First Cast – August 14, 2013

This was a hard blog entry to write, resurfacing all the emotions and everything that happened that day is hard for me.  It was the beginning of a major change in our lives.  But while some of this is hard to read, it does end well and I must say we are so very thankful and grateful casting has been an option for us. 

We had to be at the hospital by 6:30am that day.  After getting all checked in we once again found ourselves in a little hospital room, with a little hospital bed, getting Nora dressed into a tiny little hospital gown.  So many nurses, residents, interns, anesthesiologists, physician assistants, casting technicians, and our own surgeon came in and out of that room going over much of the same things over and over.   It was pretty non-stop for a good hour, which was probably good as it didn’t give us time to dwell on things.  When we did have down time while waiting, we spent time in the playroom.  We didn’t even know this existed till we got there, but after all our visits since, it has proven to be a fantastic perk to the Children’s Hospital.  This playroom is full of toys, books, blocks, ride on toys, train sets..you name it.

While in the playroom, the anesthesiologist came in to talk to us a bit more, explaining that Nora would not only be put under general anesthesia but that she would be intubated.  The tube down the throat just like you see on doctor shows dramas and movies.  The need to intubate is basically because they twist, turn and apply a ton of pressure on her little body to get her spine corrected as best they can and into a plaster cast so with all that pressure and twisting they need to really protect her breathing.  However, she would be put under, at first, with gas and Matt and I would go into the OR with her and hold her while that happened.

first cast at hospital

When it was time to get started, Matt and I put on our hospital issued blue scrubs jumpsuit and caps to go into the OR.  The tree of us took a few funny photos together just to try and lighten the mood. The nurses came to get us and we gave her our fancy duck tape with pink flying pigs to be used on Nora’s cast and then we carried her down the long hallways to the OR.  The last time I had been in an OR was when she was born just 14 months before.  I was scared then too but this was so different.  It was a large room, so white, so sterile, and so many people in blue scrubs in there, way more than when I had a c-section.  We walked over to the operating table and to the right of it was the casting table.  My first thought when seeing this table was, it looked like a mid-evil torture device.  I had visions of her being tied to this thing and being pulled in every direction. Which frankly, is what they do.  I quickly had to turn away. I couldn’t look at it any more.  My heart was already racing, I was terrified and so many people were trying to talk to me and explain things.  Again.

casting table

I sat down holding Nora as the anesthesia team came over and placed the oxygen mask on her face.  Nora instinctually fought the mask and the gas.  She fought it hard.  Crying, screaming, pleading, trying to pry the mask off.  It was awful and it took at least a minute, which is a long time for something like this. But eventually her body became weak and heavy and she was asleep but there was still this faint crying, weeping sound I had never heard from her before, emitting from her tiny body.  It’s a sound and a sight that is ingrained in my brain and I will never forget.  My eyes well up just thinking about it and writing about it.

We laid her down on the table and the team told us to give her a kiss and tell her we love her and will see her soon.  I didn’t want to leave, I didn’t want to stop caressing her face and kissing her forehead.  I didn’t want to be doing any of this.  As the nurse took Matt and me out of the room there were tears streaming down both of our faces.  That experience was so difficult, so scarey, so many unknowns.  As the nurse walked us back to our room she comforted us and said, it’s very hard to see them fight so much and go to sleep, she assured us that part was harder for us than her.  She hugged me and told me she would take care of my baby.

When we got back to our little hospital room, Matt and I both cried more and just hugged each other till we were ready to take those goofy jumpsuits off and head to the waiting room.  I sat in that waiting room numb and nervous.  I had my rosary wrapped tightly in my hands and I just prayed… and prayed and then I facebooked.  Yep, facebook.  I had to kill the time somehow and find a little escape.  I was grateful for all the funny posts and stories I saw that morning.

Finally, our surgeon came out to tell us it well; they were just finishing up and taping her cast.  He went over a few details and said the anesthesiologist  would be out to talk to us soon.  We waited another 45 minutes or more till we were able to go see Nora.  When they walked us back to the recovery room, she was in the arms of a nurse, she was unhappy, she was crying and this cast looked ginormous.   As he handed her to me, I couldn’t believe how heavy she was, how thick the cast was, how stiff it was.  It was Plaster is much heavier than fiberglass be grateful  fiberglass casts for broken arms and legs my friends.  I was somehow delusional beforehand to just how stiff a body cast would be.  She was so upset and so confused and I didn’t know how to comfort her.  Her body couldn’t wrap itself around me in a big embrace; I couldn’t rub her back to comfort her like I normally would.  I hadn’t thought about this and suddenly I didn’t know what to do.  I was scared; I didn’t know how I was going to be able to handle this as our new normal.  Panic started to hit me and I had to give her to Matt to hold and try to calm her. Nothing was working to calm her, understandably.

first cast at hospital - matt

We had a whole team of nurses and doctors coming to check on us and try and help get Nora settled.  She was unhappy with everything, including the IV in her hand.  She was constantly trying to pull it off.  The nurses finally said her vitals were ok and they could remove the IV and we moved back into her hospital room.  She wasn’t happy there either.  She wanted juice, then she didn’t want juice, she wanted popsicles, then she didn’t.  We found walking the halls was the best we thing we could do to keep her calm.  Matt and I took turns carrying her around.  She was heavy.

