Tag Archives: progressive infantile scoliosis

Tummy Time, Back to Sleep and Infantile Scoliosis….What Do they All Have In Common?

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I was asked to researched and write the following article for the Infantile Scoliosis Outreach Program.  Please note this piece is not considered a valid research study.  I do, however, reference peer-evaluated studies that have been accepted by the broader medical community.  I would also like to note, while my focus for this blog has generally regarded my family’s personal journey and/or has been specific to congenital scoliosis, the information in this post DOES NOT have any bearing on congenital scoliosis. Congenital Scoliosis is present at birth and means there are abnormally shaped vertebra(s).  There is nothing that can be done to prevent CS from occurring and there is nothing that can be done to affect the progress of CS besides proper medical intervention.    This post addresses concerns around the infantile/early onset idiopathic (no known cause for scoliosis) scoliosis group only.

 

In the early 1940s, Dr. Harold Abramson, a New York pediatrician, pored over heartrending reports of babies who accidentally suffocated while they slept. As he reviewed case after case, he noticed that a vast majority of the deaths occurred when babies slept on their stomachs. After decades of additional research the federal government, the American Academy of Pediatrics and child advocacy groups formally launched the Back to Sleep campaign, instructing parents to place infants on their backs for sleep for the first year. There’s no question the Back to Sleep campaign has helped save lives. Since 1994 the rate of Sudden Infant Death Syndrome (SIDS) has declined by more than 50 percent. What this campaign has also effectively done is scare new parents so much that they don’t want to put their babies on their tummies ever.

More research suggests taking away “tummy time,” cuts off a pivotal avenue of development. The less time infants spend on their stomachs, the slower they generally are to acquire motor skills during their first year, which means the potential delay of simple feats like lifting their heads as well as more-complicated movements like rolling over, crawling, and pulling to stand. Doctors have hesitated to sound the alarm about this, since children usually walk shortly after their first birthday regardless of how much tummy time they’ve had. But a growing body of evidence now suggests that the timing of the motor-skill milestones that precede walking is crucial and can even factor into long-term health and cognitive ability. Pediatricians however, have had mixed reactions to this and have passed this off as inconsequential. Others, including the American Academy of Pediatrics, champion of the Back to Sleep campaign, have seen the head shapes and motor hang-ups as a harbinger of future problems and recommended supervised tummy time when a baby is awake.

Here’s where infantile scoliosis fits in. Parents are seeing the potential of death as outweighing the potential of delayed motor skills. What parents aren’t hearing are the potential increased risks of Infantile Scoliosis, the most challenging orthopedic condition in babies, from not having sufficient tummy time.

Prior to the 1980s the incidence of infantile scoliosis was much higher in Europe where infants were commonly placed on their backs to sleep. During this time babies in the US were traditionally placed on their stomachs to sleep and the incidence of infantile scoliosis was a rare phenomenon in North America accounting for less than .5% of all diagnosed cases of scoliosis. During the 1980s Europeans adopted the tummy sleeping position for children and the incidence of infantile scoliosis dropped to record low numbers.

Now take a look at Scotland before the 80s, where parents were routinely advised to place their infants to sleep on their backs, cases of infantile scoliosis accounted for 41% of all diagnosed scoliosis cases. After 1980 Scotland reversed their stance on back sleeping and the incidence of infantile scoliosis in Scotland dropped to 4%. At the same time there is research going as far back as 1966 that states one of the benefits of stomach sleeping was the prevention of scoliosis.

So what do parents do with this conflicting information? Putting an infant to sleep on his or her back is without a doubt the recommended sleep position for a baby’s first year of life. However, tummy time is equally important and recommended for motor skill development and many would say for the prevention of scoliosis. The key is getting a sufficient amount of tummy time in. Parents should be encouraged to have their babies spend a healthy chunk of awake and supervised time on their tummies. This should begin soon after birth once the umbilical cord stump has fallen off. Several times a day so the child becomes used to it early on and likes it. There are lots of ways parents can practice tummy time, propping a baby on a nursing pillow while on the floor with them or even on a parent’s chest are great ways to get that added tummy time in and keeping everyone comfortable. Baby wearing is also greatly encouraged, as it too also helps promote physical development and decreases the risks of a baby developing infantile scoliosis. When parents choose a baby carrier it’s important to look for one that is comfortable to wear but is also ergonomic for baby.

