DAY ONE/TWO

Friday, June 15, 2012

Last night was a good night. The nurse only checked Sydney's vitals every four hours so there was not as much disruption. They still came in and turned her every two hours but that only takes a few minutes. I got more sleep which I think was from sheer exhaustion. We have a new nurse today, Kelly. She had a spinal fusion when she was younger so she knows what Sydney is going through. Sydney is much more awake today. The tube in her throat is bothering her and she says it hurts to talk. Dr. Fornari was in this morning and took out the drainage tube from her incision. They turned off the suction from her stomach tube. If she goes a few hours without getting nauseous they will remove the tube completely. Dr. Fornari says the goals for today are to remove the tube, get something in her stomach and have her stand and take a few steps. That sounds like a lot to me but they want to push her a bit so she can start moving around.  Mrs. Keyte, her piano teacher, came by around 9:00 a.m. to see Syd. 

She is sleeping the majority of the time but wakes up more often than yesterday.  They took the tube out!  That was a big relief for her.  At 12:30 Sydney got up, stood and then took a few steps to a chair. She sat in the chair while the nurse changed her bed. They gave her an anti-anxiety drug (Ativan) about 30 minutes before she walked.  She was naturally afraid that it was going to hurt. Once she did it she said it wasn't as bad as she had thought it would be.

 
Caroline, Jordan and Garrett came by for a visit around 1:00.  Syd was pretty wiped out from the Ativan and from getting up so she wasn't very awake while they were here.

After they left my Mom and Bryan came and brought us lunch. We're now officially in to day two of post op.  Brad, Rene, Jake and Jordan came by for a visit. Syd was still tired but was able to say hello.

 
After they left we ate lunch and then Kim and Maddie came. While they were here Tara came too. We all visited for a while and Syd slept.  I think the Ativan really relaxed her and made her very sleepy.

 
Tara left and nurse Amy came to check in.  She gave us more reassurance that Sydney was right on track in her recovery.  Dr. Newton stopped by around 5:30 or so. He said she looks great. He wanted her to get up and walk again. First he said, "Maybe we'll try walking again later today" and Sydney said "No".  We all kind of laughed and then he said "Let's rephrase that.  Later today you will be walking again".  She wasn't thrilled but didn't argue.  After he left she ate a bit of apple sauce, a bit of a red Popsicle and drank some Sierra Mist. The nurses came in and helped her sit up, stand and take a few steps. She sat in a chair while they changed her sheets. My mom, Bryan, Kim and Maddie were all here to see her. They left shortly after that and she went back to sleep. She woke up a while ago and ate a little more apple sauce and had something to drink. It is 8:10 now and she is sleeping on and off. Brian and Jack are heading home and I think there will be no more excitement tonight. This was a big day.

DAY ZERO/ONE

Thursday, June 14, 2012

The nurses tell us that this is still considered day zero until 2:00 p.m.  After that we are on to day one post surgery.  Sydney is VERY sleepy today.  She does not wake up or talk much at all.  Dr. Newton and Dr. Fornari come by around 1:00 p.m.  They say she is doing just as they expect her to be doing and I say if they are happy, I am happy.  This is all new to me and they have seen this many of times.  Brian and Jack arrive around 8:30 a.m. and then go get us coffee and breakfast.  The nurse, Marie, had given me a much appreciated (but weak) cup of coffee early in the morning so the stronger stuff tastes good.  I feel I really need it too because the two prior nights I have not slept much at all.  Today we basically just hang in the room all day and stare at Syd. Nancy and Peggy stop by on their lunch hour and bring a pink bear and scarf. Syd opens her eyes and says hello but that is about it. They stay and chat with Jack and I for a bit and then head back to work.

