Thursday, May 1, 2014

Denver Day 10

 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.

No comments: