Moving forward

Yesterday we had another potential hiccup brought to light: it is possible there was some nerve damage done during one or both surgeries. The doctors aren't certain that's what is going on as the evidence popped up after some med changes. The good news is that, med change or nerve problem, both are resolvable; though there are no guarantees if it is related to nerve injury.

What alarmed us? Well, Sutton got very mad yesterday and developed a 'two-face' appearance. Like, Batman style. The left side of his face turned very red and sweaty (this is normal for him) and the right side of his face stayed cool and had normal skin coloration with a slightly droopy eyelid - with a very precise line right down the middle of his face. The discoloration is still visible today, though it is very faint, and when he is more awake he can open his eyes symmetrically. Just like many other things we are watching and waiting. 

Today we have had some big strides. When plastic surgery came around we asked if it would be okay to sit him up in bed for a little bit. She cleared us, so he sat up for a few minutes! He is incredibly weak and has head control similar to a newborn, but it helped him get some new positioning (which has been very limited due to the tissue flap) and move a lot of the secretions out. 

Afterwards we positioned him as best we could "sitting" in bed and turned on a movie. For those of you that know us well, you know we haven't had cable in years and watching TV is a very rare occasion in our home. That being said, our kids love the special treat of being able to watch a video. After repositioning and turning on a movie, Sutton has been downright happy for the first time since June 16. He waved, happily kicked his legs and even gave his daddy a little smile. There is finally a little light at the end of the tunnel. Even though we know there may be more challenging days that lay ahead I think there is finally a little grain of hope and excitement that normalcy, or some version of it, isn't too far down the road. 

Also, he seems to be regaining some strength in his vocal cords. This will really be our hold up when it comes to eating by mouth again because if the cords are not functioning well they can't protect his airway and he could easily swallow food or drink into his lungs. We aren't naive enough to think the strength in the right vocal cord will develop rapidly after a year of little to no movement or that the left one can learn to compensate fully in a few days, but his tiny dinosaur noises (as we lovingly refer to them) are getting stronger. At this point his cry is just slightly above the sound of a whisper, so we've got a ways to go, but he is progressing. 

Overall, we'd call the last two days a win. Cheers to many more days on this side of his recovery!