Thursday, April 24, 2014

Denver Day 3

What an emotional roller coaster we were on today. We got to the hospital bright and early excited about the progress we are making. We were up a lot last night so that last time we woke up, we went ahead and packed our stuff for the day and headed on over. As soon as we got to our room we went to do all of his vitals and nasal wash for the morning. Our nurse, Bradley, told us that the cultures on Bailey's skin came back positive for MRSA and they were not really surprised with the number of open places he has. They said 1 in 4 kids that come the skin clinic have it because of this. Unlike Vanderbilt, they do not plan on an IV to get rid of the bacteria...they plan to take away the MRSA's place to live by clearing his skin so it can't live there anymore. This was a good answer for me because I know that Bailey is resistant to most antibiotics from over-use in the past.

Dr. Elizabeth came to check out his skin while he was soaking for his 8am wet wrap. She was impressed with the amount of progress he is making and told him he can go to 2 wet wraps and one dry medicine wrap a day, but they called in a stronger steroid cream to speed up the healing process. He also doesn't have to wrap his torso anymore unless he just his legs up to his groin area and his arms up to his shoulders.

Setting up for morning wet wraps

Resting in his wraps
Child life brought him some more art projects and a wii console to keep in the room to keep him from getting bored and to keep his hands occupied. We painted and made some sand art in between people coming in and out.

Dr. B our main dr came in and said that after reviewing more of Bailey's info, he really believed that Bailey has a severe form of eczema that is made worse by the immune system issues. Even though it looks nothing like it, it behaves similar and responds to similar treatments.
 This was really good news until the Immunologist came in and took everything in a whole other direction. He felt that it is more a genetic thing, a pulmonology thing, or a heart problem (yes, heart patients can have strange skin problems....I had no idea). Some of the things that made him think some of these is the blisters (which are not typical with eczema), family history of auto-immune, lung issues, etc. He is wanting blood work and an echocardiogram to rule some out and is figuring out how he can also get blood from Kirsten and Chris to rule out genetic things as well. This kind of knocked my feet out from under me and took me back to that initial feeling of having no idea what to do. We HAVE to get some sort of answers from this visit. I have a horrible helpless feeling. If they can't agree, I don't know what will come of everything. I am trying to keep positive, but I am so tired and miserable, it is really hard at this point.
Later in the afternoon they did his first round of skin prick tests on his back to see what his allergies for the first rounds of foods are. For the first time ever, he only had two. This doesn't mean that it is final by any means, but now we can challenge and see if he has a reaction in a controlled environment. The only two that showed up is pnut and sesame seeds. This is crazy to me. The very first time he was allergy tested, he reacted to almost everything on the tests and had over 20 food allergies. He has been avoiding gluten for years in the past and recently for almost 2 years and has tested positive to it at least 2 times even in blood work. He is hoping that they will challenge and he will pass so his diet can be opened up more. The nurse also came by with some news of his immune system work up. We knew his immune system was way over active, and they have ruled out hyper-IgE syndrome, which is great, but his immune numbers are at an all time high. Most kids with a "high" immune system top out around 200. His was 17,500 the last time it was checked in Ft. Lauderdale. Yesterday....wait for was 44, 000. Yep, 44,000! I was floored. They said that with the amount of skin problems, they are not surprised. It is not the highest they have monitored (but very, close).
Late afternoon I decided to go to a class for parents and Bailey took a little nap while our 2 loads of laundry were washing at the nurses station. Soon after, we left for the evening and went to find him a gluten free pizza and took it back to the RMH to eat and play a game in the kitchen area. We washed our sheets to see if that would help him sleep better with his own detergent and went for a ride back to the hospital for soak and wrap number 3 at 8pm. I am not comfortable with doing them at the RMH in a non-sterile environment, so we made arrangements to go back at night for this so he can use HIS tub in HIS room that is clean and sanitary. We got him all wrapped up and headed back here for bed. I gave him his sleeping meds to help him rest so he can sleep in the wraps all night (or as close to all night as possible), but the meds are not kicking in even though we have doubled it from the first night. He is not resting, but tossing turning and crying because he is itching and hurting. His skin looks better so I just wonder if it is burning and itching because he is healing and there is new skin on his "places" that are normally sores?? I don't know...but I know he is miserable. I am hoping for a good night's sleep for us both so we can handle the day tomorrow. I have been holding him and massaging for the last hour as he cries.
Please be in prayer...I know we are only on Day 3, but in my mind, I see time slipping by without concrete answers. Please pray that they can work on this and agree on diagnosis, treatment, and care for him.

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