Tay’s Scoliosis: Surgery Day

This post will be set up a little differently as it is intended to give more of the play by play.

I didn’t sleep much last night, which is to be expected. I doubt I will sleep much until we get back home. I had that panicky fear of sleeping through my alarm and her missing her check in time. I set three alarms, just in case.

I had to get Taylor up around 5:30, meaning she finally rolled out of bed at 5:50 at the threat of not being able to brush her teeth and get a sip of water. We also had to get packed up and out the door by 6:30 for our 7:00 check in. She is their first case of the day. She will take up a better part of their day, so hopefully they won’t have anything else after. They will definitely be tired.

We made it to the hospital and as expected, I was the only person who could check in with her.

We went up to check in. Robbie had to stay outside of the hospital while she got checked in and he had to wait there until I could get him for our other waiting area. They gave me a pager to get updates throughout the day and the nurse came to get us and took us back to her pre-op space.

Her check in nurse was awesome! She was super sweet and again reminded me that she would be asking Taylor questions directly because she is old enough to sign her surgical consent, but she would ask me things if she needed them. Oregon is weird. I want to keep answering for my baby for years and years. She got their answers right and she was forced to interact with humans, so it was sort of a growing win win for everyone. She had to wash her arms legs, chest and back with antibacterial wipes. I helped get get her out of her clothes and into the fancey surgical gown and pants. She was super excited about those and I had to remind her that at least she had pants on.

Once she was changed, her dream team began filtering in. First her surgeon. He went over everything again, making it very clear about what they would be doing, what the possible complications would be, and what to expect coming out of surgery and he had her sign her consent. Part of that consent was allowing them to take pictures for teaching or research purposes. He would only take them if there was anything that look cool or would help the research being done. I told him I want to see pictures of anything cool, because I am gross like that, but I don’t want to see it in person. He laughed and told me he would see what he could do.

Again, I am over here just being the guide on the side, fighting back every comment that I want to make. I would ask my questions and let them return to talking directly to her. This is so weird for me!

She was visited next by the anesthesiologist and her resident. They told Taylor what their job was and what to expect from them. They gave her some medication to calm her and some Tylenol. They let her know she would be eating popsicles when they were done because the breathing tube they will need to use will make her throat sore. She heard popsicles and was immediately happy, because after all, it is her favorite dinner.

They did warn us that she will be on her belly long enough that it could cause some vision problems so to be aware of that. Cool. I was also given the heads up from a friend of mine that she will come out swollen in the face and not to worry because that will go down after a few hours. This is advice I much appreciated because I would have been super shocked to see my pumpkin look like a pumpkin head.

I asked the anesthesiologist if they monitor her throat and make sure that nothing in her esophagus is nicked. He looked at me funny and I told him that it had happened to my mom and she almost died because of it. He reassured me that they are gentle with kids and they don’t have as much trouble getting breathing tubes placed in children. He was confident enough that my fear went away. I know they will take great care of her.

We were able to meet the resident who will be joining them. She will have a minor role, but is being allowed to join. I have no idea what she will be doing in there, but I know that they are all working for a common goal, whatever is in her best interest.

Finally the time came to say goodbye. I gave her a hug and told her I would see her when she is out of recovery. She told me Adios and threw me the peace sign and off they went.

The Wait

Oh my gosh! This wait time has been awful. First of all it was a giant cluster as I was trying to figure out this special spot was that we were supposed to be escorted to. I went downstairs to get Robbie and asked the front desk. I told them I was supposed to go to the waiting area on floor 11. They all looked at me like deer in the headlights and had no idea what I was talking about. I began second guessing hearing floor 11. This didn’t help when I got back on the elevator to return to the surgical floor to try and figure this all out and the elevator only went to 10. NOT AWKWARD AT ALL!

I walked back the spot where I checked in. The lady at that desk told me to wait downstairs. That felt wrong to me, but we went back downstairs. The front desk lady downstairs wandered over and told us how to get to floor 11. GREAT! At least I didn’t make up an entire floor. I told her we were supposed to be escorted, per the nurses instructions. We sat there looking confused. After a few minutes I decided I would go back upstairs and have them ask the nurse what we needed to do. It is important for them to know where we have wandered off to. The lady at the check in desk there told me again to go downstairs but then decided to call the nurse to verify. I was indeed not crazy. We were supposed to be on floor 11. We were supposed to be escorted up so we could be given fire escape directions. So the lack of communication there was a little frustrating and added to my already big fat ball of nerves. Finally we settled in, confident we are now in the correct place. Either way, we have a fantastic pager so I can still get my messages.

The pager that was given me has gone off twice now, both times the messages have been positive. She is doing well and Dr is working away. Now I am getting anxiety about what if I get a page saying come here quick? What if the surgery runs over? What happens if… You get it. I am a worrier, especially when it comes to my kids.

I also haven’t slept well for the past few days. I am so tired that this carpeted floor is looking mighty fine. I thought about shutting my eyes, but i snore and I don’t want to be THAT person…Robbie John…just teasing, his snoring wasn’t too loud this time.

It might be time for a snack. I did bring in my art stuff to work on. That is always a great way to burn some time. The lack of sleep is getting to me and my ADD has kicked in to full force.

The pager has gone off a couple more times. Once to let me know they were placing the screws and the other to let me know they were finishing up the rods. I realized I have no idea the order this was supposed to go in because I know there is a bone graft involved somewhere. So these new messages have added more anxiety just because I don’t know if they are almost done, and if so, were they not able to do as much as they wanted which is why it is ending a little sooner than anticipated? Or was everything moving along nicely and they were able to do what they needed to without complications? These questions will all be answered by her surgeon post surgery, but not having a set list to check of the procedure is making me feel out of control and unsettled.

To top it off, Robbie ran out to the car to grab a snack. When he came back in they had done a shift change and almost didn’t let him back in because he didn’t have a pass. Ummm….nobody told us that we needed to have a pass. There is a serious lack of communication going on here. I am sure it has something to do with the new regulations, but it leaves me hanging in a place I don’t want to be. I am the type of person who likes to work within the rules that are new to me. I have a fear of getting into trouble or yelled at for not following the rules. That same fear has showed up many times the past few days. Clearly, my safety is tied up in the boundaries set by the rules provided.

Pager goes off again. They are getting ready to close. They are almost done. Relief? Fear? Anxiety? I need to know more so I can move out of the waiting stage to the helping heal and recovery stage. I need to have my kid in my sight. I need to be there for when she is hurting. I need to tell her it will be okay and it is temporary. From out here, you can’t do that. All you can do is distract yourself and wait.

Finally got the page that everything was done and it was time for me to report back to the Surgical Waiting Area. I dashed out of there, leaving all of my stuff with Robbie. ALL OF IT! My heavy backpack. My purse. My drink. EVERYTHING. I thought about just grabbing it really quick, but decided it would be fine. I got back to the surgical waiting area. No sooner had I sat down then the fire alarm went off. Maybe it was a drill. Maybe someone pulled it. Are you even kidding me right now? Either way, Robbie had to pick up all of his stuff, all of my stuff, and go downstairs and go outside until it was done. They gave him a phone number to call to get back in once it stops. He comes walking back in looking like a crazy person.

Post Surgery

First of all, this kid is hilarious all drugged up. I am trying to catch as many funny conversations and comments as I can. She kept catching Robbie trying to take pictures and videos and told him that he needed her consent to take pictures. She told me she needed me to get her a consent form. He does not have her consent. I asked if I had her consent, she told me no, so the videos and pictures from today will have to wait. For now…

As we got her all settled in, I told her how happy I am that she is okay. This is a snippet of our actual conversation: Me: Tay, I have been so worried about you all day. Tay: (With drugged up swollen slightly annoyed teenagerly face and tone) Why? Me: Because, kid, it is scary knowing that someone has cut you open and is playing with your spine. Tay: Why? It isn’t even a big deal. Me: Honey, it is a big deal. It was a major surgery. I was worried about everything that could have went wrong and I was worried about how you were doing. Tay: No, it wasn’t a big deal. You’re just being dumb. Me: Well, I’m not being dumb and it was a big deal, but you are funny. Tay: (drugged up teenage dagger eyes)

She woke up hungry and she is starting out on a clear liquid diet. Me: Tay do you want soup? Tay: YES! That would be sooooo good. Me: Do you want chicken noodle minus the chicken and the noodle? Tay: Ew. Don’t they have tomato? Me: Yes, but it is red and you can only eat clear food right now. Tay: That’s stupid.

