A blog by Lori Lyons

Monday, July 14, 2014

Bent Wings: A Scoliosis Journey -- Getting Straight

**Blogger's note: I honestly had every intention that this final chapter in our Scoliosis journey would be a running log of our hospital stay. I imagined keeping the world and my 42 followers  up to date on our daily progress. Yeah. Then reality happened. There were days at the hospital when I was too tired to comb my hair, much less compose a blog post. And since we've been home, my days have been consumed by Lora's care. So, the world has had to wait for the end of the story. 

If you don't want to go through the whole thing with us, here is the short version: Lora's surgery was a complete success. Her 48 degree curve was reduced to 5 degrees. She was on the table for 7 1/2 hours, the longest and hardest day of all of our lives. She spent six days in the hospital.  Her recovery has been slow (and very emotional), but steady. She gets better every day. We consider ourselves so very blessed.

Now, here is the long version .... (I will update daily, then semi-daily.... then once in a while. We'll see.)

July 3, Day One: After months of anxiety, weeks of sleepless nights and one outright panic attack on my part, the day is here. We had to be at the hospital for 5:30 a.m., so Lora and I intended to stay up all night watching Teen Wolf. I almost made it. I zonked out at about 12:30 and she nudged me awake. She finally let me go to bed at about 3 a.m. I did sleep for an hour. Amazingly. Just as amazing is that she wasn't nervous or scared at all. It was like she was going off to camp or something. ... It was still dark outside when we pulled out of the driveway and when we parked at Ochsner Hospital. There was no traffic. We made our way to the second floor -- Same Day Surgery -- where I checked us in. And thus began the longest day of my life.
     They handed me a card with a number on it. Lora's number. I didn't understand at the time, but I would later. She went off to a little corner to listen to her music while I paced and Marty made friends with some folks sitting nearby. At 6 a.m., they called Lora's name in a group of others and my heart began to pound. She and I followed the nurse to the back. We got her changed and onto the gurney. Then there was a flurry of activity as one nurse after the other came in. One took blood. Then one put in the IV. That's the only time I saw fear on Lora's face -- briefly. It was the only time she let me hold her hand. She handled it like a champ. A few minutes later, I sent for Marty to come in to wait with us. Folks came in with papers to sign. People came to explain how things would work. The anesthetist came in. The neurologist, who would be monitoring Lora's nerve activity throughout the surgery. The Child Life Director came in to ask if there was anything we needed after surgery. Another came in to bring Lora a helium balloon. Then Dr. Waldron came in. I asked him if he was well-rested, had a good night's sleep, a good dinner, practiced drawing his straight lines ... And more nurses. They kept saying, "A few minutes." They weren't kidding.
     At 7 a.m., they came for her and we were told to say our goodbyes. It was heart-wrenching. Yes, I cried. I tried not to, but I couldn't help it. Yes, there was the fear that I would not see her again or that something horrible might happen to her. I had to entrust my daughter to them. And that was hard. Marty broke the tension a bit. "Go straighten her out," he quipped.
     Then they gave her a shot of something, and wheeled her off, her balloon tied to her gurney and flying in the breeze.
      Marty and I made our way back to the waiting room and found an empty loveseat. We settled in. We were so naive. The huge area was already filled with families and friends of patients, loved ones holding on to clear plastic bags filled with their loved one's belongings. We each updated our friends and families via cell phone and Facebook, and sat back to wait....
     Marty and I have since debated whether this was the longest, hardest day or our lives or the day of her birth, when we were so terrified that things could change at any minute. I said birth day; he said surgery day. It's pretty close.
