Day 67 - The Nerve

As Daniel's grafts have formed and tightened around his limbs and torso he's formed contractures. This is a tightening of the joints and musculature. It makes it really painful to move and stretch as your body just wants to fold into itself as opposed to extending. Add to that the tightening skin that's sort of like one size too small and you've got A LOT OF PAIN. So what's happening with Daniel is that it's really painful to raise his arms up or bend/straighten his elbows. To understand how extreme the contractures are for Dan's shoulders right now I'll say that if someone were to raise his arms up over his head (if that were possible) it would tear the skin and connective tissue under his armpits open.

Yes, that's what actually happens when they do stretching while he was sedated like before a surgery. They don't stretch his arms that high but the tearing can start when he's only raised his arms half-way. Eventually he may require a surgery to do help release this tightness, but it's better to wait about 18 months before doing it. Until that time he will be limited in how far he can stretch his arms. The only way to counteract that is to do stretching sessions lasting an hour or more EVERY day. Welcome to our world of rehab.

There is a procedure that our doctors have mentioned. It's called this: Supraclavicular Nerve Block and as the name suggests (duh) it can help block pain sensations like an epidural for example around the shoulder area. It involves placing a catheter (very small) near the shoulder that you can then use to direct doses of medicine that will block the pain associated with that stretching I've mentioned earlier. The placement is super important, but once it's in then this can work real well for pain management when you're doing that stretching and movement.

Today we walked Daniel around several times. He took a really long walk down an elevator and over to the surgery waiting area on the 2nd floor. This is his longest walk to date. We followed along with a wheel chair and scooped him up and continued to roll around the building ignoring his whimpers and little pleas. Once we felt we and he had had enough we returned and let Daniel rest in bed. Well not rest completely no no nooo - we had both his arms doing stretches again and his MPA to stretch his mouth all at the same time. Good thing Peter Pan was playing to distract.

We will end the day with a dinner of spinach salad and walnuts, chips and drink.