Home...Finally!

We finally made it home on Thursday of last week and are slowly getting back to normal...whatever that is. Bailey has been doing well and we even made the trip to Tennessee and back with no repercussions. We ended up staying in Tennessee for about 9 days and enjoyed seeing friends and family for an extended visit. So many people have asked me for information on what the Drs. in Colorado came up with. There are some things that are unclear at this time and we are working on answers. They do not know why he wasn't born this way, why it happened out of the blue when he was 3, why it is so aggressive, why he blisters, why his adrenal glands haven't started back up on their own, and why he has the problems with the immune system. Hopefully some of the testing will reveal a few of these things, but here is what they think. They think that Bailey has a rare form of an already rare kind of eczema. It was more than likely caused by damage to his skin barrier. He was diagnosed by Vanderbilt with this from multiple biopsies, but it doesn't look like any cases of this form of eczema that they have ever seen. However, it does respond to some of the same treatments. They basically went forward with treatment, even though they weren't sure that it would work, and low and behold. It is working. They said that Nummular "blistering" eczema is a rare form, and Bailey's is even more rare in appearance and behavior of the disease. We are continuing the same treatment that we were doing at the hospital and have moved down to a lower level of care than when we left. He is still in the moderate category, even though to us he looks amazing. We will stay on this program until hopefully all of the redness fades. He now has NO open places and is feeling really good. He has to go to the Dr. in Orlando and here in PCB to show the Drs. his amazing progress. He is also enjoying his food choices and I can tell he is gaining a little weight. His diet was so restricted, it was impossible for him to gain. They were hoping to increase his calories and this has not been a problem. He is eating everything in sight!! (except for Pnuts) I will post some pictures in the next day or two so that you can see some before and after pics. Until then....it's time for another wet wrap. Gotta run!~

Denver Day 12

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!!

Denver Day 7

This pic is in the large park near downtown. It is from the area where the Museum and the zoo are located. Think of it like a smaller central Park. Love the snowy mountains in the background!

Well, today once again started out bright and early at the hospital. We got there a couple minutes before 8am and went straight to our room. We ordered breakfast for Bailey and got the bath process going. He did a bleach bath today to make sure any germs are gone and soaked for almost 45 minutes. After his soak, we got him all wrapped up and in the bed for 2 hours. While he was wrapped, I used that time to feed him breakfast and we worked on school. I was his hands for both, of course, and we managed to get all caught up for the upcoming week on his school (he got a day behind at the beginning of the week when we first got to the hospital).
After he was out of his wrap, I carried some of his laundry down and got it in the washer so we would have plenty for the next wraps of the day. His nurse came in to look at him and is pleased with his progress. She said we could skip the midday bath as long as he applied some lotion at the museum...this please him to have the whole afternoon. She also thinks there is a possibility of staying longer, but I will have to talk to the Dr. in the AM.
We headed out a little before lunch and went over to the Denver Museum of Nature and Science for the afternoon. We had a wonderful time looking through the museum. They have beautiful exhibits there. I took a ton of pictures (and so did Bailey), but the camera is in the trunk of the car.  Bailey refuses to let me go back down and get it. He is super sleepy and doesn't want to walk down there or stay alone in the room. I will post a few of our pictures on tomorrows post. :) Bailey said his favorite part was the dinosaurs and the mummies (even though they totally creeped him out).
For dinner, a Korean group of ladies came to the RMH and cooked a yummy supper. Bailey said that it was no where near as good as aunt Linli's food. I tried to explain that Korean and Chinese are a little different, but to him, Asian is all Chinese I think. ;) He said even Linli's rice is better. They were very sweet ladies and they made a spread. They had Korean beef, a vegetarian stir-fry with vermicelli noodles and veggies, a beautiful salad with a sesame dressing they made, and fruit. I appreciated a nice meal tonight. I feel like I have either skipped a lot of meals or eaten junk or granola the whole time. I think in the last week we might have had 2 really yummy meals.
After dinner, me and Bailey took a ride into downtown and I drove slow and let him take pictures of buildings and things he found interesting. Denver is such a different place, he found lots of things to take pictures of. We also found a couple of places that we would like to visit. They have a really nice aquarium that we hope we might can squeeze in maybe just an hour or two to try to visit one evening before they close, and we also heard about an area just outside of town near the mountains that has a natural hot springs. He is wanting to ask his dr. if we could go there one day. I told him we will see. We are starting to run out of time. We should leave on Saturday unless our dr. tells us we need more time tomorrow.
Overall, today was a great day. He laughed, played and danced around all day. He told me several times how good he felt and he was in a really good mood. Tonight when he laid down, there was no pacing the room, no crying and no needing massaging. This is a first this week. He is usually itching and hurting because of the wraps he has to sleep in. He says they itch his skin. I am guessing it is probably the strong meds inside that give him the itchy, painful feeling. Tonight, he actually fell asleep while I was typing this out. Watching him sleep makes me so happy. He is peaceful tonight and not in pain. I am so thankful to each and every person who has made this trip possible for us. I can never repay this gift. Even if we don't get everything we were (and still are) hoping for, know that you gave him hope and some ways of managing this horrible illness. That makes it worth it to me. I still pray that we get more answers and come away with clear skin and no more pain. On that note....I wish you all goodnight! Love and Hugs to everyone!