     We spent about two hours on our little loveseat. He read his Kindle, I stared into space. Eventually I put on Pandora (70s Lite Rock) and even dozed off for a minute or so. Until my phone rang. It was "them," telling me that they had just begun the surgery at 9 a.m. We decided to sneak downstairs for a quick bite to eat.
      We returned upstairs at about 10 a.m. A few minutes later, my mom found us. We lost our spot on the loveseat, but Marty scouted us a spot at a round table near the TV. That was good and bad. We had more room, but we had to watch some crap throughout the day. But we also were right under the Computer Screen.
      Let me explain: You know how Domino's has its Pizza Tracker? Ochsner has its Patient Tracker. It's a big computer flat screen that shows each patient by number and where they are in their process -- "In Pre Proc" "In Proc" "In Recovery," etc.
     Lora was "In Proc" for six straight hours.... I know because, for six hours I stared at that screen, finding Lora's number each time it rolled around.
    And it was agony.
    Oh, there were updates. About every hour or so, a perky young nurse would holler out Lora's name. We'd go running. She would smile at us and say, "They are still working. Everything is fine." It scared the shit out of us! They finally stopped at about 1 p.m.
     By 3 p.m., I was about to go mad.  My husband's buddy came to visit, so he had a distraction.  My mother was watching the fish in the giant fish tank die one by one. I was staring into space and rocking back and forth, trying to keep my sanity.
    Finally, shortly after 3 p.m., the giant Patient Tracker switched from green to pink, from "In Proc" to "Closing." I nearly shouted. Then, at nearly 4 p.m., they called her name. We were ushered into a small room to wait for her surgeon to come talk to us. That really wasn't scary. By then, I knew she was OK. He was just going to explain everything. A few minutes later, in came Dr. Waldron (yay!), who was pumped and on an adrenaline high. He had Lora's X-rays and told us everything went fine. She was still on the table being tended to, but would be in Recovery soon. Then he showed us the X-rays.
    Wow. That's all I can say. Her curve went from 48 degrees to about 5. She is straight.
     "Dr. Zavatsky said these X-rays are effing awesome," Dr. Waldron said, proudly.
     "I'll say it too," I replied. Then I hugged him.
      Marty and I went back out to wait. Thrilled, scared, excited, happy, sad, exhausted I had a little mini breakdown. I was so relieved that it was over, but so sad that she had Soon enough we were called to Recovery, where we were FINALLY able to see our baby. The nurse said she was a little weepy, and had been asking for her mom. "Why hasn't my mom been here to see me? Where's my mom?" And when I walked in the room and called her "Peaches," she said, "Mom?"
     She was puffy and weepy. She kept saying she couldn't open her eyes. Her mouth felt yucky. They let me give her ice chips. She was there for a very long time. Marty and I took turns sitting with her. Courtney arrived and brought us some food, so we tag teamed to eat. Then Marty, who had been suffering with an ear ache, began feeling bad so he went home (and promptly got sick). I sat with Lora in Recovery, in a hard uncomfortable chair, and waited ... and waited ... and waited... They didn't have a room! We've been there since 5:30 a.m., how can they not have a room? It's not like they didn't know I was coming!
     At 9 p.m. I put out a plea to my friends and Prayer Warriors on Facebook and Twitter to pray that they find us a room. About 30 minutes later, we were given a number. Then, finally at 10 p.m. -- six hours after her surgery ended, we were put into a room. (I have to say, it was worth the wait! We got one of the big two-room suites! Thanks Prayer Warriors.)
     The nurses got her settled and showed me how to pull out the chair to make a bed. And I finally fell into an exhausted sleep..... Lora occasionally would wake up and want ice chips or a pillow fixed. Of course, nurses came in every few hours to check things and beepers went off every once in a while, but I finally got a little sleep. And I was back with my girl...

