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!~
Today is the day we went home from Denver. It was our 14th day in Denver, but 13th day of treatment. So many good things have come from this trip. We are so thankful to everyone who made our journey possible. We could not have done it without those who helped us to raise money and those that donated. Our Sunday School (life change group) has truly helped us "change our lives". I love each and everyone of our classmates like family and our entire church and friends and family all over the country have gone above and beyond...thanks to each one of you!
We woke up at the crack of dawn on Saturday morning and finished the packing and cleaning of our room at the Ronald McDonald House. We grabbed a quick breakfast from a drive thru (haven't done that in years!!) and headed straight to the hospital. We did our last soak and wet wrap and finished up all of our wet laundry. We said our goodbyes to the wonderful nurses and staff. They have been wonderful these last two weeks.
Immediately after he was out of his wrap, we headed for the Denver airport to wait for our first flight. We got there two hours early and made the flight with no problems. By this point, I was already tired from cleaning our room, packing, checking out, bath, and wet wrap. I don't think I was prepared for a 3 hour flight, a 2 hour lay-over, and another flight after that. It was a looong day!
We made it in to PCB around 8:00pm and Chris was waiting for us outside. Bailey sure was happy to see his daddy. I think Chris was amazed at how good he looked and felt. So far he has not had a flare since returning home. We are working on making sure everything in the house is allergy-proof (most already was) and working on getting in a routine here at home like we were at the hospital. It is very important to train him in a routine. We have tons of medicines to get filled so that we have everything we need at a moments notice for a flare, or if it is time to "step down" on some of his meds. We are also working to get him seen this week by his local Dr. and the Dr. in Orlando. We have to meet with them to go over his treatment plan and catch them up on his success so they will know how to treat if we call or go in for a visit. Denver is wanting him to come back for a follow up visit at some point so they can document his progress as well. I told them not to hold their breath. We may do a virtual visit over the computer. Flights and arrangements are just too expensive. We will definitely stay in touch as much as possible though. They did give us 24 hour phone numbers and contact info for all of the Drs. I hope to put up some new pics in the next couple of days. He is feeling so good. He has wore shorts and short sleeves the last couple of days, which is a huge step for him. We are pleased with everything that has happened these last couple of weeks and continue to see amazing progress daily!
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!!
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!!
Day 10 of treatment here at National Jewish went pretty well. We managed to get in school work, some art projects, meet with Dr. B and Dr. Elizabeth, have a time with child psychologist, two wet wraps with soaking baths, and a food challenge to sesame. Staying in this room is getting really old and we are ready to head back to Florida. However, I have few reservations about leaving because there are so many unknowns. The drs still can't tell us for sure what is causing most of Bailey's problems, so without knowing the cause, all you can do is treat the symptoms. Treatments on his skin are helping, but they aren't sure that they can get him to a clear point past where he is. They are hopeful, but can't guarantee that this will work forever. Talks of cyclosporine and future PUVA treatments are still on the table at this point and I am so scared to leave not knowing how to take care of this. They say that they will stay in touch and I can call, text, or even email when we have questions. This makes me feel a little better, but still....Please be in prayer that their treatment plan will be just the thing he needs. We also are going to need to go to Orlando more to the dermatologist or find one that is a little closer to home.
Later in the afternoon, we went by the park to try out his boomerang that he got yesterday. He really enjoyed "trying" to throw it, but we are gonna need to watch a few youtube videos I am afraid. It is much harder than it looks. :) It was so windy and chilly, we could only stand it for a few minutes. I think we were out there maybe 10 minutes and we were frozen.
At dinner Bailey had some Spaghetti o's and meatballs. He has been wanting some forever, so we just so happened to find some in the pantry at the Ronald McDonald House. It was a perfect dinner for him! He experienced a little chest pains during dinner and we had to take a little break, but we think it was heart burn from all of the weird things in his diet. He has had wheat for the last couple of days and today of course, was the sesame seeds. He had to eat a LOT of seeds. After a few minutes of laying down, he was ready to go back down and eat the rest of his yummy spaghetti o's. As soon as supper was over, it was time for a trip back over to the hospital. We got ready to get him in his next soak and wet wrap. I snapped a few photos of his skin to share. I am hoping to have some nice photos of before and after next week. The hospital set up a photo booth in our room and have taken photos of him along the way. I think they are going to share them with me so we can see the difference.
If you had seen his skin before, you know it was really open, often bloody, crusty and lots of different textures. Now we are down to only a few tiny "holes", which they think are the large open sores where they were the deepest. They say these will close in a few days, as this is the area that was the deepest. They are hopeful that the Purple/redness will fade and his skin will continue to smooth out. All signs of infection are gone and without any antibiotics. They say that 80-90% of bacteria is washed out and flushed away by the soaks and wraps. As the skin heals, there is not as much space for bacteria to live, so it often moves on and leaves. He will continue the bleach baths 2x per week to help keep any germs off of his skin. He is still very sensitive to bacteria and allergic to most strains. Keeping him away from bacteria is impossible, but keeping his skin healed should help with any infection or dangerous reactions. Our care plan will help us keep his skin in good condition so that it can heal slowly and healthily. Wet wraps are not so fun, but as you can see, he really makes the most of it. The sweatsuits help keep him warm and mobile instead of having to be all wrapped up for hours. He can go to the bathroom, play, and move around the house. In the wet wrap below...we soaked for 20-30 minutes in warm, clear water with NO cleansers. We then apply a thick layer of a high-dose steroid on all of the affected places and then apply Vanicream ointment AROUND (not on top of) the steroid. We soak men's tube socks in hot water and apply a wet tube sock to each leg up to the upper thigh and each arm to the shoulder. Next, a dry tube sock is put on top of each wet one and then dry underwear and sweats. The sweats are thick enough to keep him from feeling wet and protect furniture, etc. When his torso is back we can wrap his body by also using wet cotton pjs under the sweats to cover that area. If his head gets places that won't go away with cream, we have an option for wrapping his head as well. Fortunately, he doesn't have this problem right now. Thanks for your prayers and for all of those that helped us get here. Without you, none of this progress would be possible.