My mom and Bryan arrive and shortly after so does Casey.  Sydney opens her eyes for them too but not much else.  She's not in a lot of pain, just wiped out. Later the pain management rep comes in and decides to lower her dose of morphine a bit to try and get her to wake up some. It takes a while but by the evening she is a little more alert.  My mom, Bryan and Casey stay and talk for a while and after they leave it is just the four of us again. Jack stays all day and never leaves me or Syd. Even when Brian goes for a walk or to run an errand, he wants to stay.  Before the surgery one of the many things on my mind was how Jack would deal with all of this. We spend a lot of time together and I didn't know how he would do with our routine being disrupted.  He has decided to bring our routine to the hospital and just stick close together. He has many options but wants to be here. I must say I am grateful for that because he is a lovely distraction and I would miss him terribly. He designated himself as the one to feed Syd her ice chips and cool down her wet washcloth when needed. At first she said thank you and today she has been telling him "no" and to stop. That's progress!  It's sweet to see him doing what he can to take care of her.  We all feel like we want to do something.

 
She is not loving the breathing toy she is supposed to do several times an hour. When she is awake I get her to do it but she says it hurts her chest.  The pain management rep is adamant she do it to prevent her from getting pneumonia. In the late afternoon it's time for Syd to sit on the edge of the bed for the first time. She doesn't really want to but they do it any way. The nurses provide a lot of assistance. They roll her on her side, slide her legs over the edge of the bed and pull her straight up using the sheet and pad underneath her. Sydney's face looks puffy from all of the fluids and she doesn't seem sure what to think. They make sure she keeps her eyes open so she doesn't get too dizzy.  She lasts about 30 seconds and then wants to lay down. Apparently this is normal and they say she did well.  

 
As she's waking up a bit more the tube running up her nose and in to her stomach is bothering her. It runs down her throat and she can feel it there. They are not ready to pull it out yet because there is still bile being sucked out of the stomach and they want to make sure it is all gone first. Sometime tomorrow they may try to stop the suction for four hours. If she can go all that time without getting nauseous then they will remove the tube.   I lay down around 5:00 and take a short nap. I'm tired and I don't know how much sleep I'll get tonight so I get it when I can. Brian goes to Islands and gets the three of us dinner. He and Jack leave for home around 8:00. They stop by my mom's for Gracie and Jack says she attacks him she is so excited to see him. I take a shower and make up my bed for night two. Sydney is sleeping and comfortable so I crawl in and watch t.v. until I fall asleep.

 

SURGERY DAY

***Every night in the hospital I took some notes on my ipad about what happened that day so I wouldn't forget. I'm copying them to this blog for documentation.  To start at the beginning of our scoliosis journey go here.

Wednesday, June 13, 2012
Sydney, Brian and I arrive at the hospital at 5:30 a.m.  We check in, sign papers and then meet with nurse to check vital signs, etc.  

Next we meet with Dr. Zimmerman, the anesthesiologist, and Randy, the OR nurse.  Sydney is very nervous and is crying when it is time to leave us and walk back to the OR.  Dr. Zimmerman senses her fear and puts his arm around her as walks her back to the OR.   It was very comforting for me to see him assuring her on that very short (but very long) walk away from us.  

Brian and I go to the waiting room and within five minutes the nurse pages us.  My heart races as I envision Sydney being the first kid to not be able to be put under anesthesia or something crazy like that.  Luckily we were only paged so we could meet with Dr. Newton before the surgery.  We talk with him for a few minutes and he reassures us that she is already asleep and ready to go.  We leave him at about 7:30.  We wait.  Brian paces.  I can't even focus on a magazine so I sit and vacillate between hope and fear.  My mom and Bryan arrive and about five minutes later, at 10:50, our pager goes off.  We were prepared for the surgery to last five hours so when we get paged at less than 3 1/2 hours we are caught off guard.  They tell us at the desk that she is out of surgery and lead us to a room where we wait to meet with Dr. Newton. I am relieved it is over but want to see Dr. Newton and hear him say everything went well.  He comes in within five minutes and tells us everything went perfectly.  We go back out to the waiting room and wait until we can go back and see her in recovery.  Nurse Amy comes to see us and brings us the before and after x-rays. 

About 12:30 I get to go to recovery and see her. She looks better than I expect. Her face is not too puffy and I think it is because the surgery is shorter than expected. She has a tube in her nose going to her stomach and an IV in both of her hands. She also has a drainage tube coming from the incision sight. She is very groggy but definitely acknowledges me and we talk a bit. She is "dying of thirst" and wants water.  She's not ready for that yet but they let me soak a little sponge in water and give it to her. I wipe her face with a cool washcloth.  As difficult as it was to see her so sedate and hooked up to all of the machines, I am able to breathe a sigh of relief knowing that the surgery part of the journey is over.