Denver Day 4

We got a little more sleep last night after hours of pacing, massaging his legs, and holding him. He managed to stay in the wraps until around 1:30am. We woke a little earlier this morning and went straight to the hospital to get started on the days routine. This morning we met our new nurse for the next 3 days and we also met Dr. Naomi our other PA that job shares with Dr. Elizabeth. They came in to examine Bailey and get caught up on our visit and Bailey's progress. Dr. B came in while Bailey was in his first bath and examined him... and I cornered him about my visit with Dr. Abbott yesterday. He apologized for the confusion and said that they did talk yesterday and decided that what the immunologist told me was a little incorrect. He was hoping for that second opinion, but he said immunologists often want to get to the source without helping what is ailing the child. He feels there is no danger of a major heart condition because he had been in hospital several times, in and out of drs all his life and nothing ...that would be of concern. He said they could monitor his heart if it made them feel better. His pulmonology tests all look good and no signs of breathing issues other than his history with anaphylaxis. For now...they are going with nummular Dermatitis which is what his the biopsies at Vanderbilt concluded, but they didn't believe because it looks so different. He thinks it is much more severe due to his immune responses...he says your skin is your first defense against things your immune system can fight....if his immune system is going overboard, it could be causing a larger reaction with the skin barrier. This is not official yet, but this is his initial thoughts before all the tests come back. His hope is to repair the skin "barrier" and in turn decrease his immune responses.The last few days have been very painful for Bailey and we aren't so sure why. His skin is looking better, but he is hurting worse. Maybe from the healing or maybe not knowing how to feel good. They said kids with chronic pain can sometimes get confused when they start to feel better all of the sudden. He went with the Psychologist this afternoon and did some biofeedback exercises to cope with the pain and calm himself when he is hurting or anxious about the pain. She said she will continue these until he can master them over our stay. Art therapy brought lots more activities and movies for him to watch while he is wrapped and we went for a walk outside the hospital to get some sunlight and fresh air.

Later in the afternoon, Nurse Lauren came in and did his skin prick tests to environmental allergens and lots were positive allergies. Most we already knew. Much to his dismay, he is still allergic to cats (sorry Todd the cat, no chances of you coming inside...that is what he was hoping for). They said we need to really make sure everything is allergy proofed in our house. We have always done this, so this isn't new either. The only thing that we might need to work on is getting rid of carpet. They also got back blood work today from food tests that were done yesterday and said even though most of his pricks were negative, his blood result to milk was very high. They will be challenging this next week to see if it is a real allergy or a fake response due to the over-active immune system. He also will challenge peanuts and sesame seeds along with wheat.

Bailey working on art while his test is finishing

His back at the beginning of the test...some whelped up quickly

Nurse Lauren getting his test started while he played his DS

We finished our day with bath 2 and lots of meds and a trip to the prize closet for a new toy as a reward for all of his hard work. We came to the RMH for a couple of hours to work on some art projects and eat some dinner. We are packing up as I speak to run and do the night soak and wet wrap back at the hospital. Pray for sleeping meds to work tonight, sleep for both of us, and healing for his little body. Love and miss you all!!! (especially my Kirsten and Chris!!! <3>

Trip to the prize closet for a toy and $110 for helping with a study on kids with severe skin problems.

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 flares...now 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 it....it 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.
UNTIL TOMORROW.......

Where has the time gone?

Ok, so Spring officially arrived and has brought with it MANY BEACH DAYS! We are really enjoying our beach time. We had a wonderful Easter and celebrated with our new church family. It was definately weird not being back home with family for our traditional dinner though.

This is the kids on one of their last days of school work for the year. They were soooooo excited to be done for awhile. They really worked hard these last few weeks.

Melissa ready to head to Scampy's for some seafood.

We have also had some visitors!! We have had Nanny and Poppy, Nanny and Nana, and of course, The Jenkinators.

Kirsten out in front of our house being goofy!

Ready for an evening ride!

 We are so glad that it is summer and ready for a visit back home. Hopefully, July 13th we will be pulling up in TN for a two week stay with family and friends! Hope everyone back home are doing well. Love to you all!

No news is good news, right?

Well, once again, I am the blog slacker! I never make any promises, but I do try to keep you updated. We are all doing lovely and spending lots of time outdoors. Between the parks and the beaches, we spend most days outdoors. We finally finished our schoolwork a couple of weeks ago, so the days are now much more fun around here. We have been working on some projects, educational games, and watching lots of movies. That's my favorite kind of day. Much more relaxed than usual.
Bailey is doing great and healing nicely..thank you so much for all the prayers and we continue to hope that he will get a little better everyday!
If you get a chance this summer, come down and give us a visit, we miss everyone dearly.