Finding the Silver Linings of Early Onset Scoliosis

Let’s be real, of course there isn’t a single one of us who has dealt with an early onset scoliosis diagnosis and has said ‘well I’m glad we got this diagnosis’. No, not at all.   It’s physically, emotionally and can even be financially challenging.  It’s scary and hard and that’s just touching the surface. The unknowns, the casting, the OR visits, the anesthesia, the surgeries, the stress around living with a child in a cast, the waiting, knowing that for many this can really be life threatening, . … it IS too much and you can’t understand what it is like unless you’ve been through it.

But we all have a choice in how we respond to it all. I’ve seen people choose to be angry, bitter and refuse to see outside their own child’s case and realize they are pretty lucky in the grand scheme of things. And I’ve seen those who have children with some of the toughest and hardest cases I have ever seen and they choose to do good and find the positive pieces in it all.  That’s not saying everyday is or should be filled with sunshine, rainbows and unicorns. Because it’s not.  It’s not easy and some days the choice is to be angry. But it’s what you choose most of the time that’s important.

For me, I tried to find the positives. Life is a gift. All of it is a gift. The good the bad, the pretty the ugly, it’s all incredible.  Sure it’s easy for me to say this, since we have made it over most of the difficult hurdles (hopefully). But I decided early on that at the end of the day I had to choose to find the hope, the positives, the sunshine more often than the clouds of gray and the anger.

There are some real bright sides that I choose to focus on and how my life has changed positively.

1. I’m much more compassionate. I think I was a compassionate person before but now it’s on a whole new level. I’m much more in tune with and feel for kids and parents suffering with medical challenges.  I’m an advocate, an activist, someone who wants to be involved and find ways to make positive changes, big and small.

2. I got 5 or so Christmases every year. Almost two years of cast life was not fun, but it wasn’t all bad. I’ve always said cast removal day was like Christmas morning. The anticipation, the pure joy of all the fun ahead once the cast is off. Seeing her happy face as she enbraced her own body.  And the hugs, the hugs!  I can’t tell you how amazing it feels to hug your child for the first time in two months without a body cast in the way.  All of it is just magical.

3. New memories I wouldn’t have had otherwise – Cast breaks afforded us the opportunity to relish in baths, swimming, sand boxes, messy crafts, mud… you name it. When you haven’t been able to do something that’s such a basic a part of life, you cherish it when you finally are able to.  I guarantee I have far more incredible memories of my daughter in the tub than my friends who bathed their kids daily.

4.  New friends – I’ve been fortunate to make many new modern day pen pals. Friends I have made in support groups through Facebook. It might seem cheesy and pathetic in some ways, but we have bonded in ways my other friends simply can’t. I have an incredible support team behind me online. I’ve been fortunate enough to meet some of them in person too.

5. Sense of purpose – When we started this journey and diagnosis these support groups on facebook were really just starting out and the information I found the web was limited and misleading.  I’ve watched the members of our support groups double and some even triple in the time I’ve been there. I’ve heard hundreds, if not a thousand stories from parents just getting a diagnosis or updates from those who have been at this a long time.  It’s rewarding to know the knowledge I have gained and the work I do has calmed the fears of many, helped guide parents to the right doctors, and helped them find the research they needed to make important decisions.

And when I look at what this crummy diagnosis has given my daughter sometimes the silver lining are just right there, clear as day to see when I see how she responds to the world.

Empathy – How incredible is it that I can say my five year old has a great deal of empathy? Empathy is a life skill that frankly I think as a whole lot of us adults have not learned.  I don’t think she would have learned this skill without going through everything she has.

Comfortable Being Uncomfortable – Spend almost two years in a body cast and I think it’s fair to say you’ve learned how to be comfortable being uncomfortable. Life throws lots of uncomfortable circumstances at us….the economy seating on a crowded airplane that’s been sitting on the tarmac for an hour with no air conditioning on a 95 degree day, the painstaking small talk that’s going nowhere at a party,  awkward conversations on politics or race. You get the picture. But many will tell you one of the keys to success in life is finding a way to be comfortable while being uncomfortable.

Understanding Life Isn’t Fair – She couldn’t swim or spend long periods of time out in the heat in the summer when she was in a cast.  My daughter can’t go on a trampoline now. Do you know how many kids have trampolines in their backyards? They are everywhere and boy I’d love to let her go, they are fun and nothing wears a kid out more than jumping on a trampoline.  But she can’t. And yes it’s hard at times, but this is life, there will always be things we can’t do in life for a whole number of reasons.  It’s another hard one but these are teaching opportunities.  This is up to us as parents in how we approach these things with our kids, teaching our kids that they are not alone and we all face things we can not do or be a part of is just another life lesson that’s bound to help them grow into thoughtful and caring humans.

Patience – Oh patience,  it’s fair to say patience is still not my strong suit. Just ask my husband… but it’s getting better…I think.   Still, my five year old has patience down better than I do at times. Could it just be how she’s wired? Maybe.  But I also know she’s had no choice but to be patient in situations she didn’t want to. Like doctors appointments, scary X-rays, weird diagnostic tests, sponge baths and hair washing in a sink. Let me tell you, sink hair washing is scary for just about all infants and toddlers. But she had to find a way to do it all with some patience.

Duck Tape Collection – You do two years of serial casting you are bound to end up with a pretty sweet duck tape collection.  And have you seen all the Pinterest crafts you can do with duck tape? Tell me that isn’t a positive.

bright side

 

 

Think you know scoliosis? Think again. This is what complex forms of scoliosis can be like.

Today is Rare Disease Day. Chances are you didn’t even know this day existed. The main purpose of this day is to raise awareness in the general public and decision-makers about rare diseases and their impact on patient’s lives.

So today I’m writing to bring attention to the rare forms of Early Onset Scoliosis and Thoracic Insufficiency Syndrome (TIS).  These complex forms can be hard to understand how difficult they can be and what kind of impact they can have on a child and a family, so imagine with me if you will…

– imagine your child having to wear a tight, hard plastic back brace covering his whole torso for 20 hours a day….every day…for eight to ten YEARS

– imagine your child living with real back pain every single day for what may be her entire life.

– imagine your child enduring years and years of painful spine surgeries aimed at just trying to keep a relentless spine from crushing her lungs and heart as she grows.

– imagine the large protruding and very visible rods and hardware in your child’s back actually breaking. Imagine a massive internal infection growing inside his body making him very sick. Imagine both of those issues requiring more surgeries, more scar tissue and making his skin worn so thin in areas he becomes even more susceptible to infections and skin problems.

– imagine your child having to wear a non-removable cast covering her torso.  These casts are applied in the OR under anesthesia. They are changed out every 2-4 months.  Imagine having to do this for years and years.

– imagine your child enduring these surgeries, aimed at protecting her lungs,  but they don’t work enough at keeping her relentless spine at bay and it continues to bend and twist. And now your child has to be on oxygen for the rest of her life because her spine and chest wall has limited the development of her lungs.

– imagine your child’s spine continues to impact his lungs and nerves in his body and he ends up wheelchair bound, for the rest of his life.

– imagine your five year old not being able to get the life saving spine and chest wall surgery she needs in time and she dies because her spine ultimately crushed her lungs.

-Imagine your child’s scoliosis is a result of another complex and rare underlining condition that you don’t have a lot of treatment options or answers to because you have so many other medical issues to deal with 

-imagine your child enduring spine surgeries, back braces, halo traction, living on oxygen, and being wheelchair bound for years but still dying an early age

-imagine the emotional and social toll all this can have on a child. Imagine how mean kids can be.

