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Update on Daughter

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.


  • I'm new to this forum, but wow, my problems feel pretty small now.

    As a Dad of two daughters, I cannot imagine what you family is going thru. I hope things get better for you daughter very soon, I will have her in my thoughts.
  • I have undergone cervical fusion last April. But the pain and the recovery was the hardest moment of my life. My mom and sis plus hubby always want to take the pain if they could.
    Staying in good mood is really crucial for both patients and caretaker.
    Not sure if a recliner may help.
    Infrared light may help blood circulation
    Bone growth stimulator may help
    Just my two cents
  • Thank you for posting! I was wondering about you and your little girl.
    I don't know much, I'm just a spiney like the rest, but I do have nerve pain and I did have problems finding a comfortable spot for a very long time. Sleeping has been hell.

    First of all, even though you're living it and she's living it and the whole family is living it, you're in it together. She has someone to lean on. Thank God. I have a son her age and this is number one.

    Number 2. Relief and sleep.
    I'd try the 100 things to relax her: Warm salt baths, heat/ice packs. Aromatherapy, hug a tree. Try all of them. I soaked in a salt tub and slept three hours extra so I'm not above trying anything anymore.

    Maybe look at sleep aids with her doctors. I'm thinking it may help me too. Pain meds aren't my solution but they may help her if looked into carefully with the right goal in mind.

    tons of pillows, some of which are fun may help in propping her and getting her to sleep. Keep a journal and maybe make it fun with telling the story of what makes her comfy. When you find something that works, celebrate!

    Keep trying and keep your chin up Mamma! I'm rooting for you.
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