It's no secret that Abby has a difficult airway. It complicates every surgery and can make a simple cold blow up into a respiratory emergency. (Hence why I'm so concerned about germs and flu shots!!)
Today though, the airway, halo, and swelling worked in tandem to cause a miriad of problems.
Abby was supposed to have an MRI under general anesthesia today. The anesthesia resident who "examined" her yesterday didn't check how far her mouth could open in the halo (like a few millimeters!). He also didn't report about the halo. So when the attending anesthesiologist came to see her in pre-op, she had no idea about any of that!
First she said the brace had to come off. I shot that down quickly, of course! Then there was a whole issue of the MRI compatibility of the halo, which had already been determined by ortho. I'm not sure why they didn't believe them! I suggested nasal fiber optic intubation, and she considered that but still felt it was risky with Abby being in the halo. The swelling around her face is also a concern, since that could also mean her airway is more swollen than it already was on Monday. The nurse asked about sedation, but I already knew that difficult airways can't do sedation. It's intubation or nothing.
So....they decided to go with NO anesthesia at all. I totally got that it was for Abby's safety, but we were not prepared for that! My claustrophobia flared up just thinking about it, and I knew I couldn't project that onto her. I didn't trust myself to explain it well. I asked for Child Life to come in and help explain, since Abby hadn't been prepped for that at all. They showed a cartoon video explaining it and she didn't make it halfway through before she started crying. They didn't even get to the doll and tiny MRI machine!! I told them we did not have a chance of doing it unless I was in the room with her. That's not typically allowed, but I also knew how badly they wanted to do this MRI. They finally agreed to let me in.
Of course, at this point it was several hours after her scheduled time. (She hadn't had anything to eat or drink since Midnight, and it was 3:30!) The anesthesiologist also informed me that she should have left an hour ago (kinda rubbed me the wrong way, considering this was her department's fault to begin with!!!) and so they ended up sending Abby back to her room to come back later tonight.
By this point, she was just distraught. I held her and she absolutely lost it. All of the stress and frustration of the last few days came crashing down and she just hit her breaking point.
Seeing her like that broke my heart and I shed some tears too. Her nurse came in and felt awful seeing us like that! Abby finally fell asleep and I kept the lights off and just let her sleep off her anxiety.
We ended up going back down at 6. She was very upset during the ride, but did ok on the table. This time We had a wonderful anesthesiologist who we have had before. She wasn't doing any sedation, but was present the entire time in case a problem arose. She was really good with Abby too.
Abby started out well and seemed to be comfortable as long as I held her foot. After an hour or so, she was over it. Her back and ribs hurt (she can never be that still flat on her back for that long!) and she started moving around more and getting upset. I got permission to go up by her head so she could hear me. I sang loudly over the noise of the MRI machine and tried to calm her down. She sobbed uncontrollably for the last 10 minutes. Unfortunately, her movement resulted in needing to redo the last set of images. I let them know she would need a break if we had any chance of getting them. They pulled her out and let her sit up for a few minutes. That seemed to be enough to make it through the last section, and she persevered.
I already thought that I had the bravest girl in the world, but it was confirmed today! She conquered her fears and was so awesome! (Did I mention that I freaked out during my OPEN MRI and almost couldn't do it?!?!). She got a bear, a coloring book, and crayons from the MRI team. She also had two great presents waiting for her in her room: Caleb and Daddy! We let each of them open a Christmas present early in celebration of their various achievements. :)
She has been so sad and just not herself. I can only imagine how much is going through her head. She hardly talks and mostly stares listlessly into space. I can't get her to eat or play anything. Even the sight of Caleb didn't result in the reaction we had hoped. He was a little disappointed, but I explained that she has been through a lot and it will just take some time. They are here through Christmas, so I'm hoping having him around will help.
This kind of experience is tough enough for an adult, but just infathomable for a six year old. This sweet baby has been through so much and she really just needs a break. We would appreciate your prayers as she goes through this rough time of adjustment.