We still had to get an x-ray.  They wanted to see just how much correction they were able to get with her in the cast.  After a good hour or more we made our way to radiology.  Forcing her to stand in a position she didn’t want to for her x-ray just upset her even more.  It was becoming clear at this point she didn’t want to see anyone in scrubs. We soon learned that before her cast was on her curve was at 58 degrees, in the cast they were able to correct it to about 37 degrees.  This was great news.

Nora x-ray - first cast 2
(look at that correction in the cast!)

As we made our way back to her room, she was still so unhappy and I noticed her left arm and hand seemed red and slightly puffy.  The nurses took a look and didn’t know why.  They called to have a resident come down and look.  Of course that took awhile and I was starting to get nervous.  We also noticed at this time the cast seemed too high under her arms and she couldn’t put her arms down very well.  They told us we would need to trim her cast.  They also said that first casts can be tricky and trimming isn’t uncommon.  They finally determined her hand was ok but it was time to trim this cast.

She was very leery of anyone coming near her, she didn’t trust anyone.  And now there were five doctors and nurses in our room ready to trim this cast.  This became the worst part of the day. By far the worst and the hardest part of the day.  We laid her down on the bed, she’s screaming.  The cast trimming and removal machine was turned on.  Anyone who’s ever had a cast taken off knows it’s loud.  The entire team and Matt and I are holding her down…pinning her down while they cut the thick plaster cast and the padding around it under her arms.  It was taking an eternity and my sweet baby is screaming terrified, “help me!” screams.  I was losing it.  I looked at Matt, scared, mad, angry and terrified myself.

While holding her down and trying to soothe and reassure my baby while simutaneously trying to help the team cut and tear away at casting material, I started thinking of a scene from the movie Terms of Endearment.  It’s a scene where Shirley McClain’s daughter is in the hospital in dire pain waiting for her pain shot that she has to wait till 10:00 for. It’s finally 10:00 time but the staff isn’t bringing it to her, Shirley’s character asks nicely several times and no one’s bringing the shot.  Soon she’s running the halls screaming “Give my daughter her shot!”  Here’s the clip from that scene  http://youtu.be/plqzeUB9B-w

I felt just like that.  I wanted to scream, “Stop! Enough is enough!” I was fighting it so hard.  Looking back and knowing what I know now, I wish I had said stop and figured out a new strategy.   When it was over Nora was exhausted, exhausted from all of it.  She collapsed in Matt’s arms, so happy to have her dad comfort her.  We were all exhausted.  Thankfully, we got to leave about an hour after that.

car seat image

We were happy to be home, but we were very nervous.  Nervous on how to handle all this, what to expect from her and how to adjust, she was still sleepy from anesthesia and the trauma of it all.  We all laid down to take a nap together, but I couldn’t sleep.

Shortly after her nap she wanted to walk around and do the things she had before but she was a bit uneasy on her feet and was still adjusting to the weight and position of her torso. She had a couple spills, but soon figured it out.  But she wanted to be left alone much of that afternoon.  It was as if she didn’t trust anyone. Who could blame her.  That, too, was very hard for me. Not to be able to comfort your child when they need it the most.   There were so many tears that day.

That night she slept in our bed with us.  It was a restless night and we soon realized how cuddling with our child had changed not to mention sleeping with her too.  Getting hit or bumped with that cast hurts.

The next day, Nora was back to being Nora.  It was amazing!  She was laughing, bouncing around, adjusting to her new hardware.  And we were adjusting as well to all the new challenges we faced.  It’s really true, kids are very resilient and adapt so much better than we adults would.  It was incredible to see how quickly all-in-all she adjusted.

unnamed

This video below was taken about 4 days after she got her cast, for anyone out there worried about how their little one will adjust and handle having a cast on, you have to see this video.  This will make you smile, laugh and feel some reassurance that your little one will be ok. This, in part, makes it all worthwhile.  http://youtu.be/ueeOTdRFt2o

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Follow-Up Appointment – July 2013