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How Do You Know You Have The Right Pediatric Orthopedic Surgeon?

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Your child has just been diagnosed with the Early Onset Scoliosis. Any time you receive a rare disease diagnosis it can be confusing just trying to understand it and not knowing where to start. Chances are your pediatrician isn’t that familiar with the disease much less the latest treatments. It’s important to understand what Early Onset Scoliosis means and how the condition and treatment for it is vastly different than Adolescent Scoliosis. Early Onset Scoliosis can encompass Infantile Scoliosis (occurring from birth to age 2), Congenital Scoliosis (a structural abnormality in the spine that is present at birth but can go awhile before being detected), Syndromatic Scoliosis (scoliosis brought on by an underlying condition) and scoliosis that sets in between the ages of 2 yrs old and 8 yrs old.

This distinction is incredibly important. Here’s why: The majority of cases of ‘scoliosis’ are adolescent scoliosis. In adolescent scoliosis treatment happens on a very mature spine that is either completely finished growing or very close to being complete. Early Onset Scoliosis treatment happens on a very immature spine that has a lot of growth ahead. That major growth that still needs to occur provides a lot more challenges and changes every aspect of how the disease should be treated. A rapidly growing spine that already has a curve naturally has the ability for that curve to grow larger and faster.

Early Onset Scoliosis is rare. Congenital Scoliosis is even more rare. There are orthopedic pediatric surgeons all over the United States that specialize in ‘scoliosis.’ However, the number of pediatric orthopedic surgeons who have extensive experience in Early Onset Scoliosis and Congenital Scoliosis is much smaller. Let me repeat that because it’s an important statement. The number of pediatric orthopedic surgeons who have extensive experience in Early Onset Scoliosis and Congenital Scoliosis is much smaller.

Over the last couple of years, I’ve connected with more parents than I can count who have a child who has been diagnosed with some type of Early Onset Scoliosis. Unfortunately, some of them have not been seeing the right surgeon because it’s not something that is clear for parents to understand. You can love your doctor’s personality and bedside manner. He or she can have great experience in treating a much older and mature spine but that doesn’t necessarily make him or her the right fit for your child’s EOS diagnosis and treatment. There are many well meaning surgeons out there who treat adolescent scoliosis and then one day the rare Early Onset Scoliosis patient is carried in their door and they are probably intrigued and excited about the opportunity to have a rare case. But if they aren’t up-to-date on current treatments, training, and more or less have extensive experience treating this complex disease of young children, then frankly they are not the best choice.

Early on in our daughter’s diagnosis we sought out a second opinion. We saw the Chief of Pediatric Orthopedic Surgery at a top five ranked Children’s Hospital in the United States. He was the top guy in the department and his bio said specialty with scoliosis and spinal deformities. But it was clear after meeting with him and after doing a lot of research on congenital early onset scoliosis that he was absolutely dead wrong in what his treatment plan was. He didn’t have expertise in early onset and frankly he should have said so and referred us to the proper hospital just a few miles away (a hospital I didn’t even know anything about at the time). He was a ‘nice’ doctor and I’m sure great in other areas of orthopedics that he specialized in but what if we had only seen him and followed his treatment plan?

So how’s a parent to know? Here are some key questions to ask to make sure you are seeing the right type of surgeon: (Note these are not questions that are specific to understanding your child’s diagnosis)

1. Is your background in treating adolescent scoliosis or Early Onset Scoliosis?
2. How many patients have you treated with Early Onset and/or Congenital Scoliosis or how long have you been focusing on the EOS group?
3. What organizations are you involved with that are dedicated to advancement in research, training, and education of EOS? (Be sure to and look up the ones mentioned)
4. How many patients have you treated with EOS? How many do you treat in a year?
5. Do you have training in Mehta/EDF casting? If not, do you back the philosophy/ treatment of Mehta/EDF casting for EOS idiopathic and if appropriate for Congenital EOS, and do you refer patients to surgeons who do have extensive experience in Mehta/EDF casting?
6. Do you support the idea of your EOS patients getting a second opinion? Are there specific surgeons who you recommend for second opinions?