July 4, Day Two: The road to recovery is long and bumpy! Lora was more alert and, surprisingly, not in a great deal of pain. They constantly asked her for a number and she constantly replied a 6 or an 8 -- never higher. Sometimes she was a 3. Lora's surgeon and his residents (one of which was stunningly handsome!) came in bright and early.  "You did great," Dr. Waldron said to Lora. "Yeah," she replied. "I was hard work lying on that table for so long." My stepdaughter Courtney arrived bright and early with coffee and pancakes from McDonald's and mascara! Marty, meanwhile, was off to Urgent Care to get his ear taken care of.  Once Marty did arrive, I went home to clean up and nap. I took the hottest shower I could. And it was not a nap. It was a coma. ... Friday night was tougher as Lora began to regain her senses. But she couldn't pee. They had taken her catheter out in the morning. Shortly after 8 p.m., they had to re-cath her, which is not uncommon. She saw it as a defeat. She started wanting to roll every few hours. She wanted Diet Coke and ice chips. She was cranky. So was I. Ochsner is a "healthy" hospital. It's vending machines sell carrots. I kid you not. There is no chocolate to be had anywhere. And I let the Facebook world know it. Marty, meanwhile, was at home with two terrified dogs cowering with him because of fireworks.

July 5, Day Three: Dr. Kang is one of Dr. Waldron's residents. Dr. Kang is an early bird. He shows up at 5:30 in the morning. One of the first things they did today was remove her morphine pump. That made a WORLD of difference. She is more alert and awake today. And they removed her catheter. She ate some mandarin oranges. But she needs her pain meds every four hours. It's Saturday, so she has lots of visitors today. Her friends Cy and Devin came with their mom,  my BFF Kristal (who brought me chocolate!). A short time later, the Visiting Pet Program folks came in. Years ago when I had the best dog in the world Lollee, I would take her to Ochsner to visit the children. Serendipity. Our friends Donnie and Kaylee came to visit, and brought a BIG basket of goodies (including lots of chocolate!) But once they all left, she just crashed. And that night, we had our first melt down. Both of us. Extremely uncomfortable and in pain all night long she cried and asked why her, why did we do this, when would she get better? She was so sad and a little mean. We both cried. All my friends on the Support Group Board said Day Three was the worst. It was.

July  6, Day Four: This is the day they say gets better. They removed her catheter again. The Physical Therapy folks came in to get her up. It didn't go great. She got very dizzy and nearly passed out -- no surprise. But later, they did get her to sit in a chair for a while. Marty brought her some watermelon to eat and we filled her with fluids. My sister-in-law Lou and niece Marti came for a little visit. And Lora's  brother Daniel, sister-in-law Cori and even niece Robi came to visit. Then Courtney stayed with her for a while so Marty and I could go get a bite to eat (real food!). We also went to K-Mart to get some pajamas for her. And a really cool Spiderman blanket.
     But she still couldn't pee. All day. And she did try. And she was getting worried as her eight hour window began to close. A new nurse came on shift at 7 p.m., who said she'd give her time. Finally just after 7 p.m., she went! And the nurse and I high-fived. Later that night she was playing on her phone, eating Goldfish crackers and drinking Diet Coke. She only called me to go to the bathroom and to pack her pillows tight against her back when she rolled over. It was so much easier to turn her without the catheter and the big bag. It was a good night.

July 7, Day Five: For the last three days over the holiday weekend, Ochsner Hospital was a ghost town. The cafeterias were closed, there were no patients milling about the lobby, no one playing the baby grand piano in the lobby. Today, it was back to being a hub of activity. So was Lora's room. Dr. Kang with his 5:30 a.m. visit. Then the 7 a.m. shift change. In the middle of the night, Lora had to go to the bathroom. We had been doing great! She was up and moving and walking better. I was figuring out how to manage her little cart of fluids, her suction drain from her back and her. We had this down! But then, at about 3 a.m., she was sitting on the toilet when she started to get weak. She wanted to go lie down. Quickly. But she was going down fast. In the bathroom. I was trying to hold her up, keep her blood-filled suction thing from hitting the floor and holding on to the fluid cart. I had to pull that emergency string in the bathroom and yell for help, then hold her up until they came. They came running, and helped her get back in the bed. Scared the crap out of me. ... My plan was, when Marty arrived I was going to go home for the day. But now I'm too scared and worried. So I did go home to take a good shower and repack my bag. Fortunately, it was the only time it happened that day. While I was gone, the PT folks came and walked her all the way down the hall. (Marty did not take pictures.) They also took her to X-ray. That was a fiasco. They made her wait nearly an hour, lying flat on her back on a gurney, while they located a second technician to help with the X-ray. Marty finally raised hell. Good thing I wasn't there.... (Our only two snafus with Ochsner have been with X-ray.)
  Later that night, Nurse Christie comes in and helps clean Lora up. We get her dressed in some of her new clothes. A visit from Dr. Waldron brought good news. We get to go home tomorrow! Good. I miss my bed.

