We made it safely to Seattle, having a baby that doesn't tolerate a car seat or car bed without screaming(which leads to blue spells) and driving on icy wintery roads for ten hours was a bit much on my nerves. We arrived in one piece and checked in to our hotel. It was kinda fun in a way to have our little guy in a motel. I know it sounds crazy, but we don't get to do a lot of normal things other families do. I mean, we don't even take him to the grocery store! We went to our appointments with the craniofacial clinic and skeletal dysplasia clinic. They did an ultasound on his hips and found what we already suspected, his right hip is dislocated. It is something that shouldn't be causing him pain right now and it doesnt need to be fixed at this point. Fixing it will require surgery and opening the joint and putting the ball part in. Our day ended with another appointment in the craniofacial clinic. He was concerened that Nicolas was retracting pretty hard and that his carbon dioxide levels were still up and said that the pulmonoligist might decide to admit him to the hospital at his appointment the next day. We were of course dissapointed.
That night we took "p" for a drive around Seattle, they have really pretty lights up and the city seemed really festive. We stopped at a Kmart for supplies and got to try Nicolas in his new stroller. Again, we don't usually even take him in stores and it felt good to feel normal if only for a few minutes. We thought he might want to see the space needle, especially since it might be his last night out of a hospital for awhile!
We both dreaded the next days appointment with the pulmonologist. We got to the hospital a few minutes early and Nick went to get us both iced coffees, we had to get Nicolas' blood drawn and then it was time to talk to the DR. She was concerned for Nicolas for the same reasons the other doctors were but said that he didn't need to be admitted right away. That was a relief. It wasn't a relief however to hear that she thought that if we wanted him to thrive a tracheotomy was needed. It is also a possibility that he will need a ventilator to help his lungs function. This wasn't a total suprise to us as we talk with other parents who have children with CD. Most of them need a trach at some point and even the help of the vent until their airways strengthen. We want our little boy to be comfortable while he is here with us on earth and we are hoping this will allow him to focus on growing stronger instead of using all of energy just to breathe. So after many tears and questions we agreed that the first week of Jan. we would travel back to Seattle and have the surgery done. They have told us it will be a 6 week to 3 month hospital stay. Nick and I will both have to learn to do his trach care and we will need to have home nursing. We are also waiting to find out if there is even anyone in our area that can set up a home vent. If those things cant be lined up we wont be able to come home. This has led us to seriously consider moving and we have narrowed it down to seattle or phoenix. We need to be around bigger and better healthcare facilities for Nicolas. This has been hard on the other children who liked the idea of moving until we told them that we finally were going to do it!
I want to write more, but it is 1 am and I need to feed Nicolas and get to sleep. I do the 1 am feeding and Nick does the 4 am feeding since he is up getting ready for work. If I am lucky the baby sleeps through it, if not, I end up having to get up at 4 am too!
Please just pray for all of us, especially our sweet little Nicolas. He is such a huge part of our family now and we really still believe he can be healed.