Thursday, April 24, 2014

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.

1 comment:

Debbie Haley said...

Thinking and praying for you and your family. We are members at Westwood church if Christ in McMinnville. Your family is on my heart. Much love and healing coming your way. Debbie Haley