These are all things I see happen. All of them. I’ve seen numerous examples of all of these “imagine statements” in just the last few months. Last few months, not years. Many of these daily.  Of course death is rare, thanks to modern medicine but it still happens. And despite the medical advancements early death still happens for some.

My life changed when I got my daughter’s diagnosis and the years since my need to learn and know more about a disease with many unknowns has lead me to so many families, new friends, and kids who are fighting battles significantly harder than what my own child has gone through. Their stories, their hardships, their successes, their happiness and their tears have changed my life just as Nora’s diagnosis has.  In fact, their stories are what has probably driven me more. Because their stories could have been my daughter’s story too.

You see, before Nora’s diagnosis, I had no idea how scary and life changing something that sounded so simple could be.

Scoliosis.

I don’t like that word, at all, because too many people believe it to be a minor condition and are quick to dismiss it. What I’m talking about are these rare forms that are anything but minor.

You don’t see commercials with big stars raising awareness and money for this disease or the hospitals that specialize in treating it.  There aren’t telethons or national 5k walks. Most people have no idea the green ribbon is for scoliosis awareness. But if you saw what I have seen, heard the stories I have heard, seen the tears stream down the faces of parents and kids, heard the cries of frustration, anger and the fear of the unknown you would be moved as much as I am.

Of course I would love to see anyone reading this or anyone who has followed my blog to donate to an organization dedicated to fighting this disease or helping families afflicted with it.  I would be thrilled with that. But I know how and where people donate is very personal and let’s face it there are zillions of worthy causes.

So Here Is What My Ultimate Hope Is:

1.  I hope on this year’s rare disease day you find a rare disease that speaks to you and make a donation to an organization dedicated to that disease. Visit the National Organization for Rare Disorders to learn more or make a donation here: http://bit.ly/2lQdQW4

Even though the U.S. spends $29 billion each year on medical research, thousands of diseases simply fall through the cracks. They don’t have celebrity endorsers, are burdened with tongue-twisting names or fall outside of popular research fads. As a result, far fewer federal dollars flow to researchers in these areas. BUT…

Rare disease affects between 25-30 million people in the United States.

One in 10 Americans is living with a rare disease.
Children represent the vast majority of those afflicted with rare disease

Only 5% of rare diseases have treatments 

Research on rare diseases can often lead to advances in our understanding
of common diseases such as cancer, heart disease, diabetes,
stroke and other major health problems

As a whole, rare diseases represent a large medical challenge.
Combine this with the lack of financial incentives to treat or cure rare diseases,
and a serious public health issue is created

2. I hope my blog, my words, builds awareness and continues to help others out there all around the world. You can help not just financially. Help spread the word, share the posts, and build awareness about early onset scoliosis (a.k.a. infantile scoliosis) and congenital scoliosis.

If you’d like to make a donation to an organization aimed to helping children with complex spine issues here are a few wonderful organizations.

Children’s Spine Foundation http://childrensspinefoundation.org/help.htm

Shriners Hospitals http://www.shrinershospitalsforchildren.org/donate

ISOP (Infantile Scoliosis Outreach Program) http://www.abilityconnectioncolorado.org/infantilescoliosis/

You can make a difference.  Be part of the change!

I dedicate this blog post in loving memory to:
Olivia  Montoya, Kendra Munoz, Dani Smith,
Caleb Carithers, Avalynn Walde & Kylie Lether

Preparing and Packing for Your Young Child’s Spinal Surgery –What We Did and What We Would Do Differently Now

It’s been a year since Nora’s spine surgery.  Time has flown by and she really is doing wonderfully.  Sometimes it’s easy to forget just all she went through for over half her life, she’s an active, funny and kind little four year old now.  Now the only daily reminder comes when she asks you to scratch her back, her hardware is still visible and easy to touch under her soft precious skin.   Other than that you really would have no idea.

Lately there have been a lot of families asking for tips and experiences around planning for their child’s spinal surgery.  There were a lot of great tips I learned and some things I’ve learned since then too that I think are very helpful. I’ve broken it down into categories below.

Preparation before Surgery and Meeting with your Child’s Surgical Team 

There’s no question, I truly respect, admire, trust and am utterly grateful to my daughter’s surgeon as well as his team.  We had several meetings and appointments before surgery and covered a lot, but there are a few things I wish I had asked or inquired about more.

Blood Transfusions
We knew going into this there was a good chance she would need a blood transfusion. Transfusions are not uncommon in spinal surgeries that require excisions (removal of vertebrae) of some type.  We knew this for a long time and had to fill out all sorts of paperwork beforehand.What I didn’t know was a transfusion might be needed post-op.  That’s also what happened with Nora.  She lost over a 1/3 of her blood during surgery.  Hearing that, I will admit, kinda freaked me out when I heard it.  She was struggling post-op to bounce back.  Her labs just were not showing improvement like they had hoped.  Three days post-op they ordered a transfusion.

Looking back, I wish I had asked more about this beforehand.  How do they determine the need for a transfusion in the OR, what’s borderline? If labs are questionable post-op how long and often are they monitored, what is the criteria to determine if a transfusion is needed?  I felt like we were in limbo each day she wasn’t improving and didn’t really know what all we were looking for to determine if she needed one or not.  I also didn’t know a transfusion takes hours.  In my mind it was something like it is on TV hospital dramas where they seem to pump it in right away.  Because of the risks involved in a transfusion, they do it very slowly, but still have to do it in a set time.  Kids are very closely monitored during that time too.  Fever spikes can happen and can impact the transfusion all together.

Post-Op Constipation
This is a subject no one really wants to talk about much and if you know me well, in general, I’m not one for “bathroom conversation” at all.. This was only briefly talked about at our pre-op meetings.  It was a subject folks in our online support groups didn’t touch on much either.  And yet, this was a HUGE issue and concern for us, and since then I’ve learned it is for many kids.We all know surgery puts the whole body, including the digestive system to sleep. The longer the surgery, the longer it takes to “wake up” the system.  Plus you have very strong narcotic pain meds in the system and they just so happen to have the nasty side effect of constipation.

Nora’s surgery was tough, she struggled post-op with some pain, low oxygen stats, low hematocrit, hemoglobin, etc – which lead to the need for the blood transfusion. All of these things combined and the fact that she was just barely three years old contributed to her refusing to eat much of anything for a few days.  Day one we got her to eat Popsicles and lots of juice and water but  that tapered off into the night and she just didn’t want anything… for days…not even her favorite foods.  It’s impossible to rationalize with a three year old and unfortunately her refusal to eat didn’t help the building constipation issue.  Mirilax and Colace are added to food and drinks to help with constipation, if we couldn’t get her to eat we really couldn’t get them in her system.  Plus fiber and fluids are key to helping but nothing was going in.

She was eventually so uncomfortable and in a good deal of pain from the constipation. A suppository didn’t help much and we had to resort to an enema, which also didn’t completely help.  Administering those to a tiny child in pain was downright awful to witness.  Then watching her deal with the pain, discomfort and confusion that goes hand-in-hand with the effects of those meds was one of the hardest things for me to watch during her recovery.  I was so not prepared for that.  Once we got through one long afternoon of dealing with those, I locked myself in the bathroom and cried into a towel so no one would hear me. It was that awful to see my little girl in so much pain.  We ended up having to do a few suppositories and enemas during our stay and even when we got home.

I have since learned, some surgeon’s prescribe stool softeners and other constipation meds for children to take BEFORE their surgery.  This is something I would recommend everyone ask about.  I’ve heard from several parents who believe this helped their child.

If your child can chew gum, be sure to bring sugarless gum to the hospital with you.  A study was done that showed spinal surgery patients who chewed sugarless gum several times a day post-op had bowel movements on average 30 hours before those who did not.  Nora didn’t know how to chew gum at the time, but looking back I might have taught her how to a few months before surgery.

