Whew, what a relief! It feels so good to have this past us!
We got up early and went to Phoenix Childrens for Gabriella's MRI. We got registered and taken back quickly to MRI waiting. The anesthesiologist came in and went over Gabriellas history with us. She told us about her approach to putting Gabriella under this time, since she was so unstable in September. By the look of shock on my face, she asked me if I even know what happened in September. She proceeded to tell me that putting Gabriella under when she had her stroke was risky, and her heart was extremely unstable during the MRI. She hit a critical point under anesthesia and she needed to prepare for that today. She decided to only put the gas on Gabriella briefly and only do what meds were absolutely necessary. So I went in with Gabriella, and she was such a big girl. She laid on the table willingly. She was scared and crying but knew this was something we had to do. They put the gas on her and it took her about a minute to calm, and they kicked me out. About 45minutes later, they called us back. We could hear Gabriella crying from the hallway. When we got in, they let me hold her. They told me that she was doing well with the gas and her heart remained stable, so they only did minimal IV meds to keep her under. The downfall to this type of anesthesia is it causes the kids to wake up quickly afterwards and VERY agitated. Gabriella cried for a good 25 minutes before we got her to calm down. She started coming around and she drank some water, and before we knew it we were being discharged!
She has been home and relaxing all afternoon now. She's eaten a PBJ sandwich, sausage, cereal and chicken nuggets. I swear, that girl can put DOWN some food nowadays!!! Positive part of the type of anesthesia they did is she isn't sick!
My work has started though. I have called the cardiologist directly, his nurse, and the Neurologists nurse. I am about to start my second round of phone calls right now before close of business. We NEED these results and the authorization for transplant SOON! Once we get that, we can head to Loma Linda for clinic and that's IT! She'll be listed!!!!!!!
If you can pray specifically for the MRI results being clear and the process being quick, because Gabriella's heart cannot wait forever.
I was reading some links from Twitter and found a GREAT write up on kids with RCM. I have read a lot of restrictive cardiomyopathy reports, but rarely do you see them for kids. Probably because it happens in less that 1 per million children. There's not a lot of information. But if you want a refreshed on Gabriella's condition, here is the link: