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.
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.
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.
We 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.
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.
About 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.
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.
Day two of recovery coming soon….
2 thoughts on “Surgery Day- August 25, 2015”
Hi! Thank you for sharing your story. Your daughter’s story seems to be very similar to my little Emerson. She was diagnosed with congenital scoliosis at 5 months old with curves at 58 and 72. She is a year old now and we are looking at the option of using casting to help give her lungs more room to grow and to put off any surgery until she is older. It looks like your sweet girl is doing well and that gives us lots of hope! Thanks for sharing 🙂
We did casting too! It worked great for Nora to but valuable growth time. I have lots of posts here about casting too. I have a couple specifically about what to expect. You can find them under the additional resources tab!