July 8, Day Six: Another bad dizzy spell in the a.m. has me very worried. If she can't walk without passing out, she can't go home. But I don't want her to go home if she's not ready. Plus, it's not noon yet. They don't know that it's way too early for Lora to be up and moving. The morning nurse is a no-nonsense kind of gal, determined to get us going. She helped me get Lora to and from the bathroom.  All of her discharge papers are done, now it's just a matter of Lora being able to walk without passing out. Her incision drain is removed (thank God. I did NOT want to go home with that thing!) They hook up her last bag of fluids. She eats some macaroni and cheese for lunch. Determined, Lora, with her dad's help, walks from her bed in her room to the chairs in the sitting room. but she doesn't stay too long. When the PT folks come, they take Lora for a walk down the hall. She stays upright. She goes back to bed to nap. I start packing up our gear.
   At about 2 p.m., we are set to go. Marty starts bringing stuff to the car -- until a nurse stops him and tells him they have a cart for that. We decide to wait until after she gets her afternoon meds so she won't hurt too bad on the drive. Then we just have to wait for someone from transport to take us down.
    Finally, about 2:30, a cute little fellow named Erik arrives with a wheelchair and a great attitude. He loads us up and is happy to help us get out of there. He's cute. He lets Lora rest her head on his stomach... I tell him he's going to be famous in a blog...
    Lora goes to get in my car and hits her head. "I really did grow!" she said. She really did. We put pillows all around her and lie her seat back a bit. She is as comfortable as she can be. I really want to put my hazards on. Or write, "Patient on Board," on my rear window. Every time I hit the brakes, she hurts.
     But we finally do get home and get her into bed. And I take a nap.

July 9, Day Seven: Marty and I took shifts through the night giving her pain meds and turning her from side to side. It's not a bad night. I'm just so thrilled to have slept in my own bed! But I am up early and ready to go for my walk. I need it! I'm tired, but it's a good one. The rest of the day is spent just trying to get Lora comfortable and get her to eat and drink. The Home Health nurse came to check her out. Her back isn't hurting hardly at all. It's her ribs. We figure it's because everything has been shifted. It's like she has bruised ribs. But it keeps her from finding comfort. She and I resume our Teen Wolf marathon. She's trying to get me through all the past episodes so that we can watch the current season together on Mondays. We both get tired easily. But Lora is thrilled when she gets a Facebook acknowledgement from Shelly Hennig, a local girl who has a starring role on the show. That made her day.
  On a sad, scary note, one of the moms in my support group was so terrified of her daughter's surgery. We all did our best to reassure her that nothing would happen. I even wrote, "Look how many of us there are all over the world and there have been no tragedies." Her daughter woke up from surgery unable to move her legs. After trying a few things and an MRI, they took her back into surgery and removed everything. She is supposed to wait six months, then go back and do it again. I am so grateful to have the surgeons we had. Both of them.

July 10, Day Eight: One Week Post-Op. I can hardly believe it's been a week already. Yet, it has been the longest week of my life The home health physical therapy ladies came by -- one of them had come to take care of Jane. They tell Lora that everything she is doing is wrong. The only way she can get comfortable is to curl up on her side in the recliner. One tells her not to do that. The other says, whatever works. Lisa, who I knew from Jane's stay with us, helps me check out Lora's scar. The steristrip on the bottom three inches has come off, which totally freaks me out. But the incision is still closed, so that's good. She also helps me brainstorm on how to wash Lora's hair. AFter she leaves, I get Lora to lie crossways on the bed and hang her head off the side. I get the hospital bucket with some water and a cup, along with the plastic covered pillow we stole from the hospital. And we manage. I only get a little on the floor. She's happy. That night, Marty has a game, so I go get us some Chinese takeout for dinner.

July 11, Day Nine: All is not smooth. Lora has ups and downs. And a few demonic possessions. The last 30 minutes before she is to take her meds are the worst. She gets mean and cranky. And mean. And she takes it all out on her mom. I can't do anything right. Everything I suggest to her, she takes as a punishment. She is hard-headed and stubborn. So am I. But she is getting better. I am getting extraordinarily frustrated. I'm trying to convince her that she has to move. She has to walk around the house. She'll never get better if she doesn't. Later that night, after we've both calmed down, she and I hammer out a schedule. She gets meds every two hours. She has to move every two hours.

