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.
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.
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.
|TBT, blog style|
(Originally posted 10-AUG-2012)
A year ago today Boo had surgery to release a tethered spinal cord. I will never forget how this one thing devastated me. All her other health crisises were just that, a crisis. I had to keep calm, carry on and be the rock for not only Boo but for every other family member too.
But this, it just took the rug out from underneath me. I am still not sure why. I remember when GI (of all specialities) wanted to do the MRI of the spine to see if, by slim chance, Boo had a tethered cord. Her doc had recently been to a conference where they found that children who have extreme bowel issues ended up having an undiagnosed tethering. For some reason (medical, beyond me) the nerve endings interfered with the bowels.
Since Boo had to be sedated anyway, I e-mailed all the docs and asked if anyone else wanted something done to schedule it for the same day. Neurology decided to rescan her brain to see if there was any change to the corpus callosum (the white matter in between your gray matter, Boo’s was too thin).
Since we were told that the corpus callosum could not ‘grow back’ I expected to hear that Boo’s brain still showed evidence of a lack of CC. I figured the spine MRI would be fine.
I couldn’t have been more unprepared.
The brain MRI showed that the corpus callosum had completely grown in. That it was, for lack of better terminology, perfect. BUT the spine MRI showed a tethered chord and she would need surgery.
Here was the kicker, unlike all the other crisises, the decision for surgery was up to me. Not the neurosurgeon (whom I despised) that went to an actual medical school, but me. The mom. The one without a medical degree. Sure it was up to husband, too. But let’s face it, this was a decision that I had to make.
We were told that the tethering was “POSSIBLY” affecting her bowels but they didn’t know for sure. What they did know was between now and when she was in her late teens she would most “PROBABLY” need to have the surgery. It was up to me to decide when and if. That the surgery was “no big deal” he did it all the time. (yup, I still dislike him) I replied that he didn’t operate on MY daughter’s spine every day of the week and this was major surgery for her, if not for him.
Hello, can I say again that I do not have a medical degree?
Since I (inappropriately) despised the neurosurgeon we met, I got a second opinion at another hospital. Where, I basically got the same diagnosis. However Doctor #2 felt that the tethering was more severe than what doctor #1 thought. She said that if it was her daughter she would do the surgery sooner rather than later. She went in to all the risks associated with waiting. She emphasized with how hard the decision was to make. I loved her.
But off we went to our local Pedi for his opinion. He told us that when the number one doc in the country tells you your daughter needs surgery you don’t go against his recommendation. And as much as I loved doctor #2, our pedi (correctly) felt that since Boo’s 13 other doctors were at hospital #1 we should stick with doctor #1. Because in the case of Boo, if something can go wrong it will.
I went home and broke. Literally fell to the floor and broke.
That was when I learned how strong and how much I depend on my BFF, Tia. She let me break and was strong enough to carry me through the hardest (at the time) decision. It was then that I realized that without my ‘village’ life with Boo is impossible.
I decided to do the surgery sooner rather than later. I felt that the pain would be more easily managed, that because she would have to stay flat in bed it would be easier to do at 2.9 than 18 years. That if something went wrong, I would rather have her not know. My rationale was Boo had just started walking independently that week. If she was unable to go back to walking afterwards, in my mind, it would be better not to have walked. I was probably wrong in all of these thoughts. But they were mine, honest and true.
So a year ago, on August 10th Boo had spinal surgery.
She made a speedy recovery. On day 2 of laying flat, the minute she was allowed to sit up, she did. And promptly tried to break out of the crib. She loved the Princess Carriage (I put in a lot of miles walking the halls).
So, Doctor #1 was right. The surgery went fine. He was wrong about some things. Turns out that Doctor #2 was right, the tethering was much more severe than he thought. The surgery lasted much longer and was not as “quick and easy” as he thought it would be.
The nurses at Children’s Hospital Boston are simply the best. Not only did they not let doctor #1 discharge her when he wanted at post-op day 2. They went over his head to keep her to post-op day 3 as per protocol and she was beyond constipated. They were loving, supportive and thought of everything. Even her bandage!
The surgery also did NOT fix her bowel issues. Although she did grow an inch, so while she is still “short” she is growing. Hey, I take my side benefits where I can. I still cannot stand him, but my daughter can still walk so it’s all good.
The surgery went so well, in fact, that as soon as we got home Boo was climbing on top of my kitchen table. The next week she fell down the stairs and gave herself a nice concussion. But the spine was fine.
And so was Boo. We survived not only the surgery but the experience. I will never forget how happy I was to be discharged from the hospital. I will never forget how when I needed strength Tia was there.
I will never forget that it okay to break once in a while. As long as I have Tia.
I’m semi-participating in a Summer Blog Hop Challenge meant to show others how the life with a disability, or with a child who has a disability, is a journey. A never ending one, for sure. But a journey filled with triumphs and some tears. Of course per my usual
stick– to-break-the-rules reputation instead of starting in week 1 it is now week 3. So today we are starting the journey half-way through with a letter to myself. Even though that was week 2’s prompt
Dear Younger Me,
I was going to write to the much younger us. The one who is upset because our first love left us. Or the one who just met David and thought um….not my type but sure let’s go to dinner. To the younger us who on the eve of her wedding and asked David to elope instead. Or to the new mom to Abby who was scared out of her mind at this thing that wouldn’t stop crying and tell you eventually she would no longer seem breakable.