If your surgeon would like to cast or brace: What is your goal for casting/bracing? To cure, or provide some amount of correction through growth or to simply hold the curve to buy growth time?

Nora is in her eighth cast right now and over the past two years I have learned a lot about Mehta/EDF casts. While Nora’s casting goals are different than those with idiopathic EOS I’ve learned a lot about casting treatment for both. I’m not an expert by any means but I have learned enough to know I can go toe-to-toe with the best of the experts. That being said, myself and many other parents who have been deeply involved in the Mehta/EDF casting life, have seen some really bad casts out there. I’ve seen pictures of babies with large permanent scarring on their bodies from poorly applied casts that dug into the children’s skin. I’ve seen casts that had tiny tummy holes that caused the child to throw up several times a day for days on end. I’ve seen casts that were so loose and ill fitting there was no way they could have been effective. I’ve seen casts that incorporate a lot of these things and have caused so much pain for a child that the surgeon’s answer was to prescribe narcotic painkillers to an infant. A properly applied cast should not cause discomfort much less pain. I’ve seen casts that just don’t make any sense at all. Casting is just as much a science as it is an art and there is a learning curve to it.

So if your surgeon is suggesting casting as a first line of treatment how do you know your surgeon is going to apply a proper cast? Here are some important questions to ask:

1. Have you been trained in Mehta/EDF casting? Where did you receive this training?
2. How long have you been casting?
3. What materials do you use to apply a cast? (Typically they are made of plaster and often have a fiberglass layer on top. If your surgeon just uses fiberglass and not plaster ask why? Be sure to ask if they have patients that had success in casting with fiberglass only)
4. Does the hospital have the proper casting table that’s specific to casting an infant/toddler and/or young small child? What kind is it? (This is extremely important and be sure to look it up or check with others to make sure it’s a proper table)
5. Will the cast have shoulder straps? (More and more surgeons who are casting do not use the straps. The shoulder straps are needed when the apex of the curve in the spine is anywhere from T-8 and above. However most idiopathic curves are below T-8 but there are some surgeons who no matter where the curve is, will only apply casts with shoulder straps and that’s perfectly ok too. Some of the best looking casts I’ve ever seen come from surgeons who have been doing this a long while and only use shoulder straps.)
6. Can you show me pictures of casts you have applied?
7. Can you put me in touch with any former or current patients who have or are casting to hear their experiences?
8. Have you had to remove casts early because of structural or application issues that have caused problems? If so why? And how often has this happened?

And here’s what a properly applied cast should generally look like:

blog casts 1blog cast 2

blog casts 1.2blog casts 2.2

• The cast should start at the chest and wrap all the way around the back. It should lie just under a child’s arms and be about three inches above the shoulder blades. This upper half of the cast should be snug but not too tight. It should not be loose at all.

• Most casts should have a small, SMALL, “D” shaped hole in the back on one side. Now the “D” hole in some cases aren’t necessary, generally if there is little to no rotation in the spine a hole on the back isn’t needed but that isn’t common.

• The front of the cast should have a wide, I repeat WIDE, tummy opening. This allows for proper growth of the ribs/chest wall cavity. It also is necessary to allow the digestive system to expand and contract naturally. A small opening is worrisome and something we are seeing more and more of. If you see pictures that show casts with small tummy holes ask why?

• Now the literature supporting mehta casting says the front tummy hole should not only be wide but also hourglass shaped. Where the “sides” tuck in around the rib cage to support it. That being said, I have seen many casts that just have a LARGE round tummy hole. There is one facility that is very reputable and is considered one of the best places for EOS and Mehta/EDF casting treatment and their casts don’t have the hourglass shape but do have the large round tummy hole. Some surgeons seem to be customizing the tummy hole depending on the location and severity of the curve. If the pictures of casts the surgeons shows you are not consistent in shape and design, ask about the benefit of the changing shapes and what your child’s cast will look like.

• The bottom of the cast should have a snug bar that wraps around the belly and to the back. There should be a snug “nip” at the waist of the cast as well.

 

Why I Wish Early Onset Scoliosis Used Any Other Word Other Than “Scoliosis” In Its Name

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As soon as someone outside of my new Early Onset Scoliosis Support Family learns my daughter has EOS, they almost always tell me how they know someone with scoliosis. Which isn’t surprising, one in forty people have some form of scoliosis. The key words there are some form.