July 12, Day Ten:  She's singing "I am Titanium." I think she's feeling better. After her morning meds, we figure out a way to give her a shower. I put Saran Cling Wrap -- and it DOES -- over her incision (I am pleased to report that her incision is very nice and straight. She should have a very pretty 15 inch scar eventually). I use Jane's old shower chair and get her in and out quick. The main thing is to get her hair washed. So glad I let her cut it before her surgery. Then,  I spend nearly the entire day floating in my pool. We order pizza for dinner and watch a little Teen Wolf.

July 13, Day 11: Lora is able to get up out of bed on her own. After a few days with my assistance, she now goes to the bathroom on her own. She still struggles to get in and out of the recliners and to find a comfortable position. But she is eating much better. Her ribs still hurt her a great deal, which worries me a great deal. She spends most of the day in her room. Marty heads off to the ballpark. I haven't been out of my house since Tuesday. The only place I have been is the hospital and CVS. I'm going a little stir crazy. Her BFF (and mine) come for a little visit, which perks her up a bit. She and Marty try to cheer me up by watching "Dirty Dancing" with me. We have a whole list of movies to watch. We'll never get to it.

July 14, Day 12:  Well, I spent most of the day doing this thing, trying to remember what happened when. What day did they take the catheter out? When did they put it back in? When did she pee? Yes, the days all blur together after a while. Lora's two physical therapists came today to get her moving. We also spent much time trying to get her bowels moving. We finally did! Another WIN!
    Today was also the last day of me having just one patient. Tomorrow morning, I take my husband to another hospital for 5:30 a.m., where he will have his much-anticipated knee replacement surgery. I am not nearly as nervous for him as I was for Lora. In fact, I didn't even think about him much over the past few months. Sorry, babe. I'm more worried about the aftermath. He's going to be a much bigger baby than Lora, I just know it. And I'll be worried about Lora every minute.
     Say some prayers for all of us.

July 15, Day 13: Another day, another 4 a.m. wakeup call, another hospital. This time, it's Marty's turn. Knee replacement surgery. His knee is almost a crooked as Lora's back. The difference is, he has been in extraordinary pain for quite some time. I was one of the (several) reasons he decided to give up his baseball team this season.

So, we get to River Parishes Hospital in LaPlace at 5:30. No, this isn't big ole Ochsner Foundation Hospital. We got there before the lady who was supposed to check us in! At least I had the waiting room to myself for most of the morning. The little volunteer lady still turned the TV on, however. LOUDLY. So I pulled out my trusty Kindle and my earplugs and watched some more Teen Wolf.

Marty did great. He was out of surgery in about two and a half hours. But once he got into recovery, he started to complain about pain. So, they pumped him full of codeine -- which makes him throw up. And he did. In fact, he spent most of the day sleeping and being sick. Finally they gave him some Phenergan, which stopped his nausea. Then he wanted French fries.

I did stay with him for most of the night. I intended to stay the whole night. But my blue chair at RPH wasn't NEARLY as comfortable as the one I slept in for five nights at Ochsner. So, at about 1:30 a.m., I went home to sleep in my own bed. He was in good hands.

July 16, Day 14: Lora, meanwhile, is still having a rough time. Her ribs are hurting her tremendously. She can't sit up in a chair at all, can't sit at the table, and the quickie showers we took have been very painful. And her bandage is in shreds. I've taped it as best I can. I sent an email to the doctor's office (just one of the MANY things I love about Ochsner and Dr. Waldron! He actually answers them too!) and they asked if I could come in on Wednesday. I agree gladly. She had back-to-back appointments scheduled with the two surgeons on Thursday and I was trying to figure out how -- and if -- this child would survive a trip to Ochsner and to Baptist Hospital, with stays in two waiting rooms, in one day.

Her physical therapist came in the morning too. She and I then got creative to give Lora a bath. I brought my anti-gravity lawn chair in from the pool (and looked longingly at the beautiful blue water...) and put it next to the tub. Then we got Lora in it and had her hang her head over the side so I could wash her hair. Hey. It worked. We sponged the rest. Getting her dressed was a huge ordeal as well. She has to go braless, which she did not like at all.

Then I packed the passenger seat with pillows and we headed off. It wasn't too bad. But once we got to the clinic, she got worse. She got dizzy walking in and had to sit down, and her ribs hurt so bad she had to lie down on the bench to wait for them to call her. I was worried to death.