Expectations
We were told we would most likely be in the hospital X number of days.  So in my mind, barring any major major complications – which I refused to think about-  we would be there X number of days.  I never considered complications that would be considered minor in the grand scheme of things.  Complications that would mean we would be there longer.  So I didn’t pack accordingly.  I didn’t pack enough cloths.  I tried to pack lightly as it was and was already low on things.  My advice is to plan on having two extra days worth of clothes with you.  It worked out for us, unfortunately Nora had vomited one of those last days all over me and herself, that was when I learned our hospital floor had a washer and dryer for families to use.

The Ice Machine Ice Pack Pad
Our hospital provided us with this awesome little cooler with a pad attachment that plugs in called an Ice Machine, simple enough . You can only get these things by prescription. They way they work is you fill the small little cooler with ice and water, plug the cord in and it has a long attachment to  a pad that’s about 12”x12”.  The pad was put under Nora’s back before she even left the OR.  It runs the cool ice to the pad and lasts for hours and hours.  You never have to move the child to put a new ice pack behind them and it’s super thin. It was a great help and it came home with us.  We used it for about a week post-op. I’ve learned not a lot of hospitals use these with our kiddos.  There’s no doubt it was a huge help for us, I highly recommend asking for one.


What to Pack for Your Hospital Stay:

Now is not the time to hone in on your light packing skills.  By all means don’t go crazy, but don’t aim for the bare minimum. It’s better to be overly prepared.

Snacks and drinks – Matt and I never left the hospital, in fact it was days before I really left the room. Matt only occasionally left the room and went to the cafeteria area, he really only went when he was on a mission to track something else down.  We had the ability to order (and pay for) food from the room service menu and that’s mainly what we did but it is still a limiting menu.  The coffee, drinks and snacks were minimal.  We had access to a kitchen on our floor that had a fridge, microwave, even a stove to use. Bring snacks and your favorite beverages.

If your child is a picky eater, check out the room service menu BEFORE your child’s surgery.  I was able to just call and someone emailed it to me.  I was glad I did, it helped me figure out some other foods, favorite food to bring with for her.  Granted she wasn’t into eating any of it, I’m still glad I brought it just in case.  They will want your child to try and drink a lot of fluids so if your child has a favorite beverage that the hospital doesn’t have, like Gatorade for example, bring it.

Lollipops and candy – I brought these for Nora to have and also used them as bribes and incentives.Lollipops also work very well as “chasers” following oral meds that have a terrible taste

Bedding – Blankets and pillows for yourself and well as your child. I mainly focused on bringing these things for Nora and figured Matt and I would just make do.  Hospital blankets tend to be stiffer and not as cozy as a favorite from home.  So I wish we would have brought a couple of nicer blankets.  Thankfully we had family who brought us some.   Our child’s hospital room was very nice actually and had a couch that pulled out into a small bed like thing.  We were advised it wasn’t the softest and most comfortable sleeping pad under and if we had camping sleep pads, we should bring them, so we did and that really helped.

Clothes for yourself, like I mentioned above, pack a couple days worth of extra clothes. As you would imagine bring comfy clothes.  Lounge clothes and sleepwear you are comfortable in and comfortable having strangers see you in.   Zip-up hoodies are great.  Many hospitals are cold. Our room was actually warm at times, but our stay was also during a week of close to 100 degree temperatures outside.  Slippers and/or comfortable slip-on shoes like Crocs are key.  You will want to bring a set or two of pj’s or comfy clothes for your child too, they might want to wear something other than the hospital gown. Nora wore the gown till the day she went home and was happy wearing a nightgown for the ride home.

Movies, Tablets/DVD Player– Our room had a TV, DVD player with a Playstation 3 so we brought DVDs. I didn’t bring a ton, but looking back I wish I brought more.  Toddlers are picky and suddenly she didn’t really want to watch any of her favorites.  After watching Charlottes’s Web three times in a row (granted she slept through much of it) she then only wanted to watch Mickey Mouse Club on the Tablet. We had to have it play season after season on repeat for something like 12 hours or more straight, through the night even it was just background sound for her. This is when I realized we needed an extension cord.  The battery would die and the only outlet to plug it in was not in an ideal place.  This is an odd one, but I’d pack an extension cord for sure.

ToysBring a few favorites, like stuffed animals, things that make your child feel safe and happy.  Then go to the dollar store or even toy store and buy a couple of news toys.  The cheap easy dollar store toys work well as quick and easy distractions if needed.  Your child might not be into them long, but that’s ok.  A lot of their recovery will involve doing things they don’t want to do, incentives and distractions really help.  A friend gave us this silly goofy little hamster thing, that rolls around on the floor says silly things and does silly things.  It was AWESOME because it was the one thing that got her to agree to stand up and take a couple of steps, which was all she could do, but it was that toy, nothing else.

Bubbles, pinwheels, kazoos, and party favors – these are key for helping a do their respiratory exercises that they have to do to get their lungs functionally fully again after being intubated for a long surgery.

Toiletries – The obvious, shampoo, conditioner, soap, lotion, chapstick, toothbrush toothpaste, hairbrush, hair ties, a little make-up if that’s how you feel most comfortable.  For your child, shampoo, conditioner, soap and DETANGLER SPRAY and LEAVE-IN CONDTIONER for girls especially.    Nora didn’t shower till her last day there but her hair was a tangled mess.  If you can, put two braids in your child’s hair down each side of her head the day of surgery, and leave them in as long as you can.  This will really help with knots and tangles.

Ear Plugs – There’s much commotion that happens in and out of the room all day long and all night long. Nora’s oxygen stats were not stable for days and the monitor would beep and beep till a nurse came in if you have both parents in the room, ear plugs might help one parent get some sleep for a bit.  We tried sleeping in shifts.

A lot of families like to use essential oils.  Feel free to bring your diffuser and favorite calming oils.

Notepad – Our hospital provided us with a nice little bound notepad and pen if yours doesn’t, bring one to take notes in.  You will want to take notes on everything from what they eat and drink, when and how much, to care instructions and it’s a good place to write down any questions you might have.  It’s easy to forget your questions when you are sleep deprived.

Preparing Your Young Child For Surgery

  • Read books or watch movies or TV shows with your child about going to the hospital. We found the book Franklin Goes to the Hospital and Critter Goes to The Hospital to be really good books.  The cartoon Doc McStuffins was helpful too.
  • Lots of  medical play by taking turns playing doctor and patient. Include medical equipment if you can.  Through all of our castings we aquired a pretty sweet doctors/hospital kit.  We have been role playing for a long time and We’ve really found it to be helpful.
  • Don’t tell your child about the surgery weeks in advance.  It’s just too much time to make them worry.  I would suggest consulting with your hospitals Child Life department on when to tell your child and how to tell them.  Always be honest, but keep it brief and simple.
  • Allow your child to talk about their thoughts and feelings.
  • Let your child  help pack or mention a few things they would like to bring.

What It Was Like To Watch A Child Have A Mehta/EDF Cast Applied In The Operating Room

A few weeks ago I got to witness a sweet little two year old girl receive her fourth Mehta/EDF cast. I had the privilege of meeting this baby and her parents last summer when they were just starting the casting process and, like many parents, they were very overwhelmed and scared. We just so happen to have the same amazing surgeon, Dr. Sumeet Garg at Children’s Hospital of Colorado.

If you know me from all the early onset scoliosis support groups, you know I’ve tried to educate myself as much as I can on all things EOS, whether it’s idiopathic, congenital, even some on neuromuscular and syndromic. When it comes to casting, I think I have a great deal of knowledge on not only what it’s like to live day-to-day with a child living in a cast (my child did have nine casts in just about two years), but I also have a good deal of knowledge around the ‘science’ of it and the research behind it. But that’s been all “textbook”.

