A few months ago Boo began serious toe-walking. She could be a contender for the Boston Ballet. It was concerning because this is also a serious sign that her spinal cord had retethered. The neurourologist (yes there is such a thing) and the neurologist told me to call the neurosurgeon ASAP.
Like today.
I was floored. I was told that there was a slim chance Boo would need further surgery. I admit it, I broke. A little. Okay, a lot. Then I called the neurosurgeon and asked for an MRI. I was told that she had to be seen by him first.
And this ladies and gentleman is why healthcare is so expensive. But that is a rant for a different day. We finally got an appointment with the neurosurgeon who told me that there was a ZERO percent chance his surgery resulted in a retether. Since I really do not care for the man I doubted him (gasp!) and explained the MRI was a non-invasive procedure. That although she would need to be sedated and there were risks associated with that sedation there was more of a risk that if her cord remained tethered we would be facing nerve-loss, muscle loss and a host of other scary things. So order the test.
I won or he conceded just to get me out of his office. Either way Boo got her MRI. Unfortunately for her it was scheduled for 2 pm and she could not eat after midnight. Then her test was postponed until 4:30 pm. Most adults I know would not be able to go 20+ hours without eating. In solidarity I did not eat either. I was crankier.
Boo was a trooper. She didn't cry at all. That is until the first IV attempt failed. And the second IV attempt while successful was a tad traumatic. Once medicated she fell asleep mid-scream.
She woke up in mid-scream. It was the first time she was terrified of a nurse. I don't know who was more heartbroken, her nurse or her. The nurses at Children's are simply the best. They gave her what comfort they could (me) and kept her safe. Boo calmed down, we went home and waited to hear from neurosurgery.
And waited.
Tired of waiting I called and found out that I was wrong. The neurosurgeon was right. HIS surgery didn't result in a retether. She will need to see orthopedics and do more stretching.
But Boo doesn't need more surgery. So he can be right and I will take the hit.
Because she doesn't need more surgery. Best end of summer news ever.
Aw, poor Boo. I'm glad you did get some good news, though.
ReplyDeleteUgh -- I can relate to failed IV attempts all too well, but you're right, she's a trooper!! I love that the nurses were so understanding though! Once, I woke up from a surgery hypothermic and so cold that I was unable to speak, and the nurse just stared at me and said, "I don't know what to do," until someone else stepped in. Good nurses make all the difference!
ReplyDeleteLOVE LOVE LOVE that she doesn't need more surgery!! And her smile in that last picture put a smile on my face. She is too cute!
That's why she is covered in blankets :) She lost her core body temp during the MRI so they had to "reheat" her.
DeleteAww, poor little trooper! I am sooooooooooo happy about the "no surgery" news! I agree with K, that last pic is adorable!
ReplyDeleteOh what a hard day. I'm happy that day is over and behind you and I'm also supportive that you pushed for the MRI - this is what you have to know, *know.*
ReplyDeleteIn other news - I always walked on my toes as a girl. I don't know why. I just did until I didn't. :)
My youngest niece did as well. And she's 100% typical! Some kids just do!
DeleteI am so glad that I am not the only person who thinks that neurosurgeon's are a different breed all on their own. I am glad that you were wrong but I hope you can find something to help her!
ReplyDeleteCome visit at Prematuritywithlove.blogspot.com
This is awesome Kerri, I am so glad she does not need another surgery!! I am sure PT will be able to help her! Happy to read this! xo
ReplyDeleteWhat a trooper. SO glad she does not need more surgery and good for you for standing your ground with the Dr.
ReplyDeleteI would be happy to be wrong, too. Plus, having the MRI and being sure is way better than 20 therapy sessions dealing with worry. Well done Mom!
ReplyDeleteYAYYY for no more surgery! Poor Boo though - she's a serious trooper. Love.
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