Although our time at KKI is over, our journey is far from it.
We left Baltimore on a Thursday morning with the intention of heading to Washington D.C. for a few days. We still had not heard back from Dr. Amy Moore’s office, so we decided it best to wait around in D.C. exploring all of the free touristy things offered until we did. We booked a room in D.C. and started to head that way, but we never made it. Dr. Moore’s office contacted us around lunchtime and told us they had a spot available for it- the next day at 4:30pm! If we wanted to see her, that was the only day available because she was leaving for vacation shortly after.
Little did we realize Baltimore was much further away from St. Louis than we knew. It was a 14 hour drive through 7 states, but we finally made it around 3:30am. We checked into the hotel and were asleep about 4:30am, then woke a few hours later to get dressed. We ate brunch at a trendy little diner close to our hotel that we found on Yelp called Kingside Diner. Annadelle loved getting to see a little bit of St. Louis, but it was bitterly cold so we didn’t venture out much.
We made our way to the hospital where Dr. Moore was, which was only a few blocks from our hotel. There were a few other patients in her office, one of whom we noticed was a boy slightly older than Annadelle and in a wheelchair. I wondered if he, too, had AFM and was consulting with Dr. Moore about a nerve transfer.
We had to wait quite a while to see her, but it was worth the wait. Dr. Moore was very friendly and lit up the room as soon as she walked in. She spent a lot of time listening to our story, how we got to where we were, and what kind of progress Annadelle had made since October. She talked to Annadelle for a bit and began to do an evaluation on her. She would pick up her hand and ask Annadelle to move it one way or another, then tell her assistant to mark a specific muscle or region a certain number, like “3 plus” or “4”, etc. From how she was measuring, I assumed 1 was little to no use of a muscle and 5 was complete normal muscle activity. She did not rate Annadelle a 5 on any region, but she did get scored a 1 on a few muscles, such as her quads. Honestly, it was a bit disheartening to hear how she scored her because we believed she had a lot more use of some of those muscles.
Dr. Moore did a thorough examination and scoring on Annadelle, but explained that in order to know exactly what nerves were firing and what weren’t, an EMG test would have to be done. This wasn’t news to us- we already knew an EMG would need to be done- but we’ve learned that EMG’s are not exactly pleasant so it is best to only put the patient through it one time. Dr. Moore has a doctor she trusts to do the EMG’s, so if she was going to do surgery on Annadelle, that doctor would do the EMG a few days prior to surgery.
Dr. Moore said that, based on her exam of Annadelle, she is definitely a candidate for surgery. However, it is too early to do surgery right now. Based on her knowledge of AFM patients that she has performed surgery, she said there is still time for spontaneous recovery of those nerves, so we need to give it 2-3 more months to see how much more she recovers before doing surgery. For her upper extremities, Dr. Moore said she was confident she had some good nerves she could pull and swap around to a higher part of her arm to give her more movement. I think she used the phrase, “That’s the easy part,” to be exact.
As far as her lower extremities, she said she was mostly concerned about her quads and glutes. She said those muscles are some of the most important muscles when it came to walking. Basically, you need the muscles closest to the trunk to walk. If you don’t have muscles working more towards your foot, you can still walk with a brace.
Unfortunately, Annadelle does not have very strong quads or glutes at all so Dr. Moore would need to pull from closer to her feet. That’s not a terrible thing to do on her right leg because her right foot is very strong, but her left foot is much worse. She can only move two toes on her left foot. Dr. Moore said if she pulled from the left foot, Annadelle would lose all motion in those toes. It’s like robbing Peter to give to Paul, a hard decision for us to make as parents, but one we pray we won’t have to make.
Dr. Moore told us to go home and continue therapy both at home and in the outpatient setting, then check back with her via email in two months. She said we could do something like FaceTime or Skype to do another evaluation to see if surgery is needed at that point. Now we just play the waiting game and continue to pray that she makes a significant or full recovery.
After seeing Dr. Moore, we decided to take our time getting home. We had been living in hospitals for four months and wanted to take a few days to just relax and enjoy ourselves. Somehow that brought us to Branson, MO where we stayed for a night. Unfortunately, there wasn’t much to do there except visit a butterfly garden. We thought Annadelle would love it, but it turns out she is terrified of butterflies. She cried each time one got close to her no matter how many times we showed her they could not hurt you.
After we left Branson, we made our way to Arkansas and stopped to see Chris’ longtime friend, Ty, and his family. We went to eat at a local thai place and talked to them for a bit about the nightmare we’ve endured over the last four months. I had not really thought about it until Meagan, Ty’s wife, mentioned it, but Chris and I have literally spent every single day together for the last four months. It’s honestly a miracle that we haven’t killed each other yet.
We finally made it home around 5:30pm today. At 7:30pm, Annadelle had a fever. She has been coughing a bit here and there, but her cough is still extremely weak. Of course, I have been terrified of her coming down with a respiratory illness after our stay in the PICU for 47 days. The PTSD is so real, y’all. I went ahead and gave her some Tylenol and some Mucinex. We’ve tried to make sure she drinks plenty of fluids and I turned on a humidifier next to the bed. I’m saying many extra prayers tonight that she doesn’t get sick enough to warrant yet another trip to the hospital. I’ve got a pulse oximeter ready just incase.
As usual, thank you for all of the prayers and support.