Over the years there have always been questions that have come up in the support groups where I haven’t fully known what a good answer is. I’ve thought for a long time, if I could just witness an actual casting and ask questions while watching, maybe I would understand better and be able to answer some of these questions better for parents.

Once Nora was finished with casting and we had her surgery behind us, I asked our surgeon if I could come watch one. He said, “I would have let you watch one of Nora’s castings.” That made me chuckle to myself a little bit. I know myself well enough; there was no way I wanted to see that process happen to my own child. I had to wait till we were past it. Taking Nora into the OR for every casting and battling to put her to sleep was just too much. I could never stay and watch the process and actually learn from it. I’d be too worried about her and I’d be an emotional mess. There’s a reason surgeon’s aren’t allowed to operate on their own family members…to me this was kinda like that.

Casting Day:
I had a bunch of paperwork and documentation to provide in order to be given the privilege of observing that day. When I arrived I met Dr. Garg and he took me back to get actual scrubs on and we worked our way to pre-op. He stopped often to chat with other doctors here and there. They were chatting about surgeries from the week before and a special casting as well. He took the time to fill me in a little bit on what each conversation he had was about. It was exciting to hear about new technologies they had implemented in a spine surgery and to hear about a different casting, where they did a waterproof cast.

Pre-Op Meeting:
The whole time we were walking around I was feeling great – excited and calm.  A new and strange feeling for me at the hospital. Once we made it to our casting patient’s room and I saw the parents of this little girl my stomach flipped and sank a little. I knew that look on their faces so very well. They didn’t want to be there, they were stressed, tired and more than anything nervous and a little worried. I knew those feelings so well.  And yet today, here I was cool as a cucumber; it felt wrong to feel that way. But isn’t that exactly how things are in a hospital setting? Such a stark contrast of feelings and emotions. It’s so hard on families yet can be exciting and rewarding for those who are caring for our children.

After we talked with her parents about the latest x-rays (which she hadn’t had since she started casting; they showed she had some great improvement –so that was exciting to see) the room filled with all the other doctors and nurses who are vital to the whole process. Dr. Garg and I left and made our way back to the OR, this time chatting about everything from our own kids to the holidays and upcoming work trips he had. I love that he shared with me details about his career and what he’s learning and what he’s teaching.

casting table

a casting table

Inside the OR:
In the OR, this time from the opposite side door I was used to walking into, I saw the little girl peacefully asleep on the bed. I was hit with a wave of emotions again. I knew this room way to well -all the equipment, the cold temperature in the room, the stark white walls and floor.  It was strange being here from the other side without my baby in my arms. I was introduced to everyone in the room and there was brief small talk while they seemed to get everything in place. For the first few minutes, I kept thinking this is what it was like when Nora was in here, this is what went on in here for each one of her castings. That sweet baby on the bed could be Nora. It was just an odd feeling.  But I quickly relaxed, because this wasn’t my child and because l looked at her face and saw she was ok, she was peacefully sleeping.

I wasn’t in the room for the intubation, so once we came in she had her IVs, all her monitors in place and the anesthesiologist was monitoring her. It was time to put the knit-rite shirt and stockinette on her body. and getting this special support piece around her neck and face. This is used to support her head and hold her head in the right position once on the casting table.
Now was the hard part. I even asked Dr. Garg at the end what was the hardest part about casting, he said the transfers from the bed to the table and back again. I can totally see why. It’s a lot to move a limp child who is intubated and has a bunch of wires and monitors attached to them over to this strange looking casting table, where their bottom rests or balances on this tiny 2-3 inch bar.

A lot of people are involved in the transfer, holding, and supporting her body and limbs. Once she was over, they quickly get all the wires out of the way or where they need them. Then a nurse is taking this long line of string like gauze and pulling it up over her hips. That string is then pulled and anchored to the back of the table, creating traction and pulling her torso straight. At the same time her head and the support under her chin is being secured to the opposite end of the table. Next her arms are pulled out straight and secured as well. All of that happened fast, but it was very calculated and done with extreme caution to make sure the child is in place properly and secured properly. I could see very easily how difficult that process can be.

The Actual Casting Begins:
Next she was quickly wrapped with the padding that goes under the cast with extra attention placed on her rib hump. Dr. Garg, assessed her and made a couple of tweaks here and there to how her hips were anchored and the position of her body on the table. He was looking at the mirror under the table that allows him her see her back and make adjustments.

child on casting table

this is not the child I saw casted, but this gives you an idea of what they look like on the casting frame

In no time they were ready to start applying the actual plaster. A nurse was unwrapping the casting material and dipping it in the water to get the plaster going and then handing it to Dr. Garg. He just wraps it around her whole body, round and round.  The plaster went on super fast. I had no idea how fast that was. The plaster begins to hardens fast, but not so fast you can’t mold it, unlike the fiberglass, which I will talk about in a minute. Dr. Garg would wrap it round and round and then gently push on points of her spine or chest or even hips. Then he would wrap some more, smooth it out and mold again, applying pressure here and there while he went round and round and the cast began to dry.

The pressure he applied, he explained was always with the palm of his hand. If you use fingers when applying pressure you can create pressure points which would not be good.  The derotating aspect of the cast application was, what appeared to me, as the hardest part of the cast application. To me it looked not only like a learned skill, but something learned over time that becomes instinctual almost while also being a bit of an art. That’s my best way of describing it.  He would gently push from the front and back to shape the cast and would repeat that over and over….smoothing, molding, applying pressure and shaping. He explained, knowing where her curve was from x-rays and her rib hump determined where exactly he would apply the pressure.

I asked how much correction he thought he got.  He said he didn’t know for sure but he knew he did get correction. He said surgeons can’t really tell how much without an x-ray.  This is something I’ve been wrong on for awhile.  I was under the impression surgeons could tell approximately how much correction they were getting while applying the cast and that’s something I’ve said to parents.  I’m glad I know better now.  It makes more sense to me now why some doctors do in-cast x-rays after every single casting.  I personally don’t know if that changes anything or if I’d like that many x-rays but I have a better understanding now why many do.

During this entire time the anesthesiologist was monitoring all her vitals. The cast application process and the pressure involved in the derotation, does put stress on the respiratory system. It is a snug plaster cast being applied to the entire torso.  There is no tummy opening yet.  This is why intubation is so very important. That intubation protects the airways.

The biggest surprise to me so far was that the process is much gentler than I imagined. I imagined it was a lot of pulling the body in traction to get it in place and then lots of pushing and pressure to actually derotate the spine. It wasn’t like that. Yes, there was some pulling and pushing but it was gentle. I was amazed and relieved!

That being said, I’m still shocked to hear there are some surgeons applying casts on kids while they are awake. There is simply no way, in my mind, that can be done on a child who is awake. One, it would be extremely traumatic for the child, heck it would be tough for even an adult to do that I think, being tied and pulled into place and can’t really move. Two, I have to imagine a young child would be crying hysterically, with their lungs taking in so much air in and out I don’t know how you would get the cast to be fitted properly around the torso. And lastly, how can you assure an awake child is receiving the right traction? How can you get them in place on a proper casting table when they are awake? I simply cannot imagine how it could be done properly and effectively.

Which brings up the next surprise, I still don’t understand how a surgeon makes sure the cast is sung, not tight and not loose. It has to be with how the plaster is smoothed on and how and where pressure is applied. It’s all in the feel I think.  To me, that seems like another part that clearly takes practice.

