FEBRUARY 1, 2017 - NOT WHAT WE EXPECTED
7:29 AM
FEBRUARY 20, 2017
This is what I shared on my personal Facebook Page the night we got home from our visit with the doctor at Phoenix Children's Hospital.
This is what I shared on my personal Facebook Page the night we got home from our visit with the doctor at Phoenix Children's Hospital.
Sitting here in bed tonight. Just put the kids all to bed and my mind won't stop.
Today we went to Childrens hospital of Phoenix to what we thought would be an easy appointment. We thought we would tell the doctor we want to go with surgery, schedule it and come home.
The doctor asked me dozens and dozens of time if we were sure on surgery. He really was hoping we were going to choose amputation. He put all his arguments out there in the table for us to hear. Begged us to at least meet with the amputation team. We said no he wanted the surgery. He was highly disappointed.
Then he started talking about what life will be like for our almost 12 year old with the surgery option. He would have surgery to attatch this device to his leg and ankle. It goes through his skin and screws into his bones. He would wear this for 4-5 months while in a wheelchair because he could not put any weight on it during this time. They would teach us how to adjust it at home and with each adjustment it would physically move his bones. He would most likely be in pain medication during this time because it could cause bone spurs in the knee and such.
He would have appointments every two weeks at first to check on this and X-rays to make sure it was working the way they wanted it to. After that check ups every 4 weeks.
There's a possibility that there could get infection in there so he'd also be on antibiotics if that happened.
He'd. We'd to be homeschooled the doctor said because he'd miss a lot of school.
After the 5 or so months then another surgery would be done to put the foot into the permanent position they wanted it.
Then another surgery in time to lengthen the shorter leg.
Then another surgery to give more stability in his knee
Another surgery to work on his hips.
And the list goes on as he grows just like before from all his other surgeries.
From the time he'd get the device out on his leg and move his bones and then the surgery following right after that he's looking at a year of non ability to even walk.
So much to take in and process!
Little Jacob was adimit he only wanted surgery.
Talking more with him he's decided he wants to meet with the amputation team and I am going to see if they can arrange for him to meet a child around his age with a prosthetic leg or foot. Jacob knows someone at work with a daughter with a prosthetic arm and he's going to arrange for her to talk to Jacob as well.
He's more open to this possibility because although he was so sure he wanted the surgery it's a long and involved process that honestly may not change a single thing about his foot in the end. It may be the exact same. It may get worse there are no answers to that
The doctor told us that with the amputation he would have full ability in his foot which he's never had his entire life.
In the end it's all about little Jacobs quality of life.
Daddy Jacob said exactly what my heart has been thinking for so long. When does the suffering end for him. He has surgery ok but he's in pain for so long to gain what. 5% more movement in his foot? Or none. We don't know. When does it end for him. When? So maybe the best option is amputation because it makes the overall suffering and pain so much less for him.
Please keep our little Jacob in your prayers because this is more than our mom and dad hearts can handle so I can only imagine how our 12 year old is dealing inside with all of this!
He is and always will be my hero and the bravest person I know!
~Nicole
~Nicole
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