Instead I am writing this for you to receive after Boo’s birth. She is now four months old and you are thinking Holy Crap not only did I just get puked on from my neck to my toes I am getting a letter from the future. You are also thinking I’m writing to give you good news except you know us by now and realize maybe not.
First I want to tell you that Boo will survive. You can cry and breathe and rejoice. Now the other shoe dropping on your head is me telling you she will survive but it will not be easy. I am not writing to tell you what will happen. Because no matter what I write it either won’t change things or worse give you the magic answer you are looking form. Rather I write this to the mom of four-month old Boo to give you some advice.
Now you know it is really me, right?
Well here it is:
Never listen to a doctor, a nurse, therapist or school teacher that Boo cannot do something. There will be a doctor or two you will want to punch in the nose, but you will refrain from harming them.
Pay no attention to someone who says that Boo is just like their daughter/son/grandchild and “will grow out of it”.
Never give up hope. In yourself or in Boo.
Do not ever, for one minute, stop searching for an answer. Do not listen to the doctor who says just accept Boo for who she is. It is too important. You and she need the answers and being an unknown neurological syndrome is not an answer.
Keep Early Intervention. As awful as it is you will need them when she is three. But do not listen to them when they say she does not need Spaulding Center for Children. You are right they are wrong and they will deal with being offended.
As much as you have to fight to make Boo all she can be, you will spend more time loving her than fighting for her. She will impact not just your life but those around her. Boo is making a difference in this world one smile at a time. You just have to get through the what seems to be unending puke phase. But I promise it does end.
You know all the friends that say “let me know if I can help”? Here’s the thing they WANT to help. You have to TELL them how. Instead of waiting for them to call you, call them. Say I just need someone to come over and sit with me. Call them and say David’s home do you want to go to the canal with me. Call them and say I’m drowning and just need a friend. Cry and laugh with them. You will be amazed at the support just waiting for you. Your future self knows she waited way too long to reach out. Once you do life will become so much easier and less lonely.
Remember that David is there and he is your partner in this unexpected life. Don’t wait so long to include him in Boo’s therapies (yes, there is more than one). You will be amazed at how well he does.
Lastly, give yourself a break. You are allowed to feel tired and overwhelmed. You are entitled to feel like this just isn’t fair. I promise you that this life becomes easier. You will one day brush your teeth before dinner time. You will one day wear a shirt without Boo’s remains on it. You will be amazed at her journey.
I won’t spoil the good parts for you. Be prepared to be amazed.
Older (but less tired) Me
PS–oh and don’t worry you will not cave and buy Abby a pony.
Last year our family kicked off the NSTAR Walk For Children’s Hospital in Boston.
We have walked every year since Boo was discharged from the NICU. Last year, over 25 of our closest friends and family joined us.
We walk to thank everyone from the doctor to the nurse to the technician to the janitor how makes every visit as painless and comfortable as possible.We walk for the parents who are scared out of their souls that their child is in pain. We walk for the children who cannot.
|Boo in 2011 Walking across the finish line|
I am asking everyone to join me this year in supporting the hospital that saved Boo’s life. Not once, not twice but every time.
If everyone who reads this post donates as little as $10 you will make an impact on a child’s life. Click here to donate
Please consider sharing via Twitter and Facebook.
I thank you. Boo thanks you. Her Brigade will be thinking of all of you when we walk together on June 8th.
I have written before (insert too much!) about the importance of creating a village of support when you have a child with special needs. Heck, even with a typical child a support system should be included with every birth certificate.
I began running in earnest about a year ago. I ran to get away from the stress of just, well, everything. Taking 20-odd minutes to focus on nothing but breathing and trying not to trip in public. It wasn’t always pretty, but I finally found my rhythm. I managed to avoid eating any more bugs and discovered the joy of
tripping running in the woods.
My friend’s daughter is a buddy. Her runner sends not just the child, but the family encouragement and emotional support to get through days that can be overwhelming. In return, my friend’s daughter provides a smile, unconditional love and gratitude that someone out there care enough to run with her spirit. She also provides the runner with a reason to get out there and run when it would be easier to hit the snooze button.
Thus, a new village was created for my friend.
Here’s the thing though, not enough special families know about the program. There are over 3,000 runners looking for their buddy! Buddies are those with physical or mental handicaps. Persons of all ages who are willing to be the inspiration for the runners.
If you are in need of a village, of some support or you are just looking for a way to inspire someone, please consider signing up your child or adult with special needs to be matched. Follow this link: http://www.whoirun4.com/match-me/ to find out more information. There is no cost to join, for the runner or the buddy.
The runners are waiting to be a part of your village. Are you ready to be part of theirs?
The nicest thing some one ever did for me was to be my village and allow me to pay it forward.
And that is how I finished the sentence, the nicest thing some one ever did for me was….