So, as many of you know, Grace had a brain MRI scheduled for this morning at Vanderbilt. The MRI is sort of to check on her, but mostly to rule out something called a Chiari Malformation, which can cause swallowing/aspiration issues. Since her aspiration has increased,, we now know there is something else at least partially responsible for it besides her vocal cord. Grace's ENT doesn't think she has any kind of a neurological disease, but needed to check to be sure.
Anyways, after getting up before 7:00 (not my style) and treating myself to a ridiculously expensive Starbucks to handle the morning, Grace and I arrived at Vandy at 8:00am. She was doing great until the IV had to be put in...and she managed to KICK the IV out as soon as it was in :) So, we started waiting to go back, and then various techs, nurses, doctors started coming by to discuss the fact that Grace has a small staple and coil in her heart from having the PDA ligaiton when she was 8 days old. Now, I knew about the staple, but I have never heard/been told about a coil. I'm pretty on top of Grace's medical history, so I was a bit surprised! I informed a nurse from anesthesiology last week about the staple and she told me it would most likely be fine. What she DIDN'T do that she was supposed to, was make sure the implant record was in the system, or get it ordered from California. If those implants are made of metal, the MRI can heat them up in her body, as well as be a magnet to them! So it's obviously EXTREMELY important that we know what kind of material the implants are made of! I decided to wait to see if we could get the record quickly from Sutter Memorial in CA, since the IV was already in. Grace was a little trooper, and we had an awesome nurse (who happened to be a friend of a friend). Grace kept herself busy by coloring with marker on the hospital sheets and herself...the lesson learned today is that "washable" marker is not nearly as "washable" as they claim :)
By 12:30, we were both done, though. Grace hadn't been able to have anything to eat or drink since last night, and I was starving and exhausted. We decided to call it quits, in spite of the IV being in and rescheduled for next Wednesday at 10:00. I cried when Grace cried while the nurse took out the IV, and have felt horrible for subjecting her to that unnecessarily. So, we have the MRI rescheduled, but we actually don't know if it will really take place until the implant record is received....I can handle alot, but medical incompetency is not one of them!
In the midst of all this craziness, I received the phone call that we've been waiting on for weeks....Grace has been APPROVED to go to Cincinnati Children's Hospital!!! There are a couple logistics to get done over the next week, but we should be able to schedule a date in a week or so! I'm so excited, and thankful for all the prayers that went over that insurance approval! I can't believe it's really happening and that at somepoint in the next few months, Grace will be able to get the surgery on her vocal cord that will literally change her life.
I know this is long, but I just have to add in, that my husband is so amazing and sarificial. Today, Greg took care of Chloe while we were gone, brought me Mexical food from my favorite restaurant when I got home, continued taking care of the kids while I rested and took a nap, then let me go to the gym by myself, made dinner, and even vacuumed the house...all while being unbelievably kind and sweet to me. He is the best partner I could ever ask for!
Ok, so bottom line is: crappy day, but FANTASTIC news!!!
