A Sliver of Hope

WOW! I still can’t believe we raised over $5,000 for Bello Machre. Thanks to all of you who donated and supported us for the walk.

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Catherine and Sarah after the walk.

Catherine will use the money to help with surgery expenses that are upcoming. She’s getting ready to have a pretty major surgery and I’ve had a hard time dealing with it, frankly. For a long time, I didn’t even talk about it. Then, I talked too much about it and was too cavalier. Now, I am trying to deal with the logistics on top of the extraordinary stress of thinking about just what a big deal this surgery actually is.

Don’t get me wrong. She’ll be in great hands with Dr. Freeman Miller at AI DuPont Hospital for Children. He’s among the best, if not the best, in the world. In fact, we asked a knowing doc at Hopkins if we should consider someone there for another opinion or as an alternate provider and he shook his head immediately and said, “No. Go there. You’ll be in great hands – he’s the best.” I’ll let that doc remain anonymous because if you know anything about Hopkins, you know they never refer out of their system. Even US News and World Report cites the accolades of the orthopedic group at AI duPont and ranks them #5 in the country. That’s all comforting.

But this is a big surgery. Catherine’s spine is curved 78 degrees so Dr. Miller will straighten it and will use a rod to hold it straight.

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See the marker at the 78 degree turn.

 

It really hit me when our therapist said, “Well, let’s do a lot of ball work because she won’t be able to do much after surgery.”

“You mean while she heals?” I asked.

“Well, no. She’ll not be able to bend over the ball after the surgery. Her spine will be stiff.”

Ugh! So, my snuggly little girl won’t be so snuggly anymore. The one who has cuddled up to my skin and Brian’s chest since she was 3 days old will sit erect. I’m sure we’ll find a way – some odd way – to hold her so we can snuggle together. It just won’t be the same. Actually, after every big event for Catherine – it’s never the same.

Her spine is not just curved side-to-side. It’s also curved front to back. In fact, we found out just how severe it was when we thought we felt poop blocked in her intestines. Unfortunately, she got the wrong end of all the treatments to try to fix that before we had an x-ray in the ER and they finally said, “What you feel through her belly is her spine.” Yowzie. I literally didn’t believe it. When we went to see Dr. Miller, he immediately confirmed it.

CSpineSide
You can see how much her spine is curving forward making her whole pelvis tip severely.

Hopefully though, we’ll get the results a friend’s son got. Hopefully Catherine will breathe better and get less seizures and not be in the pain she seems to be in now. And hopefully her organs will spread out  and grow correctly and enable her to thrive. I even think that if a rod is holding her spine straight then maybe she’ll be able to hold her head upright, too. I figure it’s possible and a girl’s gotta dream – especially in the face of this particular surgery. So, despite the laundry list of things this surgery will bring – all in some weird rule of “fives” – through some grace of God I find a tiny ray of hope. I’ll confess though. It’s really tiny.

She’ll be on the table for 5 hours. She’s expected to need 5 pints of blood. We’ve been told to plan on 5 days in the ICU (what surgery requires FIVE days in the ICU anymore?) and then another 5 days in the regular hospital. Our surgeon told us it’s the equivalent of an adult going through open heart quadruple bypass surgery. Yeah, it’s sort of a big deal. I’ll be hanging onto that sliver of hope picturing my little girl sitting straight and maybe even holding up her head.

And like everything in Catherine’s world since the day she was born, oh so small. We’ll sit in the waiting room in a few weeks, and we’ll just have to wait and see.

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6 Comments

  1. WOW, Ellen…that is a lot to handle…I will be praying for all of you as Catherine’s surgery date approaches…and continue to take comfort in that sliver of hope….you are her mom and her hero…your faith and love for each other will keep you going…one…day..at..a..time..as you continue to…wait..and..see…blessings!!!!

  2. This sounds like quite a challenge for all of you, especially Catherine. I have a friend who just a year ago, at age 72, had similar surgery. It wasn’t offered when she was a child, and has only been a possibility in the last few years. She is 3″ taller that she has ever been and looks wonderful. She is so glad she had it done. Prayers coming your way.

  3. I want to wish you much luck with the surgery and recovery. My daughter had the same surgery last Sept. and it weighed heavily on my mind for a long time. I have to say I was amazed at how seamless the surgery and recovery were. Don’t get me wrong there were certainly adjustments but all considered made me wish I hadn’t fretted so much. I did have nightmares that someone would try to pick her up under her arms by mistake for months afterward and was constantly reminding everyone not to do that!

    I hope you find that your hospital is like ours and has handled so many of these surgeries that they have it down really really well. The hardest part for me was ICU after for a day or two and she did have more seizures and required extra meds for that following surgery for the first day.

    Love and blessings to you and your sweet girl from me and mine!

  4. El- Thinking of you this week and sending positive thoughts your way. Know that you have a huge support network behind you and lots of people praying for you.

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