We had been doing exactly what Nora’s surgeon told us to do — enjoying our baby, living life, staying healthy and having fun.  She had had her regular follow-up appointment in April where she was x-rayed.  At that time, her curve had progressed, but only slightly. Her surgeon was happy and said we would check again in three months.  As we got ready for that next follow up appointment in July, I knew her curve had gotten worse.  As a mom, I just knew.  I could see it.  I could feel it.  BUT I truly believed it still wasn’t that bad.  I was as hopeful as her doctor was that we might not have to resort to casting – that by the time her curve was bad enough for something to be done, she would have been big enough for surgery.  I believed this so much, in fact, that I told Matt he didn’t have to come to this appointment.  I knew it was going to be quick, all would be fine and the doctor would send us on our way.  But of course, that didn’t happen.  As I sat there in the exam room with a very active, into-everything 13-month-old baby,  I felt the weight of the world come down on me as our doctor explained that her curve had progressed significantly to 58 degrees, and we needed to consider casting as a way of slowing this down.  I felt like I couldn’t breathe; I couldn’t focus on what he was saying.  All I could think about was  how much my little girl truly, deeply loved water and was drawn to water wherever she saw it — and how I was going to have to keep her from it now, not allowing her to experience the joy of playing in the bathtub, running in the splash pad, swimming in her dad’s arms at the pool.  I was wishing Matt was there and cursing myself for telling him he didn’t need to go and not to worry.

Nora x-ray 7-25-13 2

As I left that appointment, walking through the parking lot with my beautiful baby in my arms, I looked at her sweet little face and her big blue eyes and just broke down.  I didn’t cry — I sobbed and balled my eyes out.  I tried fighting it for her sake, but I couldn’t. I just couldn’t.  I needed one minute.    She looked up me at with this confused and concerned face and she reached out with her chubby little hand and touched my face.  It was her way of saying, “It’s ok mama. I’m gonna be ok.”

I collected myself, got her in the car and called Matt to tell him everything, and that I had scheduled another appointment the following week with her doctor so both of us could discuss casting in more detail.

At that next appointment, we talked about the pros and cons of casting.  Apparently, we wouldn’t even know if it would work.  While casting has been proven to actually straighten and ‘fix’ curves in many cases of kids with early onset idiopathic scoliosis, congenital is very different.  A cast is not going ‘fix’ a congenital curve — all it can do is try and slow down the progression of a curve or curves and buy time for a child to grow before surgery.  And casting doesn’t always even accomplish that. But our doctor felt confident that it might for Nora, so it was worth a shot.

Bracing, a slightly less daunting approach than a full cast, wasn’t even an option.  Our doctor explained that it’s basically been proven not to work with congenital scoliosis. He is highly trained in casting techniques and has casted many patients, and as I’ve learned through four casts now, casting is not only a science but an art.  No two casts are alike.  There are many bad casts out there, and I’ve seen some. It’s critically important to find a doctor who has a lot of experience and is a master at casting.   While we hated the idea of how upset Nora would be in a cast, Matt and I looked at casting as, “what did we have to lose?”  If we didn’t try it, chances were her curve would continue to quickly progress and we’d be looking at some type of surgery much sooner than we all would like.   Her curve at this point had already progressed to 58 degrees and she already had decreased lung volumes, meaning the curve was impacting her pulmonary development.   It’s funny how my views on casting and how our own reality changed so much that I was actually hopeful for the casting process.

We had a couple of weeks before we would be getting her first cast.  We spent as much time as we could at the pool, the beach, the splash pad, playing in the bathtub, water table – anything water related.

photo 1

Spinal MRI, Echocardiogram, & Kidney Ultrasound at 7 Months Old. – January 2013

With the knowledge looming over our heads that there was a potential for Nora to have other abnormalities, we decided to schedule her tests sooner rather than later. The echocardiogram was pretty easy. The hardest part was trying to keep an energetic seven month old laying relatively still and relaxed for 45 minutes.  Matt and I were pretty impressed with how well we managed to do that.  We left the hospital that day knowing we were in the clear and her heart looked good.   One down, two to go.

The MRI was next, and we knew that this would be much trickier. Nora would have to be put under general anesthesia for that.  That’s scary for anyone…any parent… and especially for parents of a baby.   We had all our instructions and hospital prints outs about the procedure in hand, and we were ready to go early that day in January.  Withholding milk, water, juice and food from a 7-month-old for six to eight hours was torture in itself, but we were able to keep her distracted and happy leading up to everything.

We arrived at the hospital, got checked in and were taken to our room where we dressed her in a tiny little hospital gown that you would normally think was so cute.  She happily played with toys and hammed it up with all the doctors and nurses that came in to meet with us and check on her and explain things to us – again.

 mri

Before long though, it was time for her to go.  We gave our sweet baby great big, lingering-never-want-to-let-go hugs and kisses and watched as these nurses –these strangers — took her away.  I could feel the tears forming but was fighting them back as hard as I could, given all the horrible scenarios that were playing out in my head. 

Matt and I sat in that waiting room for what seemed like hours and hours.  We didn’t say much, as we were both thinking things that you just didn’t want to say out loud.  We held each other’s hands tightly and prayed.  And prayed and prayed.

