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….