Monday, April 21, 2014

Day 1 at National Jewish Hospital in Denver

He loved all of the new movies!
There's something on the wing!!!!!!!
Sad face because he misses daddy!
To keep from blowing up Facebook with so much information, and to keep me from making 10,000 phone calls a day, I have decided to use our old blog for updates.  Our day of travel yesterday was exhausting (to say he least) and we were worn out by the time we made it to Denver last night. My goal was to post every single night of our trip, but we were beat! We had 2 plane trips (a 1 hour and a 3 hour flight) Everything went smooth, but lugging all of that luggage was enough to kill my back and hips. I was so sore last night when I laid down. Bailey enjoyed our flights and we tried to have as much fun as possible. He spent most of the day crying on and off because his daddy wasn't going with us. The picture here is of "something" on the wing. The window had fog on it so he made a stick figure on the wing of the plane. We also enjoyed the free movies on the long flight. It made the time pass by much faster. We finally made it to our hotel at bedtime and went straight to bed. We tossed and turned all night and woke before the alarm went off of course.

Bailey loved the in-flight free movies

Our view from the hotel
Someone didn't want to wake up at all!

Today was our first full day and we happily checked out of The Hilton Garden Inn downtown and headed for NJH. We made it to the hospital ahead of schedule and quickly were able to check in. They did a few breathing tests and checked all his vitals and we were given the tour of the pediatric skin clinic area. I was very pleased to see so many families here and there are lots of amenities for the kids and their families. We even have a large kitchen area, living area, and a laundry area for washing all of his wet wraps clothes.

Enjoying a Gluten Free Burger!

After we were settled in the private hospital room, several people came by to say hello. Our nurse for the first day was Bradley and Bailey seems to really like him. He helped us order Bailey's food and took us to the group art therapy session. Me and Bailey had fun making some masks. We decorated and painted them. I think he is really going to like going to therapy in there. The environment is very friendly and most of the kids here have similar things going on with them. We took a small break and got checked in to the Ronald McDonald House this afternoon and carried some stuff to our room there. That will be our home away from home for the next two weeks. He should be able to leave here at night and go to The Ronald McDonald House to sleep and report back early each day.
Later in the day, we were visited by the hospital photographer to do before and after pictures and introduced to our Dr. Elizabeth and Dr. "B". His name is long (and Jewish I suppose) and is very hard to pronounce. From here on out...he will just be Dr. B. He agreed with all of the things we have tried with Bailey and seemed a little shocked at the appearance of Bailey's skin. I think the pictures and records we sent in advance didn't really do it justice. He is a bit perplexed as they were hoping for something simple like eczema or psoriasis, but as usual, Bailey is a hard case to crack. They are going to be doing some blood work tomorrow to see how his numbers look since they haven't been tested since 2011/2012. Later in our stay we will work on allergies and food challenges. In the morning they have an immunologist coming to look at Bailey and go over his records with us to see what else could be studied.

Since dinner tonight, we have done 2 wet wraps. One was for 2 hours and the second he will stay in throughout the night. They have also given him some meds to help him sleep. I am hoping tomorrow we will get in a routine and will find out more info on our "plan of attack". I will keep you guys posted. Thank you so much for your prayers for my sweet Bailey, but tomorrow, please pray for safe travels for Kirsten. Her an nanny will journey to Tennessee so she can visit with family there while we are gone.

1 comment:

Clint Boyd said...

I thought you were staying for one week--but TWO! My hopes are even higher now that something good is coming.

We prayed for Bailey twice today in classes.

I want to ask more questions but will save them. I miss you guys and am excited to hear more from you soon.