Next up, they applied the fiberglass top layer. This went fast too and this is where I could very easily see the difference in what you can do with plaster and what you can do with fiberglass. Dr. Garg showed me how you can mold and get better hold with plaster. It was very obvious watching to see how well the plaster works for shaping and molding. The fiberglass, it just doesn’t move the same or have the same strength as plaster.  It’s more rigid and it hardens faster. I could see how fiberglass just isn’t going to hold the derotation in place like plaster would.

This was a big take away for me. I know there are a handful of surgeons who are only casting using fiberglass. They clearly have had some success but I also think I understand why there are still many who aren’t seeing success; – Could it be related? Obviously, I can’t say for sure but I know if my child had idiopathic scoliosis, with a significant curve, that had the potential to being “cured” I would not want a fiberglass only cast.

After the Cast is Applied:
At this point this little girl was ready to be moved back to the bed. Again the transfer can be tricky.  Once they got her over to the bed the clean up began. Plaster is messy, and with as fast as you have to move there is sure to be some drips here and there. Then it was time to trim the cast. The edges, the tummy cut out, the small hole in the back,  and under the arms. Dr. Garg, drew with a sharpie where he wanted to cut first, and then went to it with the casting saw.

After living through many casts, I know firsthand the hardest area to deal with is generally under the arms. No matter how you go about it, the cast will rub and press into the arm. The key is not having it too high where it really pinches the skin and can cause sores. Dr. Garg explained how it’s just a tricky area, you can’t cut it too low otherwise you lose some of the casts integrity where it holds the upper chest area. This was something I didn’t know.  But If you don’t trim enough it’s going to rub and cause sores. In the casting support group, this is the area we see parents ask about the most. When we see ones that need trimming, I think it’s because most surgeons probably error on the side of caution and keep it a little high and see if the child tolerates it ok. It is hard to tell exactly how a child is going to move about in a cast when they are on a hospital bed under anesthesia.

After all the cuts were made it was time to pull the padding down around the edges, add the mole skin and apply the duck tape. It was that simple and fast. I know many facilities have an entirely different process for how things are done once the cast is on. Many wait till the child is awake, then they are put under a dryer and then taken to a room for trimming and taping – all while awake. I cannot tell you how grateful I am our surgeon gets it all done in the OR. I told everyone in the room the process other facilities have, the collective response from all was surprise and thankfulness for the processes that are in place at Children’s in Denver.

I think those differences have to do with a couple of things, one, the type of plaster the surgeon is using and two, how thick of a cast the surgeon is applying. That’s my only guess as to why some kids need to be put under a dryer and the process takes longer.

Final Thoughts:
All in all I’m very happy I witnessed this. I have a much better understanding now of how it all works and why certain things are done. I’m happy I was able to see just how gentle the process is overall, much different from what I imagined in my head. If there is any one thing I can impart on parents it’s that a properly trained surgeon with experience casting is going to apply the cast in a gentle manner. We often hear parents asking about giving their child Tylenol or ibuprofen after casting because the child might be sore from being pulled and twisted, from what I saw, that’s not the case at all. I think both over the counter medications can have their place post casting, but it’s not for pain from the actual casting itself. I hope parents can take a sigh of relief over that one.

Watching a casting instilled my belief, even more so, that casting was the best option for my child during the time we utilized it. There is nothing barbaric about casting and it can be absolutely life saving for many kids. My wish would be for more pediatric orthopedic surgeons and pediatricians, for that matter, to be able to see what I did and see how casting works. I know that would save more children from years and years of complex surgeries.

Hindsight is 20/20 – Looking Back, What Would I Have Done Differently?

We are more than two months post-op and coming up on almost three years since diagnosis and treatments. Naturally, throughout much of this journey, I have had time to reflect on specific experiences. Over the last three years I’ve also gained a great deal of knowledge. Of course, like many difficult roads traveled, there are moments where you think, “I would have done that differently”. Thankfully, at least so far, my list isn’t that long but I do think others can learn from my reflections.

Here’s my list of what I would have done differently knowing what I know now:

1. Comparing. I wish the literature, the websites, the overall information and patient stories I found on infants or young children with congenital scoliosis were more black and white in stating how very different cases of congenital scoliosis were. Most resources provided vague synopses of the disease so I didn’t understand the varying degree of complexities there were. Of course I could recognize the differences in extreme cases but there is still so much in between that.  I didn’t realize how two children’s cases could ‘seem’ so similar yet come to find out much later, they really were very different. That was the hard piece to understand and is worth repeating, cases could seem so similar yet they really were very different.

Early on I tried comparing my child’s case with others that sounded similar and it caused a great deal of frustration because the treatment plans and approaches were very different. It made me question everything but it was also a great way to really learn more.  The fact of the matter is, congenital scoliosis can have such varying degrees of complexities. What seems so similar can, in fact, be very different but it’s hard to understand that or actually see the vast differences unless you are a trained surgeon.

My advice to myself now would be, do not compare your child’s case to another. Ask all the questions, and let your surgeon point out cases that can legitimately be compared.

2. Second Opinions. This one is tricky, ultimately, I think second opinions are very important for congenital scoliosis and even early onset scoliosis. They are both so very rare, and I do think second opinions can be very helpful.

We got our diagnosis when Nora was five months old. I quickly learned this was rare and could be complex. I immediately thought we need to get a second opinion right away. Here’s the thing, we were very lucky to be referred to the surgeon who has been treating Nora since the beginning. He’s has extensive experience and background in congenital scoliosis and early onset scoliosis. He trained at one of the best hospitals for this in the country. We were lucky to have been referred to him from the get-go. I’ve learned many folks are not as lucky. Many are referred to the pediatric orthopedic surgeon who treats adolescent scoliosis and numerous other orthopedic issues, the surgeon who does not see these cases regularly.

Still, I rushed to get another opinion.  The surgeon we saw was the chief of orthopedics at a top 10 children’s hospital in another state.  But this surgeon was just like the one I referred to above. It became clear in the appointment this man did not see congenital scoliosis patients regularly and yet he would have been happy to taker her on as a patient. His recommendations and assessment was extremely different. Looking back, I never should have seen this surgeon. I should have researched more who I was going to see.  Early on I didn’t know the differences in pediatric orthopedic surgeons.  I assumed because this surgeon was the chief of orthopedics at a nationally ranked children’s hospital, surely it meant he knew a lot on EOS and congenital scoliosis. He clearly did not.  He also should have been upfront and referred us to a hospital on the other side of town that specializes in this, but he didn’t and that’s a whole other story.

We got several opinions over time.  We ended up seeing some top experts in different parts of the country and it was helpful but I also think our timing wasn’t the best. With congenital scoliosis you, almost always, are in a ‘wait and watch’ mode. Tom Petty said it, the waiting is the hardest part and it really is when you first get the diagnosis with a young child. The urge is to run out and get those second opinions right away. But here’s the thing, the young growing spine can be unpredictable. There is a vagueness about what to do exactly and when to do it in many cases. I think it’s best to make sure you are seeing the right type of surgeon in the beginning but then wait on second opinions.  Wait till things have progressed and surgery or other forms of intervention are being discussed or when things start to impact the overall health of the child. This is when second and third opinions are going to be the most valuable, I think. The one good thing about congenital scoliosis is there is time. Usually nothing requires an emergency type of surgery or intervention, you have time to figure our who your child should see.

Now, ironically if your child has early onset – infantile idiopathic scoliosis – well that changes things. This is just another example of how different these two forms of scoliosis are. Early onset  infantile scoliosis, in a young child, does not have time on their side usually. The most effective treatment is usually EDF/Mehta casting.  And casting is most effective when started young to maximize the opportunity of rapid growth that is ahead of the child to achieve growth guided correction. If you have a child with this form of scoliosis you need to act fast to make sure you are seeing a surgeon with a great deal of EDF/Mehta casting experience, unfortunately this surgeon isn’t always easy  to find either. There are still many surgeons who say casting is barbaric and the best option is wait, let the curve progress, and do growth rod surgeries later.  That thinking blows my mind.