Most people don’t understand how vastly different Early Onset is from scoliosis that develops in adolescents (the most common form) and adults. Heck I didn’t at first either; the first place I went when we got the diagnosis was The Scoliosis Research Society of the US; which in my opinion is an extremely disappointing organization. The majority of the information they have on EOS is INACCURATE or very outdated. It took me awhile to learn that because why would anyone question an organization that large and with that much authority? It’s an embarrassment and is a huge disservice to patients with EOS and their families looking for information. Much of the information they have on Congenital Scoliosis is also outdated and inaccurate.

But I digress… Why is early onset scoliosis so different from the other forms (and I’m not even getting into where Congenital Scoliosis fits in all of this)? To put it simply…it’s the most difficult orthopedic condition to treat in children. It’s also has the potential to be fatal.  When a curvature over 20 degrees develops in the spine of an infant that is naturally growing at rapid speeds it going to get worse and can impact heart and lung development. Surgery at such a young age will also negatively impact the overall growth of the spine and child not to mention heart and lung development. These things generally cannot be said to the same degree when speaking of scoliosis in adolescents and adults.

The seriousness and vast difference is in part why I wish EOS had some other name. Because everyone knows someone with scoliosis, again, it occurs in one in forty people, and the large numbers of those are living with mild forms and are able to manage their scoliosis and that’s what people often associate scoliosis with.

I’m just a mom who is trying to take this diagnosis we were handed and find ways to educate the world, help others along their journey with this diagnosis, and ultimately make a difference. Knowledge is power. Now if only the Scoliosis Research Society could get on board too.

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“A Special Little Place In Heaven Just For The Person Who Developed Valium & Versed”

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I’ve said this many times…..There’s a lot I have learned I wish I had known earlier; the role of pharmaceuticals drugs being one of them. As I’ve written about before, by our 3rd cast Nora was really having a tough time with the entire casting process. She knew as soon as we got to the surgical wing of the hospital what was about to happen and she was scared and terrified and when it came time to have a cast trimmed or removed we went through an even more terrifying process. I’ve also written about the amazing help we found through a child psychologist and play therapy but I haven’t talked yet about drugs we have used that fall into the sedative category.

There is a big taboo around even the justified use of drugs like Valium and Xaxax, probably because they are also drugs that are abused often and have addictive qualities if not taken properly. Then you throw in the idea of prescribing these drugs to children, toddlers even… and people are often quick to judge and question and let fear take over . Heck even I did. When the idea of prescribing Nora a dose of Valium before any cast trimming or removal was brought up, I was initially frightened. Scared I could accidentally over dose her or she could have some crazy side effect, like stopping her breathing. But we were desperate, desperate to take that terrifying fear away from her. So we decided to try it.  It was incredible. It worked amazingly. It did just as her child psychologist said it would. It made her relaxed and just as though she didn’t care much. She still got a little nervous and cried for a brief second or two, but that was it. Since then we’ve learned to take her casts off ourselves so we bypass this entirely now for removal, but cast trimmings are always something we might face with each cast. I’m relieved to know we have this in the back of our medicine cabinet if needed.

Then there’s the drug called Versed. This little number was recommended to us at our third casting when Nora was terrified, crying and hiding in the play room on the surgical floor before her casting. This drug is a bit complicated though. It’s a drug administered only in the hospital before surgeries to relax a child and it also produces amnesia, so when they wake up they won’t remember what all went down beforehand. The downfall is some kids do not react well to this drug when they come out of anesthesia and are erratic. So it was a gamble. Nora was already one of the lucky kids who has an even tougher time than most coming out of anesthesia so the idea of giving her something that might make that part even worse didn’t sound like a gamble we wanted to take. So we sucked it up and dealt with a scared child beforehand who screamed and screamed while we held the mask to her face that made her go to sleep in the OR. It was very hard for Matt and I emotionally but we just did it. You do what you have to do.

