It has been several months since I have updated. I joined the group last fall, was blessed by the amount of support I received even though it was my youngest daughter going through surgery. Thank you to everyone who helped me, I believe it helps to have all sorts of insight. Below is her background this far:
Aug 2014 L5/S1 fusion with screws, due to 33% slippage
Nov 12, 2014 T3-L4 magnetic rod placement for significant scoliosis
Dec 3 2014 lumbar surgery to replace screw that migrated out of place.
Kaylee is 9 years old with Mitochondrial disease/ Ehlers Danlos/ Juvenile scoliosis
These last few months have been awful to say the least. He poor body has been through so much surgical trauma. Our scoliosis surgery lasted 8.5 hours which was the longest time of my life. She lost a lot of blood but was spared a transfusion. Recovery has been the hardest, not really knowing what is normal and what is not. We had a set back and required surgery 3 weeks from the first to fix a screw that came out of place.
It seems as we get a few steps ahead, then new problems or pain sets in and we feel hopeless. I have realized it is going to take a lot of time to heal. She is only six months out from her first fusion. Her lower back has been operated on 3 times within a four month span. We have since been dealing with a "new" bulging disc, they felt it could be from the pressure of the hardware. This pain has kept us up at night for weeks now. For some strange reason it is worse when she lays flat, the pain is barely tolerable. We are so tired and frustrated. The doctor does not seem to think or feel that the disc is significant. I feel it is something, she was doing well until she felt a pop and then a burning in her back. It was immediate pain and this has not let up since. She does great during the day while up, but almost instantly when she lays down the pain starts.
We are dealing with a lot of nerve pain, she is on gabapentin for this. She has no pain meds left, we just get by with ibuprofen and Tylenol. We are going to try a hospital bed at home to see if that Wil help with the positional pain.
I feel I am rambling but I am lost and confused. This surgery was needed, yet it is hard to know we will need at least 1-2 more major surgeries before we can fuse permanently. Any recommendations on pain management, ways to make her more comfortable with positioning etc would be helpful
I appreciate any feedback at this point, she is having a hard time emotionally and we are trying to deal with that. I can't imagine what she is going through, she is always trying so hard to be strong and happy. Thanks for letting me vent a little, there is just so much more than we realised we were signing up for.