So really, I just noticed that I didn't start posting the first day we got here, so yesterday was really day 13, but day 12 of treatment at the hospital. Yesterday we did our wet wrap in the am and had pictures made for the final day of treatment. The drs came in and got my pics that I had brought because they said they were a little bit better. They scanned them in to go with theirs. They have a medical photographer that they have here to make pics in a photo booth they bring to the room. I guess my (at home/cheap camera) pics were better :) By the time we did the bath, wrap, and photos, it was time for lunch. Bailey enjoyed a REAL personal pan pizza!
After we had lunch, Bailey got to go with Dr. Darr (child psychologist) and work on their relaxation techniques a little more. He mastered his levels and she also took me so that I could learn and practice with him at home. They help him deal with pain and itching and focus on something else.
In the afternoon, we had a conference call with Chris so he could hear from the drs and ask any questions he had. They got a kick out of some of his questions. Let's just say the dr was convinced that Chris' cleaning while we were gone was a ploy to smooth over needing a truck with leather. He said, I think you husband wants to trade vehicles and he is buttering you up with lots of cleaning...lol. Chris had asked if we needed to get rid of the soft top jeep because of allergies or triggers to his skin. ;) They said no...lol. Overall, the meeting went great. They are also frustrated that they can't give him any more help in these two weeks...but they aren't finished. They think he will continue to do well at home, they gave us 24 hour phone numbers to call with questions, they are reaching out to their colleagues, as well as the tests that they will follow up on. They said to just consider this the start of his healing process. He has been sick for so long, they say it is impossible for his body to bounce back from years of sickness in two weeks. They also showed me all of his labs from his time here. When he was admitted to the hospital his adrenal levels (which make natural steroids to help you when you are sick) were 0.....yep, 0! They say it is very important for him to stay away from people that may have contagious sicknesses like flu, viruses, etc. That is why he has a hard time getting better and his body may not be able to fight. They would like our dr to send us to another endocrinologist to have these levels tested again in 6 months. If they are still low...maybe consider adrenal stimulation to see if we can "kick start" it. This is a little scary, but not really surprising. They say it was more than likely caused by using oral steroids when we lived in TN. He hasn't had any since we moved, but his body still hasn't started making it's own.
Chris has been working on making the needed changes at home and we will try to work on getting rid of the carpet. They said that it could be a huge trigger for him. We will have to figure out if we want to work with our landlord or move somewhere with tile or hardwood. They said that it harbors so much dust, dust mites, pollen, and bacteria. :(
We are going to have so much to do when we get home, but we are excited with the amazing progress we have made. Every time I take him out of a wrap, he looks better and better. It is very encouraging to see him progress even still. His attitude has changed dramatically this week, as well as his pain level and itching. He is excited about the summer and going swimming soon! We are ready for FLORIDA!!
How a Simple Notebook Can Change Your Life
19 hours ago