It was at our fifth casting when our anesthesiologist recommended it again. This doctor was a straight shooter, former army doctor and very easy going, he told us he thought the chance of her reacting poorly on the other side was low and since we’ve been to this horse and pony show before we know what we are doing and how to handle a rough spell anyway. So we decided to try it.  This was a choice I wish I had made two casts before. I can’t explain how it felt to take my little 21 pounder to the OR and put that mask on her face and she was cool, calm and didn’t have a care in the world. As she laid there sleeping on the surgical table, I let out a huge sigh of relief. It was then the anesthesiologist said “there’s a special little place in heaven just for the person who developed Versed.” I couldn’t agree more.

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So if you are going down this road of casting, surgeries, and difficult procedures and your child is having a tough time and you are too…please ask your doctors about your options. They can make a big difference.

Day-to-Day Life in Plaster

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We are currently on our fourth cast and boy have we learned a lot by now. Much of it I wish we had known sooner, but isn’t that often how life goes?

Nora adjusted pretty quickly to her first cast. It really wasn’t holding her back from doing anything. In fact, she was developing some serious baby muscles. When we would remove her knit-rite shirt, that’s worn underneath her cast, and she would flex and pull herself almost into a crunch and you could see a six pack muscle outline. I kid you not. Carrying around that extra 2 to 2 1/2 pounds on such a little body is making our baby buff!

Speaking of the shirts, changing these little suckers is not fun nor is it easy but we feel it’s a must with a busy toddler who’s into everything. There was one changing episode where I didn’t think I was going to be able to get a new shirt on. The cast was so tight and it was so hard to dig and squeeze my fingers in between to try and pull it down and into place. After about 20 minutes and a few breaks I finally got it.

We’ve figured out a sponge bath routine that to this day, eight months later, is still a dreaded task. She simply hates just about every aspect of the sponge bath and hair washing. No matter what distractions we have or how many pieces of bribing candy we have on hand, it doesn’t matter she hates the whole thing and screams and cries. She just wants in a big full bathtub. But even though she hates it and fights it, she has, in a way, come to terms with it. As soon as we are done she, all on her own, happily applauds herself and smiles and typically does her happy dance.

Having the cast trimmed or removed is an absolute nightmare. Unfortunately, after four casts we’ve had to have 3 trimmed for various reasons. Being too high under her arms, too low on the hips so she can’t move about normally. The sound of the machine and the way it shakes her entire little body while it’s doing its job is simply terrifying for her. The techs felt so bad one time they went to the hospital gift shop and brought her back a couple of stuffed animals to keep.

We’ve taken her to a closer branch of Children’s hospital just for trimming and removal and it got to the point where she was crying and pleading as soon as we walked into the hospital – she just remembered. Holding your child while they try and cut and tear away at the casting material while she’s crying… No, not crying – screaming, screaming sheer terrified help me screams is just awful. I’ve broke down crying right along with her.

But once she’s settled down after having her casts removed, every time she points to her belly and pats her ribs and has a look of wonder, joy and confusion in her eyes. These casts have become a real part of her and suddenly they aren’t there anymore. It’s almost awe inspiring to witness. With each removal we’ve spent a few minutes afterwards just taking it all in…And that includes endless hugs.

The cast removal appointment is a roller coaster of emotions. I can’t tell you how amazing and incredible it feels to be able to wrap your arms around your baby…Around her body, touch her skin, feel her body expand and contract with each breathe after two months of wrapping your arms around a hard plaster cast. It’s like Christmas morning to me. I can picture it and I can feel it right now as I write this…I long for it and I miss it so incredibly much. It’s one thing I often find myself jealous of. I see parents pick up their little ones and give them a quick hug like or a big huge snuggle. They don’t think twice about it usually, why would they? But I do.

So after a long hug and squeezing session in the doctor’s office our routine is to go get milkshakes on the way home as a reward. In fact, it’s become our routine for just about any doctor visit now. And once we get home its bath time. The excitement on her face when she’s in the tub and realizing she can actually splash and play is infectious. It’s impossible not to grin ear-to-ear.

These breaks from her casts are filled with more baths than you can imagine, almost daily trips to the pool, ooey gooey messy crafts projects, more hugs and snuggles. I’m beyond grateful for these breaks where we have a few days to live life like normal.

milkshake  crafts  pool

 

First Cast – August 14, 2013

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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.

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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.

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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