Around 2:15 she gets moved up to her room (3114) and my mom and I ride with her in the elevator.  Our neighbors, Rodene and Jeff, have arrived and are downstairs.  They come up with Brian and Bryan when we get to the room. We meet the nurse and Syd says her pain level isn't too bad - about a 6. The nurse says Syd can have some crushed ice so we feed her some.  Rodene and Jeff leave and shortly after that Kim, Kyle and Maddie arrive.  Then Casey comes with Jack, Kenny and Leah. For a while there are a lot of us in the room. Dr. Fornari, who was in the surgery with Dr. Newton, comes by to check on her. He says everything looks good and to let her rest. He gives her "homework" which is a device she has to breathe in and out of to work her lungs.  While he is there Syd throws up and she jokes that he is "bad luck".  The nurse cleans her up and turns her on to her other side for the first of many times.

Around 4:30 or so everyone is gone except the four of us. Syd is sound asleep. The nurse says that is good because she is comfortable enough to sleep. The pain management team rep comes in and while she is there Syd calls me and says she needs to throw up again. She dry heaves but nothing is there.  She goes right back to sleep. They prescribe her an anti-nausea medicine. She also has a morphine drip with a button to push for more if she is in pain. By 6:00 she has pushed it about five times - not too much.   Brian and Jack get us some dinner from the cafeteria and we eat in the room. Around 8:00 or so they leave to go home and get some sleep. Gracie spends the night with my mom. Sydney has a good night but the nurse is in and out a lot. Every two hours they reposition her by rolling her to either her side or back.

It is a relief to have the actual surgery complete.  To me, the unknown is the most worrisome part.  At least now we know what we are dealing with and can work together day to day to get through it.

A FEW FINAL THINGS BEFORE THE BIG DAY

On Thursday, June 7, 2012 we met with Dr. Newton for our pre-op appointment.  Before our meeting Sydney had to get final x-rays done.

This cool machine is made especially for kids with scoliosis.  It gives the doctors a three-dimensional view of the back which makes diagnosis easier.  The best part is that it exposes the kids to a fraction of the amount of radiation that a traditional x-ray does.  Kids with scoliosis must have multiple x-rays throughout their lives so this aspect is very important.

Dr. Newton briefly went over what to expect from the surgery and answered all of our questions.  He assured us that everything would be okay and he has a way of making me believe him.  That really helps.

Dr. Newton, along with a group of other surgeons, have a study group dedicated to improving the treatment of spine deformities in children.  It's called Setting Scoliosis Straight.  Sydney agreed to participate in the study, so after we met with the doctor a representative came in and took pictures of Syd's back.  They will continue to take pictures of her at her check ups and follow up with her for 25 years.  The idea is to study the long-term effects of spinal surgery.  I'm glad she agreed to participate because I think this is valuable information for both future patients and the doctors that are trying to better the treatment options.

On Monday, June 11, 2012 Sydney had to have some pre-op blood work done.  This went smoothly because she had done it before and knew what to expect.

After that, she took a pulmonary function test.  This involved her going in to a chamber and breathing in to a special devise.  The tech measured her lung function based on how she performed the breathing tasks.

This concluded all of the pre-op appointments!  We now had one full day before the surgery was finally here.

11 DAYS

The surgery is coming up on Wednesday, June 13 at 7:00 a.m.  We have to be at the hospital to check in at 5:30 a.m.  The four of us went to the hospital yesterday and met with Dr. Newton's nurse, Amy.  She took us on a tour of the hospital showing us where to check in and where Brian and I will be waiting during the surgery.  She also showed us where the OR is, the recovery room and the room where Sydney will be for the rest of her stay.  We are fortunate that Rady's has a new, state of the art, facility that has all of the latest and greatest technology including an OR specifically for spinal surgery.

