We received word early this morning that we had a bed at Children’s Hospital of Birmingham. Apparently BCBS worked out transport with an ambulance service that was out-of-network for us (LifeGuard). Our social worker told us to make sure to document everything about our problems arranging transport in the event we received a bill from LifeGuard, so I made sure to jot it down in my notes.
Dr. Roca also came in before we left and said a follow-up appointment had been set up for us with Dr. Maertens for February 19th of 2019 but she wasn’t sure of the time. I will have to call his office and confirm a time for that appointment. Dr. Maertens had told us he would not be seeing Annadelle on an outpatient basis and that I could find a neurologist that I wanted to use. I had specifically asked him about follow-up appointments so there is obviously some miscommunication between the doctors. I’m not ready to tackle all that just yet, though. I’ll deal with it when we get settled in rehab.
I’m writing this post now from the front seat of the ambulance. It feels so weird to be out and about on the interstate. Annadelle is playing on her iPad and eating BBQ Fritos. She has been pretty quiet through the trip and took a short nap earlier. She’s so excited to be going to Birmingham since it is closer to our old home, close enough where her friends and other family members can visit.
Chris and I will have to apply for a room at the Ronald McDonald house in Birmingham, but we have been told to expect a wait. Apparently there is always a waiting list at B’ham’s RMHC. However, I’ve been told the hospital facilities are probably a lot better than what we had at USACW as far as family and eating areas.
We are praying we see some rapid recovery now that we will be inpatient. She tires out during the 20-30 minutes of rehab she gets now so I’m curious to see how well she does with a minimum of 3 hours. I think if they are able to make it fun for her, especially in a group setting, she will do just fine.
We have had an eventful day with our transfer and getting settled in at Children’s Hospital of Alabama in Birmingham. The facilities here are much nicer than USACW and the amenities available are outstanding.
Our room has a great view! We are able to look over Railroad Park and have a good view of the train which Annadelle loves. We did not have a good view in any of the rooms we were in at USACW so it is a welcomed change.
We were able to meet the majority of our care team before dinner. Several doctors and therapists came in to introduce themselves and get a feel for what Annadelle can do as far as her movements. We were told to expect a minimum of 3 hours a day for therapy starting tomorrow. The only “off” day we will have will be Thursday for Thanksgiving. We are bummed that we will be in the hospital during the holiday, but we are so thankful that our sweet girl is making the progress she has! What better reason do we have to celebrate the holiday than that!?
We were also told that Dr. Ness will be coming by sometime to meet Annadelle and look over her case. Dr. Ness should already be familiar with her case since Dr. Sanchez talked to her about it and asked her to look over Annadelle’s scans. We are excited to meet her as we have heard great things about her. Apparently people from all over the country come to Children’s to see her regarding TM and AFM.
Overall we are very excited for our stay here and are hopefully for significant progress. Please continue to pray for complete recovery for this princess of ours.