Me: Would you like a popsicle? I know your throat is sore and the doc said you can eat all the popsicles you want. OOOOHHHH YESSSSS!!! That sounds delicious.

10 minutes later: (eating popsicle) This is awesome! I should have more surgeries if I get to eat all of these popsicles.

(Closing eyes chomping at the popsicle, occasionally missing her mouth) Rob: Are you chewing that popsicle? Tay: Yes. Rob: Why? Tay: Because he said I could have it and I am tired so I wanted to eat it before I take a nap.

We brought her some applesauce. I asked: How was the applesauce? Tay: It was good until the jello came. I love jello. It is so good. I am going to finish it and then I am going to take a nap. (The same nap she wanted to take after the popsicle.)

Minding our own business while Tay is posting stuff unknowingly on Facebook. (random shouting) No! This is my good finger! I can’t tap my phone. Me: Why? What is preventing you from tapping? Is it your IV? Tay: No, my blood pressure thing. (It was the pulse oximeter on her finger.)

Tay asked me to bring her the cozy socks she packed. Me: What happened to your socks they gave you this morning? Tay: What? I don’t know. They took them off. Me: Oh, they must have taken them off when they changed your gown. Tay: WHAT? (looks down) I can’t even see this! Me: Well maybe they had to change you because you got blood all over the place. Tay: Yeah, your probably right.

When discussing what she remembered about today: Tay: I don’t even remember rolling to the OR. Me: Oh really, you said adios and gave me the peace sign. Tay: I don’t remember that. I did just want to speak spanish. But what I DO remember is when I got into the OR. I looked around and you know what? It didn’t look anything like the OR on Grey’s Anatomy! The color was different and it was set up differently. There were definitely more lights. It was BRIGHT! It wasn’t like Grey’s at all. Then I remembered the CPR unit when I saw the mask. I felt like a dummy cause I couldn’t do anything. I think he said take a deep breath.

Busted Robbie trying to video her again. STOP! I KNOW YOU ARE RECORDING ME! I”M SO TIRED! (tears)

Tay: *Crying Uncontrollably* I was not prepared for my emotions to be all over the place. Me: Me either kid.

Compression wraps being used on her legs: These feel good. It is like a little massage. Rob: So, can I give them a try? Tay: No! They are mine. Go away.

Ok, so now that we have hopefully all had a good laugh, let’s get to the important stuff. I spoke with the doctor during the fire alarm. He was able to do a little more than he thought and was able to stabilize her spine and line it up the top and bottom. It isn’t perfectly straight, but looks pretty dang good considering we anticipated a curve to be left over due to the secondary side curvature. He was able to flatten out the hump on her shoulder from the kyphosis. Again, he wasn’t able to take it away completely, but he was able to get it down so it won’t be as pronounced. In order for it to go away for good, he would need to remove the extra vertebrae, which is way too risky. So a minor hump and a straighter spine will do and for that, we are all grateful. When I told Taylor what he was able to do, she cried and said “I can go dress shopping now!”. Big tears rolled off our faces.

I need to get all of the specifics written down for me because there was so much going on with this surgery. I can’t remember what T did what or what L went where. I am sure there is some kind of surgical note I will come across, but unless it is specifically spelled out for me, it will take a bit to wrap my head around it. Poor kiddo had a hot mess of a back. True to his word, Dr. Yang gave her the 3D print out of her spine. We are going to put it in a nice shadow box so she can keep it. Taylor suggested I look for a box on Amazon. It was a good suggestion.

Her printed spine is actually really awesome. You can see the part on the side view where the extra vertebrae fused together at the top which caused this whole mess. AMAZING!!!!

This day has been long and hard. We begin the recovery process which starts today, but I will add that piece into a seperate post. This phase is the heart wrenching part. Every ounce of her pain, I want to take away. I want to jump up on her bed and just snuggle her, rub her hair, and tell her it will all be okay and this pain is temporary. But I can’t because her bed is too high and I don’t want to break her.