Last week Sydney had some blood drawn to determine her blood type.  We found out she is A+.  Brian was able to go on Wednesday and donate a unit of blood for her.  His blood type is O+ but apparently with A+ blood anyone with A+, A-, O+ or O- can donate.  He donates to the blood bank on a regular basis so it worked out well for us.  We are thankful to everyone who volunteered to donate if neither one of us were a match.

We learned some things yesterday that made Sydney feel a little bit better.  First, there will be no external stitches on the incision.  They will all be internal so she will not have to have them removed.  Second, she has the option of being put under anesthesia with a mask and then having the IV hooked up while she is already "asleep".  She had been concerned about having the stitches removed and having an IV put in so this was a relief to her.  Third, she can bring a stuffed animal or favorite blanket with her in to the OR which is definitely a comforting thought.  Lastly, they have therapy dogs that go around and visit the patients!  Nurse Amy asked Sydney if she liked dogs, which is like asking Sydney if she likes to breathe.  Anyone who knows Sydney knows that if you give her a dog or a baby she is happy.  So when we check in we can let them know she is interested in having a visit from one of the therapy dogs and they will bring one to her room.  

We are scheduled to meet with the surgeon on Thursday to discuss the specifics of the surgery and get any of our remaining questions answered.  At that appointment they will take a final x-ray of Sydney's back and some "before" pictures.  She still has a pulmonary test to do but we are waiting to hear from their office so we can get it on our calendar.  On the Monday prior to the surgery she will have to go in for more blood work.  That will be the last thing we have to do before getting to the hospital on Wednesday morning.

She will be in the hospital any where from five to seven days after the surgery.  We are told that by six weeks post-op most patients feel back to normal.  It will be one year before Syd is released to do whatever she wants but she will be able to be active much sooner than that.

It's all very real now and the anxiety level in all of us is definitely rising.  Brian and I were reminded by our visit to the hospital yesterday just how lucky we are to have Children's Hospital here in San Diego.  We feel fortunate that if we must go through this we have a facility near by that is equipped with doctors and staff that specialize in working with children and their families.

I, for one, will be glad to be on the other side of the surgery and updating on the progress Sydney is making in her recovery.

THE LATEST

I spoke to Dr. N's assistant and we scheduled the date of Sydney's surgery for Wednesday, June 13, 2012.  That is the soonest available date.  I was hoping we could get in sooner so it doesn't have to loom over us for so long but June was the earliest.  I am waiting to receive a packet in the mail with all of the necessary information regarding what must be done prior to surgery.  It is my understanding Sydney will have to take a pulmonary test and once we determine her blood type someone who is a match will have to give a unit of blood.  She cannot donate herself because there is a weight requirement that she does not meet.

I also scheduled a pre-op meeting with the surgeon for two weeks prior to the surgery.  At that point all of our questions will be answered.  We're beginning to compile a list of things to ask.  Sydney wants to know how long it will be until she can play piano, swim, etc.

In the mean time, we've been keeping very busy and Sydney does not seem overly preoccupied with the thought of surgery.  As the date approaches I know all of our worry levels will rise but for now we are taking it day to day.

After all there are still lawns to mow: 

And piano recitals to perform:

And, of course, baseball to be played: 

LET'S START AT THE BEGINNING

The reason we decided to share information this way is because Sydney does not necessarily want to spend a lot of time talking about this and she was concerned about how to let people know without actually having to tell them.  We thought this would be a great way to keep everyone up to date with what is going on.  It will also help me to remember all of the details that I will surely forget when this is all behind us.

Sometime in the middle of 2011 Sydney complained of her back hurting while she sat and practiced piano. I took her to the chiropractor with me on my next visit, he looked at her back and told me she had scoliosis. He recommended that we make an appointment with her primary doctor, which we did. Her doctor confirmed the scoliosis diagnosis and referred us to an orthopedic surgeon at Rady's Children's Hospital. We had to wait two months for the appointment despite my frequent calls to see if we could get in any sooner.
We had our appointment on September 21, 2011. At that time they took an x-ray of Syd's back and told us that she had a double curve with a thoracic curve of 34 degrees and a lumbar curve of 39 degrees. We were told that she could wear a brace to try and prevent the progression of the curves but the doctor said there was about a 50/50 chance of it helping. She was not a candidate for surgery at that time because her curves had not yet approached 50 degrees. Neither Syd nor I got a great feeling from this doctor and definitely felt like he threw this information at us and that was it. He didn't explain much to us and I personally didn't think he handled Sydney very well considering she was 11 at the time and he had just delivered some pretty scary news. He is probably a wonderful doctor and surgeon -- just not our style. We saw the x-ray for the first time also and it was a little shocking. He ordered an MRI so that they could have a better look at her spine.