3. Watching YouTube Videos – When I learned about the surgical options we had, I immediately began Googling. I was mainly lookingwish i knew for peer evaluated published studies on the surgical options. Soon into my searches, YouTube videos popped up that were showing the actual surgeries… like in the OR… right there looking down into the exposed spine. Watching surgical procedures has never grossed me out, in fact, I find them usually fascinating. Many years ago, I actually worked as a veterinarian technician where I got to assist in surgeries and I loved it. But there is something very different about 1. Watching orthopedic surgeries. So much hammering, chiseling, sawing. It’s tough and rough, it’s doesn’t seem as delicate as say watching an open heart surgery. And 2. Knowing that the surgery I was watching might actually be performed on my child adds a whole personal and different element to it. Watching these videos was a mistake. I didn’t watch for long but it was a mixed feeling of fascination, being scared, and feeling sick to my stomach. Looking back I would tell myself, do not watch videos of what your child’s spine surgery will be like. This seems so obvious….I know.

4. Going Back to the OR with my Child for Castings. – Nora was just 14 months old when she had her first cast applied. At the hospital that day, the nurses asked us if we wanted to go with her into the OR and stay while she was put to sleep. We said yes. It was really really hard to hold my child as she screamed and whimpered and fought the mask that slowly put her to sleep. I can still hear her soft whimpers that sounded like nothing I had ever heard from her before or since as she lay barely asleep on the table. It’s too much, too hard emotionally to witness that. But it was too late, we saw what we saw and experienced what we experienced, we felt locked in so we went back into the OR with her for every casting she had. There are times in life where ignorance is bliss. Looking back, I would tell myself not go back into the OR on casting days. The day and process is hard enough as it is.

5. Preparation for Recovery in the Hospital – If you follow my blog, or know me from the support groups, or from everyday life you know I’m usually extremely prepared. I’ve researched and talked to other parents, surgeons, etc, almost obsessively about everything in my daughter’s diagnosis. You would think I would have been fully prepared. But I wasn’t.

Our surgeon expected Nora to be released from the hospital earlier than she was and for whatever reason, I didn’t prepare myself really for the possibility that she would be there longer. I didn’t even pack extra clothes for myself. Looking back I would have prepared myself mentally for the possibility of staying longer.

He also was hopeful she wouldn’t need a blood transfusion, but of course it was a possibility and we filled out all the paperwork beforehand in case it did need to happen. Somehow, again in my mind, I didn’t think she would need one. She did need transfusion a couple days later. I wasn’t fully prepared for that mentally. There’s something about the words “blood transfusion” that seems so scary and horrible but really it wasn’t bad and it was the best thing for her.

Almost all the advice I got from other parents was: the first 24 hours post-op are the hardest. So that’s what I expected. That wasn’t the case  for us. The second day was much harder. Seeing it be harder than what others told me, threw me for a loop and I couldn’t help but let my mind wander and worry that things were not going well. When in fact, everyone’s recovery is different and it’s actually really common for day two to be much harder.

I wasn’t fully prepared for the difficulties we faced in recovery. The harsh realities of the side effects of narcotic pain meds and anesthesia – no one really talked about that with us.  Those side effects were some of the hardest to deal with in the hospital and some of the most heartbreaking.

Looking back, I would tell myself to fully prepare for many of the possibilities that can happen during recovery. I would ask other family’s to talk about the parts no one talks about.  I would ask about every aspect of recovery.  I thought I had but clearly I missed the mark.

6. Asking  Questions – Again if you know me, this one probably seems odd because I ask a lot of questions and have even written a blog post that lists tons of questions, I think are vital to ask your surgeon. But I didn’t ask all those questions in the beginning.  I asked a lot of questions but there were many I didn’t ask, many important questions I never thought to ask in the beginning.  I was just very lucky to have found a great surgeon who, thankfully, would have fit the bill anyway. But many of my questions early on never would have revealed that…we just got lucky.  Looking back, there are probably a dozen questions I wish I had asked early on, I’m thankful we have a great surgeon who would have been able to answer all those questions with the answers I would have been looking for.

Looking back, I would tell myself to research more what questions I should have asked.

Surgery Day- August 25, 2015

Tuesday, August 25th, 2015 5:30am
We arrived at the hospital for check-in. We have been to this hospital for pre-op check in numerous times by now over the last couple of years so it all felt very familiar and …comfortable. We weren’t walking into all of this as newbies. That really helped. It helped with my emotions, fears, and expectations as well as Matt’s and even Nora’s. Nora knew we were here because her doctor was going to ‘fix her back’. She knew we weren’t getting a cast but she didn’t fully know what all was going on either. She was comfortable and even relaxed during all the pre-op stuff like getting height, weight, blood pressure, etc. We sat in the pre-op room and waited. I felt like we were there for a casting which was probably good. I wasn’t fearful or extremely nervous at this point. Like always, interns, fellows, nurses, child life, anesthesia team, our surgeon’s team and even our surgeon were in and out explaining little things here and there and asking typical questions.

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We meet with the anesthesiologist weeks before to figure out our operative plan. Nora has not done well post-op with anesthesia before so this was a big concern for us. We decided on giving her a small dose of valium in pre-op and decided against versed. Nora was relaxed which was really helpful. For this surgery, we could not go back with her into the OR with her like we had before for castings. We were concerned this would upset her so the Child Life Specialist decided to let her take an ipad into the OR with her that was playing Curious George.

Suddenly it was time to go, that part seemed to happen so fast. As the team picked her up and gave her the ipad she immediately panicked, started crying and screaming. The valium was not doing it’s job anymore. She was begging not to go and for us to come with her. I had to dig deep to try and barely hold it together while I hugged her and kissed her sweet scared face. At that moment, I wanted to grab her and hold on to her so tight and just run. But I knew I couldn’t do that. I told her it was going to be ok and that daddy and I were coming and would be right behind her. We would see her in the room in just a minute. I had to lie to try and calm her. It was awful. I hated lying like that. Once she was gone, the tears just poured out and I sobbed a little. I was trying to be brave myself and hold it in but couldn’t. Dr. Garg was in the pre-op room with us when all of this happened, he looked at me and said, “Jackie she’s not going to remember this” he said it twice trying to reassure me. I knew this, but it was still hard. I pulled it together and we all talked for another minute or two and then we walked out to the waiting room.418

There is a spot outside of the actual waiting room, a lounge area, that looks into the waiting room and also has a balcony of sorts that looks down to the hospital’s first floor. This is ALWAYS where we sit when Nora has been in the OR. It’s MY spot. That day I was obsessed about this spot and worried someone else was going to be sitting there. It was as if someone else being there would change everything. What can I say, I’m a Chicago Cubs baseball fan, superstition is a part of who I am. I talked about my concern of someone else being there so much Matt just laughed at me because my obsession was ridiculous. I knew it was too.  But wouldn’t you know, as soon as we walked out there was couple was sitting there, in my spot. I just looked at Matt and he laughed.  We could still sit in the same area but not the same seats. I didn’t like this.

Matt and I decided to go downstairs and get coffees. Getting in the elevator I suddenly felt so exhausted and it was only 7:30 in the morning. It was going to be a long day. I got my fancy latte and we headed back upstairs. When we got back, OUR spot was open. The couple was no longer there. I immediately grabbed all of our things and made a bee line for MY spot. I suddenly felt much better.

