Three more weeks that Ella has to stay lying flat, 100% of the time, with her brace on most of the time.
Why??
During surgery, when the bracket was being placed into the femur head (on the left side) the bone cracked. The surgeon had to move the bracket to a different spot in the bone. The break resulted in a space between the femur and head of the femur. This space now needs to build bone. Hence, we need for her to lie flat for a longer period of time.
At the end of the surgery we were made aware of the cracked bone, and we weren't surprised by that news. Simple fact...kids with SMA have more brittle bones for the mere reason that maximum bone density isn't achieved due to lack of gravity and pressure from not standing or walking. Just another way they are more vulnerable than their same-aged peers.
And while were were not surprised by the cracked bone we were surprised that she must remain in the same position for three more weeks that she's been in for two weeks already. Surprised and feeling low.
We're tired. It's exhausting caring for her through the night...although the nights are slowly improving. The days, thankfully, are going well. She's happy and basically pain-free. The surgeon explained that in order to get to the bone, especially the reconstruction of the left socket, the muscles had to be separated from the bones..."it's a messy thing" he said, "and it takes time for those muscles to heal themselves...and it's painful." Yes--we know.
And poor Ella...it is difficult for her to sleep and she keeps getting pumped full of narcotics to battle the pain. Her screams are deafening and heartbreaking...she fights so hard.
So our timetable has altered some. Getting her into a sitting position won't start until that bone is healed. Throw into the mix that school (for all 5 of us) starts in 3 weeks and we now have to begin prepping her teachers and staff for her to come to school in a state unknown to us at this point. Will she still be in the medical stroller or able to sit in a wheelchair? Will it be a combination of the two?
Only time will tell...three weeks time.