We scheduled the MRI, Sydney got fitted for the brace and I began searching for someone to give us a second opinion. That's when I found our current doctor (Dr. N) who is the head of the scoliosis department at Children's. I made the soonest appointment I could and we saw him in December. In the mean time, Sydney went and got a full spine MRI. She did remarkably well considering she had to lay in the small tube for 45 minutes and not move (or talk!). They allowed me to be in the room with her and she was able to watch a movie through special goggles they gave her, although the machine was so loud she said she couldn't hear the movie anyway.

After the MRI we received a call from the doctor saying that they saw something that concerned them and wanted us to go see the neurologist. We made that appointment and I continued to remind myself to take deep breaths. :) In November we met with the neurologist who thankfully said that he saw nothing to be concerned about and that Sydney had a beautiful spinal cord. Exhale.

In between all of this I am trying to find the balance of doing enough research to be somewhat educated about what is going on with my daughter and yet not reading too much because the internet can be a scary place when you google certain things.

When we finally met with Dr. N in December he discussed scoliosis with us more thoroughly and explained what we were seeing on the xray. He discussed our options, which were few. We could do the wait and see method or Sydney could decide to wear the brace. We met him on a Friday and the following Monday we were scheduled to go pick up the brace. Dr. N was even less encouraging about the brace then the first doctor indicating that there is no hard evidence that wearing the brace actually stops the progression of the curve. Many people spend years in the brace and then end up having to have corrective surgery anyway. He gave us a very low percentage chance that it would do any good. For some it helps and for some it doesn't and nobody knows why. I felt as if it was being offered as a way to make us feel like we could try something. Based on our discussion, Sydney had pretty much decided not to wear the brace. I told her that I still wanted her to go and get it on Monday since she had already been fitted for it and it was there waiting for her. She did not even want to see the thing but I wanted her to see it, try it on and make an informed decision before dismissing the idea all together. We went on Monday and picked up the brace. I'll tell you it is very large and bulky and Sydney had a hard time relaxing while she had it on which made it very difficult for her to move. This confirmed her decision that the odds would have to be much more in her favor in order for her to wear the brace. By the way, she would have had to wear it for at least 20 hours a day.

Once that decision was made, we were in the wait and see what happens mode. We had a follow up appointment scheduled with Dr. N in March 2012 to have a new x-ray taken. It was six months after the initial x-ray back in September. Sydney continued to do well with her back as far as having no pain or discomfort. Physically, it is most notable when she leans over to touch her toes. Not only is her spine crooked but her ribs have rotated slightly which causes the upper right side of her back to protrude and the lower left side to be a bit concave. One hip is a little higher than the other and one shoulder as well. Despite having a rather large curve in her spine, I believe if you saw her you would never even know she had scoliosis unless you really looked for it. During this time we joined the YMCA and she began to take swim lessons. We were looking for some form of exercise that would be good for and easy on her back.

On March 8, 2012 we went for the follow-up appointment. Another x-ray was taken and the news was not so good. Her curves had increased significantly in the six months since her prior x-ray. They are now at 41 degrees (thoracic) and 49 degrees (lumbar). The doctor says she needs surgery. He says she still has a lot of growing to do and her curves are most likely going to continue to get larger and larger. So that's where we are. There are not a lot of options here. The only proven way to stop the progression is surgery. The good news is that the surgery will do a lot to straighten out the curve that is already there. Her spine will not be completely straight but much straighter than it is now. It's a major surgery and not what any of us wanted but we don't get a say in that do we?



We happen to think she is perfect, inside and out.