But the visit went well. Dr. Kang was there, along with another resident I didn't know (not the stunningly handsome one from the hospital, though, darn it). They admitted they had read this blog and watched the slide show and were going to give Dr. Handsome a hard time about it. Hey. Mom's have to find their moments when they can, you know?

They checked out her incision (nice), asked if she had pooped yet (yep) and some other questions. Told her she could shower! (Yay!) We discussed the rib pain and Dr. Waldron decided to change her from Valium to Flexeril. He also suggested she get a lumbar corset to help stabilize things.

So, on the way home we made a stop at an orthopedics store and they fitted her for a corset. It's pretty much the kind you see in Gone With The Wind, but with velcro. The nice man put her in it and tightened her all up and she felt great. She actually sat on the little sofa with no pain. But on the way home in the car, it started to bother her, so I unsnapped it. Now, I can't get it back on her. It's a good think the Flexeril worked!

After a nap, I headed off to check on my other patient, who was having a party in his room with his buddies.

July 17, Day 15: We are officially two weeks post op! And what a good stay it started out to be! First, Lora woke up and said she had no pain. She had taken her Percocet at 4 a.m., then nothing else. She was content with just some Advil. Yay!) Also, she was able to shower on her own. (Yay!) (I did shave her legs). Surgeon No. 2 saw in the computer system that we saw Dr. Waldron on Wednesday, realized he was redundant and had his nurse call us to cancel (Yay!) Also, patient No. 2 is coming home today! (Yay!)

I got Daniel to come with with Lora so I could go get Marty. Got to the hospital at about 1 p.m. The problem was, he did not leave until after 6 p.m. The doctor was in surgery and didn't get to see him until 4 p.m. Then, after telling us it would be about 10 minutes, it took TWO FRICKEN HOURS for them to get his discharge ready, at which time the nurse came in and repeated everything the doctor had just told us.... I was livid.

Then came another trip to HELL -- also known as CVS pharmacy. Marty's friend Bill drove me there to drop off his prescriptions, then we drove back to LaPlace to Big Lot's to buy him a chair with an ottoman for his Cave Room (where he will be spending the next four weeks or so). Then we drove back to the drug store where, his drugs weren't ready. Really? Really. That place is going to make me go postal one day.

By the time I got both my patients drugged up and tucked into bed, I was too tired to move.

So, I guess this story is going to get pretty boring now, so I won't be updating it much -- except for milestones. Lora's, not Marty's.

The whole reason I wanted to do this, and Lora agreed to let me, is because I know there are other moms and dads out there who are about to go through this process. Maybe this will help ease their fears. I hope it doesn't scare them to death.

There are bumps along the way, but I think Lora's road to recovery has been fairly normal. She's still very impatient, wanting to know when it won't hurt anymore, when she'll be able to do things the way she wants to do them. She gets weepy sometimes and throws herself a pity party. That's all normal too.

I want to say that Pediatric Orthopedist Dr. Sean Waldon is the bomb. He was gentle and kind and funny and patient and let me ask all my stupid questions without making me feel stupid. And he read my blog. Dr. William Kang was pretty cool too, except at 5:30 a.m. And nurse Hannah is the absolute best. I can't say enough about the Ochsner experience -- except for the radiology department, which needs to get its act together.

I also want to send a shout out to the Facebook group Scoliosis Parents Support: Strength in the Curve. It's made up of a bunch of parents from around the world whose kids have been through it or are about to. Those (mostly) women were enormous help to me, telling me what questions to ask, what to watch out for, what to ask for, what to bring to the hospital and giving me endless tips,  and suggestions. They were all there with me on July 3, holding my hands through cyber space and praying for my daughter. And we all rallied around the mom in England whose daughter did not have a successful surgery (but I am happy to report that she is moving her legs and sitting up now). I hope to remain an active part of it to help the next moms.

I was absolutely terrified of this thing. I didn't sleep for months. I had a bonafide panic attack the week before. I didn't want to do it. I didn't want her to have to go through it. It broke my heart. But we came through to the other side in one piece. One bionic piece. We made it. And I am so glad it's over.

Lora's July, 2014 growth chart ...

And here is the guy who got her all straightened out! Dr. Sean Waldron. Can't say enough good  things about this guy!
We are so blessed and forever thankful for him. 
Lora's BEFORE on the left. After 6 months on the right.