom drives the car with Riley in it like that first day we came home from the hospital with him as a baby. He is fearful of an accident. He leaves a car length between himself and the next car at a stop light. He drives in the slow lane, slowly. Its humorous and scary at the same time. We were told not to do excessive driving with Riley to minimize the risk of head injuries. I hold my breath just watching him come down the stairs, in case he slips and bruises.
Riley still can't take a bath with the hole in the hip from the bone marrow biopsy. They did begrudgingly say he could shower since he hadn't bathed in 3 days. He was getting pretty ripe. They will check the hole next Thursday, but only showers until then and even then its iffy whether he can take a bath. Its because he heals so slowly.
If Trevor doesn't match and we go to the general population, Riley has a 1 in 100,000 match potential. There are 3 million on the tissue donor list, so with any luck there may be some one that matches. The problem is time. It takes several months to find the match. The more transfusions Riley gets the more at risk he is for rejecting tissue. We have to do the transfusions to buy time. We will be looking for Northern European desent. My family is English/French Tom is Scottish/English.
Hopefully one of the tests on Thursday will indicate an underlying cause that is treatable, but that likelihood is less than 20%.
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Hey Stephanie,
ReplyDeleteI have a lot of experience ripping out carpet, count me in if you need any help! I would advise moving Riley out while you do it though in case there is mold in the carpet pad.
How are you holding up? With your FIL's passing in January you all still must be exhausted!
Keep your chin up, hang in there, and please ask for any help you need.
W
Try to think of the 20% as if it was the forecast for rain.... How often do they say there is 20% chance of rain? How often does it rain?
ReplyDeleteStephanie,
ReplyDeleteThere is always the desert to dry out any Oregon molds. When Riley is stable, after a treatment, you can take him to Oro Valley. There are less chemicals in the air, the clean environment is all around, the pool is peaceful. The desert is popular for just this reason for all ages: it has always put autoimmune issues asleep. The heat and dry air support the system. We also took out William's carpets after his immune system collapsed. He had a complete breakdown of his sulfation system and was incredibly susceptible to all toxins and illnesses at a microscopic level. It paralled AIDS.. The children must not be present in the room when the dust flies due to the high level of toxins in the breakdown of the carpet fibers. You may want to hire someone else to do it with a mask since it is very dangerous! There is a great website started by John Travolta's wife, Kelly Preston, on safe and healthy homes and products, because their son Jett was made significantly ill by toxins. CHeck it out and you will learn the very best in safe home environments for children. That is the outside effort. What a child eats inside will impact dramatically, particulary while they are having a collapse. Heal his body and stomach. There are foods that are highly reactive and trigger autoimmune disorders. He will also need vitamins that will boost his healing. We moved to a level of purified water and an air ionizer in the bedroom Building Riley's overall health, in addition to the traditional approaches will be the key. A whole approach to health is the only option, Riley will benefit from every healthy action you set in place for him, Remove all the burdens on his system, and his body may kick start. When you are ready, (sooner, immediate changes are very important for a crises mode child) I can send someone to help you and Tom create an environment that will support Riley during this time of health breakdown. I love you guys and know that Riley is going to be ok with you as parents and the action steps you are taking and will take.