About an hour and half later, a nurse came and got us.  Nora was in recovery and doing well.  The nurse told us they were able to do her kidney ultrasound while she was in recovery and still sleeping and that her kidneys looked just fine!  Two and three down!  

Nora was very sleepy and definitely drugged up when we saw her.  She had a tough time holding her head up but she gave us a few smiles.  We sat with her, rocked her and gave her juice while she fully woke up, which really didn’t take that long.  We got to leave about an hour later.  She was pretty much her happy silly self by time we got home.  Sigh of relief and major thanks to God!  

 mri 2

Our doctor called a few days later with the details of her MRI report.  All in all it looked good.  No other abnormalities were detected besides the two discs at T-10 and T-11.  More good news!  And a lotmore thank yous to the Big Guy upstairs. 

First Appointment with the Pediatric Orthopedic Surgeon – December 2012

By working every angle and connection I had, I was able to get an appointment with a top orthopedic surgeon in just a week from having her first x-ray, vs. the four weeks I was initially told.  So we made the trek to Children’s Hospital in Denver.  Our doctor seemed so young, about the same age as my husband and I. In everyday life, that’s not young exactly but in doctor world it seemed young. His resume was just what you’d want to see; Harvard medical school, multiple fellowships and residencies with the few top doctors and hospitals specializing spine deformities of children in the US.

At this appointment, he explained congenital scoliosis very specifically.  We learned her curve was at 38 degrees and she had two hemi vertebras at T-10 and T-11 in the thoracic section of the spine.   He assured us she wasn’t in any pain and her curve wouldn’t limit her gross motor skill development.

He told us we would need to do an MRI to get a complete picture of her total spine and spinal cord. We would also need an echocardiogram and ultrasound on her kidneys. Reason being, when spinal deformities are formed in utero, between 3-6 weeks of pregnancy, it’s the same time major heart and kidney development happens and that increases the chances of abnormalities being present in those organs too.

Because her condition is rare and the research and treatment for these kids is constantly evolving, we were asked to be a part of a national study through The Children’s Spine Foundation. Without any hesitation we said yes.  If there was anything we could do to help others, we would.

Beyond that we were told we would just monitor her spine every 3-4 month with an x-ray and to go home, be happy, stay healthy and live life and enjoy our baby!  So that’s exactly what we did…. But we also scheduled a second opinion with a surgeon at Chicago’s Children’s Hospital.

Nora’s Journey with Severe Early Onset, Congenital Scoliosis

After a lot of encouragement by others, I decided to start this blog simply because there just isn’t a lot of information out there about Early Onset Congenital Scoliosis. Even some of the nationally recognized authorities and scoliosis organizations do not have current and accurate information readily available! Shocking right?  If nothing else, I hope our experiences, stories, research and information can help other families with this diagnosis.

Here’s where Nora’s Story Began – December 10, 2012

nora santa

It’s this picture, right here, where it began for me.  I will forever look at this beautiful picture with a mixture of emotions.  You’re thinking: What? This is such a great picture of an adorable baby (she is pretty darn adorable isn’t she?) meeting Santa for the first time and she’s happy!  But it was that day, just before going to see Santa that a good friend confirmed that I wasn’t crazy and being an overly worried first time mom.   I had noticed what looked like and felt like a curve in my daughter’s spine earlier that week.  She was just five and half months old.  I showed it to my husband and he thought so too but wasn’t entirely sure either so we asked our friend to take a look.  She, without hesitation, confirmed our thinking.  Of course it was a Saturday and I knew we wouldn’t get in to see her pediatrician till Monday, giving our minds plenty of time to go into overdrive with worry. 

So this picture will forever stand out to me as the beginning point of her journey down a long curvy (pun intended) road.  And this picture will also make me smile and remember this cute, funny little baby less than 15 pounds, waiting in line to see Santa and was truly admired by everyone else in line.  I mean look at her, she’s so stinkin’  adorable you just want to squeeze her!

That Monday we got her first x-ray.  The x-ray tech let me see the x-ray before we left.  What a bad idea that was.  We didn’t see a doctor after the x-ray, we didn’t get a report or diagnosis right then and there either.  No, we went home and had this image ingrained in our brains.  So what did I do at this point? Of course I cried and cried… and then I googled.  Yes I googled!  I knew I shouldn’t google medical things aimlessly without all the facts, or any facts for that matter, but I couldn’t help myself.   It wasn’t till the next  afternoon that we got the call that said, “Your baby girl has congenital scoliosis, she will have to have surgery. You need to go to Children’s hospital in Denver and see a orthopedic surgeon who specializes in congenital scoliosis.”   

nora first x ray

Stay tuned folks, as I’ll try and update this quickly and get us up to where we are at present day!  Also check out the about section above and get a little more knowledge on EOS Congenital Scoliosis