Friday, May 2, 2014

Denver Day 11

Yesterday was a long day full of testing and dr visits. We started the morning off with Dr. Abbott (the immunologist) and two of his assistants. They came in with info on two different studies that they were hoping to have us participate in. It required a blood draw from each of us, but could lead to lots of more studies on cases like Bailey's. One is for here at National Jewish and one is for Baylor University in Texas. They are going to basically run our DNA and see where Bailey's "code" is messed up in the area of immunology and skin. They can keep in touch if things are found and let us know of any abnormalities. If Baylor agrees to pay for everything, they will also be testing Chris and especially Kirsten because she is a "non-affected" sibling. It won't really do us much good at the moment to know what is causing it...but it can always lead to treatment in the future for Bailey or for other people with the same thing. They will also be running a panel on us to find any other diseases that we may have in the future. I find this especially scary (and I almost don't want to know), but if we are going through all of this, we might as well know and be prepared. It took me forever to fill all the papers out and ask a million questions. Hopefully, something good will come from this. There has to be a reason that our family and Bailey has dealt with this for so long. I hope that what they can learn from us can help.
After the tests were complete, we did our first soak and wrap and they got his vitals for the day. Dr. Darr (child psychologist) came by to see him and took him for his biofeedback and relaxation exercises. She is helping him learn to relax more and be able to deal with chronic pain and frustrations of being "sick". He enjoyed today's visit much more and got to the next level. He was super excited that he had mastered the other. :) He talked Dr. Darr into coming again on Fri so we can do it together. He wants me to see him do it. It requires "mind control" of his breathing, heart rate, etc. He finds it amazing that he can control these things.
When he was out of his wraps, we had some lunch and started on our milk challenge. We were worried because he often vomits when he has milk. He tested VERY allergic to milk and cheese. We have had to avoid the milk products since we had been here. Usually, he would do fine with his cheese, it is usually just the milk he had trouble with. When they started the test, they gave him a tiny cup, we waited 20 minutes and then about 1/4 cup. Another 20 minutes went by and we tested vitals and breathing. All was good so we test two more portions (1/2 cup and 1 cup) and waited two hours. He passed them all with flying colors. They think maybe lactose is his problem with milk and we used lactose free milk. They said he can have any kind since he passed the protein fine, but if he has aggravation with the milk, use a lactaid product to help his tummy. This is fine with us. He has come away with eating anything he wants except peanuts (we didn't challenge these because of anaphylaxis in the past). He is fine with this. He doesn't care for peanuts anyway! While he was doing his challenges. The nurse brought in a present that Nana, Pop and Kirsten had sent. He was so excited. He got a look and find book, A Colorado mascot candy dispenser, and a KIT KAT which he hasn't had in so long! He was tickled.

We were able to talk with Dr. Naomi and Dr. B this morning and afternoon. I had a total breakdown at the thought of leaving with not many answers. They have assured me that they will help us through the healing process and try their best to keep him healed up. I feel I need more answers, but there just aren't any. I know they are doing all they can. They are leaving the option of immune suppressant medication on the back-burner as a last resort, as well as PUVA. They honestly believe that when his skin heals and stays that way, his immune system should drop on its own and stop the cycle of break outs and blistering. I am hoping they know. They haven't really saw a case like Bailey, so I don't know what they are going on. Trying to have faith and trust is hard.
When we left the hospital yesterday, we decided to run to 16th st one more time to look for some shirts for the family. I wanted some that said Colorado or Denver and I have had a lot of trouble finding some. I found a great deal at a little shop next to Marlowe's Restaurant and we also ran to H & M to grab bailey a pair of shorts. He hasn't wore shorts in about a year. He was excited to buy some bright orange shorts and a shirt that had a storm trooper from Star Wars on it. The little things make him happy I guess :)

We went back to the Ronald McDonald house and packed up some things that won't fit in our suitcase (mostly prizes from the hospital and arts and crafts projects) and carried them over to the UPS store to send back home. We returned to the RMH and grabbed some dinner from the sweet folks that were cooking. They made chicken and vegetarian enchiladas and black beans. I thought it was yummy, Bailey.....not so much. I made him a bowl of ramen since he hasn't had any in so long. He wanted more when he was finished. He said they just might be better than the spaghetti O's. ;)
By the time we cleaned up after dinner, it was time to head back to the hospital again for a soak (and tonight was bleach bath night) and a wet wrap. We got him all fixed up and headed home for bed. Thankfully, Friday night should be our last night here in Denver. We will be heading home on Sat around 11am. We should make it back to PCB around 8pm. It will be a long day. I worry about keeping Bailey's skin in good condition while traveling. Prayers that we can make it home and go straight to the bath. The next few weeks are going to be like bringing home a new baby that requires round-the-clock care. Have a nice FRIDAY!!


michele carpenter said...

Do they test for any preservatives or food additives? Like the weird unpronounceable chemical sounding things they ADD to every wheat, dairy or egg product?

Patty's Stitches said...

Continued prayers for you and Bailey and Kirsten and Chris too. Have a safe trip home with our "new baby". I know Chris is ready for you guys to get back in his arms. I also know a beautiful little blonde headed girl that is missing her family and friends in PCB. Much love, Mom

Julie Hyder said...

Michele...some were tested, but not all. I guess just the most common. Mom....we are ready to have her back!!!