428We kept ourselves busy for awhile with facebook and goofy stories online but that was slowly fading fast. I couldn’t read a book; I haven’t read an actual book in almost 3 years because I’m always researching. Now was not the time to try and pick up the latest bestselling novel. I had a pair of rosary beads in an old tiny leather case. They were my grandmothers. I’ve always felt comfort just holding the little pouch in my hand and that’s what I did that morning. I just held the pouch for hours and would often silently recite my favorite prayer, The Memoare. At one point I found my way down to the hospital’s chapel and just sat in there by myself silently for awhile. I thought about how many people had been in this room before me, with much bigger prayers and intentions for very very ill children. And so I prayed for all those who had entered that room before me and all those who would after me.

Only a few hours had passed by now and we were restless again. A nurses in the OR called us every hour to give us updates which were nice but the information given was generally pretty basic. Matt and I decided to go get more coffee and once downstairs we decided to go to the blood donation center. Matt was going to donate. We didn’t think it was a good idea for both of us to donate at the same time and I had eaten anything yet that day. I knew I should have but I just couldn’t stomach the idea of food for once in my life. As Matt was donating, I got a call from the OR nurse saying they would be finishing up soon and our surgeon would be out to see us. I had to go tell Matt to get his heart racing and fill up that donation bag quickly, jokingly of course. I headed back and Matt was soon behind me. When we told Matt’s parents Matt was donating blood, my father-in-law decided to go down and donate too. I’m very proud of both of them for giving back and helping save lives. After all, someone with the same generosity would help save Nora in the days ahead, when she needed a blood transfusion.429

About forty minutes later Dr. Garg came out to speak to Matt and me, he immediately said everything went really well. He said she lost more blood than they anticipated but still in the normal range for what they expect for that surgery. He said they would just keep an eye on her. Then he handed me the piece of paper he had in his hand. It was a copy of her x-ray that was taken in the OR after all the hardware was in place. I became overwhelmed with emotion. Never had we ever seen her spine look so straight. I looked past the hardware and just at the straightness of it all. I was overjoyed.  Dr. Garg went on to say he got better correction than he originally anticipated which was very obvious from the xray. The heavy weight we had been carrying around seemed to lift right then and there. I couldn’t help but lunge over and hug our surgeon and thank him. We talked for a few more minutes and he said we would probably be able to see her in an hour or so.

I was suddenly excited. It was a weird feeling to have at that moment. I never would have thought I’d feel excited immediately after my daughter had major surgery. Soon they called us back to post-op. Then I started to get nervous knowing she has not handled anesthesia well in the past. But when we turned the corner and saw her in her bed awake and not crying and even bigger relief set in.

Her face was swollen, they told us this would happen. She was laying face-down for hours during her surgery, the face is naturally going to swell. Nora was alert but sleepy and soon she was itchy and I mean really itchy. The side effects from the morphine can cause itchiness. She had all these IV’s in her hands but she kept rubbing her face because it itched so much. Our nurse wanted us to try and stop her from itching so much because she was going to scratch her already swollen and tender face with the IV’s poking her. That wasn’t easy at all, she was so itchy, we tried gently rubbing her face with a wet cloth but it seemed the itching was getting worse and our nurse asked a doctor to get a drug to counteract the itching. It took forever it seemed to get the order in for that. In the meantime, Nora had some juice and was watching Curious George and was dosing a little here and there.

432About an hour in post-op we were still struggling with the itching and keeping her comfortable now. Poor Matt got a little lightheaded because he didn’t really get to eat anything substantial enough after giving blood. So we had to get him a juice and cookie too. Thankfully he was fine after that.

By now our nurse wanted Nora to have this medicine that was supposed to counteract with the itching given to her on a slow IV drip. The single dose wasn’t really working. We were beginning to get a little frustrated too. This required our anesthesiologist to come by and see her and authorize the drug. He talked to us a little about the drug but to be honest it’s such a blur, at the time I just wanted her to be comfortable and for us to be able to move up to our room, I don’t even remember what he told us.

Also during this time, Nora’s oxygen saturations were fluctuating a lot. Not uncommon but they needed to increase her oxygen, she didn’t like that either. That was only the beginning too.

Once we were settled into her room and the IV anti-itch meds were going on a drip, she was much better. She had some discomfort early on but was drinking juice and water well. She also had two Popsicles and enjoyed a sucker. She could not make a decision for the life of her though. We brought easily 20 different DVDs and had the tablet loaded up with movies and shows, of course she didn’t want to watch any of those. She finally settled on Charlotte’s Web. We ended up watching that three or four times on repeat that day. That movie will forever be linked in my mind with Nora’s surgery.

She was incredibly tired but fought sleep like nothing I’ve ever seen. Her nurse that day said she had never seen a little one fight sleep so much either. We had to keep shifting her position in bed every couple of hours, she would be on her back or moved to her sides. She had this nice pad under her back that was connected to a cooler that sat under her bed. That cooler was an ice machine. It was loaded up with water and ice and it plugged and kept the ice pack under her back cold for hours at a time, so helpful. She had a folly in and also pressure cuffs on her calves to prevent blood clots. We still continued to struggle with her oxygen levels. They initially wanted her off oxygen around 5:00pm that day. By 8:00pm we had the oxygen canullas taped to her cheeks to hold it in place.437

Nora didn’t want Matt or me to leave the room, she freaked out a little when Matt left to go get water or something. It was understandable and heartbreaking at the same time. She finally fell asleep around 9:00 that night and one of us had to be in the bed with her. But no one really sleeps in the hospital, it seems like someone was coming in every couple of hours for this or that. Nora was insistent I lay one way in the bed with her and I had to be looking at her. She got mad if I closed my eyes, this was around 3:00am. It was a struggle; in essence, Matt and I had been up for 22 hours almost. And the pulse ox monitor would beep every time her levels dropped below 85. The machine was going off a lot. The low oxygen levels could have been from the morphine IV and the injection she had during her surgery and the valium she had been given for muscle spasms. Those drugs can lower the respiratory system. It could also be because of the blood loss she had.

Our first night was a little rough, at one point her pain was really bothering her and she was due or ready to have more pain meds. We had beeped the nurse and asked for it but it was an hour before she came in. She didn’t want to give the pain meds either which I didn’t understand. We were not a fan of this nurse, her communication skills were not the greatest. I found I had to take the lead and ask for things that I would have thought would have been brought up by her initially. The rest of the nurses were wonderful and very very helpful.

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Day two of recovery coming soon….

The Surgical Option We Decided On

After sharing with you all the surgical options we were faced with, it was great hearing from so so many of you.  I was surprised just how many people reached out to personally thank me for sharing the details in an easy to understand way.  Many folks were curious what we decided and so many shared their experiences with some of our options.  It’s true, there is no right answer, only time will tell, and every case and every spine is different.  But thankfully I can say, making this choice was relatively easy for Matt and me.

Here’s what we decided
(if you can’t wait and don’t want to read through the explanations in red type of why we didn’t choose an option, scroll to the bottom to the green and blue type)

Double Hemi Vertebra Excision:

What this surgery would mean is he would go in and remove both of those odd shaped vertebra. If it were only a single they would close down the vertebra above and below the one they remove and tighten it up and fuse it there from just the back part of vertebra not touching the front side of the vertebra. They can’t do that with two hemi’s in a row, at least not hers. What they would have to do is remove both, and do a fusion across the now open space on the front side of the vertebra as well as the back side but not cinching it down bone-to bone.  They can’t cinch two openings down in part because of the spinal cord.  It would be “open”. This “open” space would be have to be supported with a metal mesh cage. It would be fixated to the front and back of the three vertebra above and three below to ensure its stability, essentially fusing those above and below all the way around. This cage would be under the skin but would stick out some and you would see it.

