Shit. shit. shit. shit. shit.
I couldn’t change that one word that was looping around in my mind. Tears streamed down my face as I pushed a happy and oblivious Mary Elizabeth out of the building in her wheelchair. She giggled and squealed at the birds chirping by our car as I loaded her into her car seat. Seth texted me again. “How’d it go?”
I couldn’t call him yet. I tried to wipe my eyes and blow my nose so I could drive. I just wanted to go.
I noticed ME pulling her right leg up and avoiding bearing weight on it a few weeks ago. Her OT also noticed. She asked me when I noticed that her left leg was longer than her right leg. Yesterday. And at that moment I knew in my gut it was bad.
Two weeks later my fears were confirmed in that doctor’s office. Her right hip is partially sublexed (pulled out of socket). It needs surgery. The surgery will be invasive and long and extremely painful, the orthopaedist says. It will require a body brace for 3 months after. It is better than the other surgery, which will be necessary if she actually dislocates her hip. Shit. I start crying quietly in the doctor’s office. He starts backing away from me slowly. Asks his nurse to get me a tissue. He leaves the room quickly, and the nurse gives me an awkward hug. Crap. I try my best to not do this….I like to remain in control and one step ahead of the doctors. I have never heard of this SLOB surgery. I have no idea what he is talking about. I wish Seth were here. He would ask the right questions. I am still stuck on invasive and very painful.
My mind dares to venture back to when ME was little and had her gtube surgery. It was one of the worst 48 hours in my life. ME had so much trouble with the pain. She howled like a wild animal…then moaned like an injured cat. Then just made this horrible humming noise that began in her gut and was the saddest sound….over and over and over. I cannot do that again. She cannot do that again. And that was just an easy procedure – most kids are in and out and feeling like new after a few days. It took my baby a month to not whimper when we touched her. This is a much bigger surgery. It will require a minimum of 4 days inpatient afterwards. I try not to think about it.
I feel like I have been hit by a truck. It literally came out of nowhere. Why didn’t I see it?
This ruins all our plans, I think. What is a SLOB anyway?
To be continued…
Ok – I’m back and feeling much more positive about this surgery for ME. A SLOB (or Summit Shelf) is a hip surgery designed to prevent further subluxation of the hips. Imagine the femur and hip as a ball in a baseball glove. ME’s femur (the ball) is pulling out of the glove (hip socket) towards the fingers part of the mitt. This procedure lengthens the fingers of the glove so that the ball cannot continue to slide out. This website does an in depth explanation of this surgery and how it came to be (as a preventative procedure…with the hopes of avoiding the scarier hip surgery called a VRO).
ME’s surgery is scheduled for April 20th – 2 weeks from now. I am busy getting prepared…ordering the big brace she will wear for 3 months after, talking to the PICU nurse at UTMB in Galveston (where her doc, Dr. Yngve, will be performing the 6 hour procedure) about their protocol, preparing Ben emotionally for this (he is very worried and anxious), and basically trying to center myself…take deep breaths and relax in the peace of knowing God is good. ME will be in the PICU for 2 days after her surgery then will be inpatient on a regular floor for another 2-3 days. She will be in a brace that will prevent her from moving her hips and legs (an immobilizer) for 3 months after. She will have 4 inch scars on both hips.
After the initial shock of the news, I did experience a certainty and sense of peace about what is to come. I am thankful for this blessing while I struggle with my emotions of anxiety and fear and failure (which I know logically is silly, but I can’t help but feel like I didn’t “save” ME from this…like I should’ve prevented this from happening somehow. I know it’s not true, but I still have that feeling every now and then). For the longest time I struggled with the fear of ME getting sick and not being strong enough to fight it. I am over that. I know my girl is strong and healthy and will make it through this. I am afraid of the pain for her…of her retreating back into her own world b/c of the trauma and pain of this surgery. Of having to watch her cry and suffer and not be able to do anything about it. It is a common fear for all moms, and I am no exception. But as One of ME’s current therapists told me yesterday, “You’ll be fine. You can do this. Period.” She said it with such certainty that I think I may believe her. (I love how God puts those people right where I need them to say exactly what I need to hear)
So I am asking all of ME’s team – all of our wonderful friends and family and people we love to pray for Mary Elizabeth and for our family. Please pray for ME to stay healthy and to stay strong. Pray for her to make it through the surgery without any complications. Pray for her pain to be managed appropriately and effectively…for her spirit to remain strong and intact despite the pain and long recovery (my sister said that nothing can break my girl in three days…which is supposedly the hardest part of the procedure…pray that she is right!).
Please pray for our family – for Seth and Ben and I to remain positive and strong for ME. Pray for our fears and worries and anxieties to be given to God…for that sense of peace and calm that only comes from Him to be very present throughout this challenge.
Pray for ME’s Doctor, Dr. Yngve, and his surgical nurses and the nurses and staff at UTMB – for them to be at their very best when dealing with ME and for them to be competent and compassionate with Mary Elizabeth’s care.
Thanks y’all. We love you.