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.

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.