The Cons:
– This surgery takes 8 or so hours
– It has high neurological risks – yes, just what you are thinking, damage to the spinal cord.
– Significant blood loss can occur in this surgery resulting in the need for blood transfusions
– Infection rates from surgeries that require more instrumentation are high
– Longer hospital stay post-op
– The curve could still progress as she grows requiring another surgery
– Compensatory curves could develop. These are curves that develop as a result of the initial curve below. Almost as if the pressure from the first curve would cause a secondary curve
– This surgery is considered a very big surgery with high risks. This is the biggest surgery with the highest surgical risks we have considered.
– Overall height loss of about 2 inches

The Pros:
– It has the highest possibility of being a “one and done” surgery. Meaning we wouldn’t have to do another surgery down the road because this one would be the ‘strongest’ almost.
– Significantly smaller rib hump
– Initially before our consult we expected this surgery to give us the best results in terms of correction, meaning it would straighten her spine the most as well. However, with the new information from the CT scan our surgeon ran all this though a simulation program and it didn’t project as much correction as we had anticipated

We were happy to eliminate this one, even though this is what we thought we would be doing for a long time now.  This surgery just has such high risks.  Its a very intense and invasive surgery, being able to cut those risks significantly with another option is reassuring.   And again, nothing is certain, our surgeon just didn’t know what all this one would have produced in the end compared to the option we chose, if this surgery  had more certainty then maybe this would have been the option we would have chosen. 


Convex Short Segment Instrumentation
A fancy name for what is the most conservative approach of all of surgery options. This surgery also involves leaving the abnormal vertebras in place and placing screws in and fusing only one side, the right side and also the back side, of the vertebra. Screws would be placed only on that one side one or two levels above and below the abnormally shaped vertebra. The idea here is that the screws on one side would act as a tether almost and pull the spine straight and allow the left side of the spine to be free from hardware and would have the ability to still grow.

The Cons:
– This surgery is considered relatively new so there isn’t any long term data available
– This surgery has a high failure rate. About 50% of the time it doesn’t work and it fails quickly
– This would probably only provide about 30-35% correction of her spine
– The curve could not only progress but more rotation could occur as well. She would then require another surgery or surgeries. Again, her odds of this happening are higher here than the other two options. The behavior of the curve after this procedure is just unpredictable
– She will still have a rib hump
– Compensatory curves cold still develop and probably have a slightly higher chance of happening with this method
– Overall height loss of about 2 inches

The Pros:
– This surgery is the most conservative so it’s the ‘easiest’
– It has the lowest rneurological risk
– It’s a short surgery only taking 2 hours
– Little blood loss is expected
– Fastest recovery time of all options
– Placing the screws in just one side could stop the curve progression but it could also result in spontaneous correction all on its own but knowing if that would happen is impossible to predict
– Doing this surgery doesn’t “burn any bridges” so to speak if it does fail and other surgeries are required.

This surgical option had also been an option that was discussed for some time, but I’ve never felt comfortable with this one.  Sure, I love how minimally invasive it is but the 50/50 odds of it working never sat well with me.  Since the beginning of hearing about this option, I’ve always had this gut feeling that this wouldn’t work, that this would quickly produce large compensatory curves that would need to be addressed.  There’s no way of knowing if that’s true or even a possibility but my gut said it was.  This was a situation where I knew I needed to trust my gut.  Besides, if we have surgical options, I’d like to choose something with better odds if I can. 


Single Hemi Vertebra Excision – Taking one out and leaving one in
This surgery would involve taking one hemi out and leaving one in and doing a fusion of both the front, back and sides of the hemi that’s being left in.  He would fuse the two vertebra above and below the hemi left inside. There would be no need for the mesh cage to be used like in the double hemi excision. The idea here is that taking one out would provide better correction than the short fusion surgery but how much is unknown.

The Cons:
– This is a long surgery, 6 hours or so
– More blood loss, possible need for a transfusion
– It has also has high neurological risks
– Infection rate is higher
– Longer hospital stay post-op
– The curve could still progress as she grows requiring another surgery or surgeries
– Compensatory curves could develop
– In ranking order, this surgery has the second highest overall risks associated with it.
– Overall height loss of about 2 inches

The Pros:
– It has a good possibility of being a “one and done” surgery.
– Significantly smaller rib hump
– Initially before our consult we expected this surgery to give us the good results in terms of correction. However, with the new information from the CT scan our surgeon ran all this though a simulation program and it didn’t project as much correction as we had anticipated

While this option doesn’t carry as many risks and potential complications as the double hemi excision, the returns on this one just didn’t seem to stack up against the option that we did decide on.  This single hemi excision is still pretty invasive and our surgeon just didn’t think we could get as much correction with this one as maybe we would have hoped.  


The Short Fusion
The CT scan gave a much better picture than the x-ray in terms of exactly what her abnormal vertebra look like. For a long time, one looked the most significant and we were just kind of waiting to see what the other one would do. Over time, it began to present itself as just as much of a problem as the first. The CT showed they are both about the exact same size and shape. The idea of this surgery would be to actually leave them in but carve out small horizontal semi-wedged sections of a certain part of each vertebra, almost like shaving it down, so he can pull it tighter to get more correction. He would then do a short fusion that would only involve putting screws in on the back side of the vertebra and not touching the front side.  The screws/fusion would encompass the two healthy vertebra above the hemis and the two healthy vertebra below the hemis. Screws would be placed on both the back left and back right side of the vertebrae, but again not on the front side.

The Cons:
– The curve could continue to progress because she would only be fused on the back side of her spine. So the front side of the vertrbra could grow and cause the spine to curve.  She would then require another surgery or surgeries. Technically speaking , her odds of this happening are higher here than if we were to do a double hemi excision.
– The curve could not only progress but more rotation could occur as well. She would then require another surgery or surgeries. Again, her odds of this happening are higher here than if we were to do a double hemi excision. Rotation has a very slim chance of happening in the double hemi excision
– She will still have a rib hump, it will be smaller but not as small as it would be from the double hemi excision
– Compensatory curves could develop
– Overall height loss of about two inches
– Higher chance of needing subsequent surgery than the double or single hemi excisions

The Pros:
– This surgery takes about half the time of the double hemi excision
– The neurological risks are significantly less
– Blood loss is significantly less. A transfusion would most likely not be needed
– Shorter hospital stay post-op
– He thinks he will be able to get pretty good correction from this surgery, possibly the same as he would from the double hemi excision maybe slightly more.
– This surgery is less invasive compared to the excisions and is considered to have much lower risks too.

The Short Fusion is the surgery we decided to do.  We are very happy to know the neurological risks are lower, it’s less invasive, and our surgeon feels good about the results this could produce.  Don’t get me wrong, this is still a very major surgery.  And yes,  we don’t know if this will be a long term solution,  it has a good potential of it not being a one-and-done surgery but really they all do.  Our thinking was why do something really invasive and tough now when there is something less invasive on the table that has less risks and our surgeon feels good about. 

When talking with other parents just starting their journey, whether it be casting an idiopathic child or a young infant with a complex congenital scoliosis diagnosis, I’ve given the advice of ‘don’t look too far into the future’.  Focus mainly on what’s right in front of you.  Growing spines are just so hard to predict. Looking too far out into the future can be daunting, scary, or people can get their hopes up just to be let down.  I’ve been dishing out this advice for awhile now, it was something I learned in the beginning of our journey.  It’s a hard one to make yourself do in ways but it really does help.  I just didn’t realize how much I’d be relying on my own words of advice even now. Whatever comes our way in the future we will face it then and deal with it then. The future’s not ours to see…que sera sera