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Scoliosis and your Family

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SCOLIOSIS AND YOUR FAMILY

A FAMILIES JOURNAL OF COPING WITH IT

This is our families story of our 10 year old daughter being diagnosed with scoliosis.

Today's date is September 19, 1996. We decided to start this page for other families who are in the same situation we are. Our daughter Jackie's, surgery is scheduled for November 5th 1996, (surgery was completed January 14, 1997) so as you can tell, we are, I guess you could say dealing with it at the present time.

In the up and coming months, this page will be updated daily, as to the progress, the bad times, the good times, and over all occurrences that we go through. Pictures will be added on another page, but will only be accessed, after we have spoken to the person that wishes to view them.

Our daughter also wishes to participate in helping other children deal with the fears, feelings, and the specifics on what she is going through. We as parents, also want to be able to help other parents that are going through the same ordeal, cope with this terrible thing that has afflicted our family!

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OUR DAILY JOURNAL

We have to go back a bit, seeing we are starting this after the fact.

We will start by explaining a little bit about ourselves. We are Chris and Anne. We have 4 children ranging from 11mo. to 14yrs old. We live in New Jersey, near the shore.

We are an average family, living an average life, enjoying the time we have together, seeing we both work to make ends meet.

We have started this journal as an aid for us to openly talk about our experiences with our daughter being diagnosed with scoliosis, and to hopefully help other parents and children, understand that they are not alone going through this horrible experience.

THIS IS HOW IT IS HAPPENING

June 10th, 1996

Jacquelyn 10 years old:

The school nurse calls from Jackie's school, to let us know that a small curve was noticed during a routine scoliosis screening, in school. She recommended that we take her to our family doctor to just check her out and make sure that everything is OK. (Notice how the nurse states SMALL curve.) No problem most kids have a small curve. Right?

July 23rd, 1996

We have our visit with the family doctor. He says Jackie has a mild curve, but we should have it x-rayed just to make sure. He gave us the prescription and off we went to schedule the x-ray. (again, please note the term MILD.)

July 27th, 1996

X-rays today, no big deal, take the pictures and wait.

August 6th, 1996

Today started out great, beautiful weather, just an overall great day. The call came next. Our family doctor called and said, Jackie's curve is more serious then expected. Now the horror starts! He recommends that we seek a specialist in orthopedics, since it is so severe and unusual. We all flipped out, what do you mean unusual for her age? What do you mean severe? What is going to happen next? He would not elaborate any further. Did he know? Did he not want to tell us? WHAT IS GOING TO HAPPEN NEXT??? Our doctor gave us three options: New York, Philadelphia, or Delaware. He said one of his acquaintances daughter had scoliosis and went to Delaware. So, Alfred I. DuPont Institute for children in Wilmington Delaware was the choice.

September 6th, 1996

Today was Jackies appointment at Alfred I. DuPont Institute for children. The hospital was beautiful, the entrance way was filled with Teddy bears and such, the atmosphere was great even for a place that was going to decide where we were going from here. Our appointment was for 9:00am, we got there about 15 minutes early, amazing seeing the drive was 2 and a half hours long. We were directed to where we need to go to wait for our appointment.

We waited in the waiting room for 1 hour before we were called in to see the doctor. We were put in to a exam room to wait for the doctor. No one even popped their head into the room for the next hour and a half. Our nerves were shot! The first one to come in the room was an intern seeing this is a teaching hospital that was fine but we wanted to see the doctor we had the appointment with. The intern came in the room exchanged pleasantries and went on to examine Jackie. He looked at her and said something like I looked at your x-rays you brought in and you are not going to be happy with us. Now that was it, the tears came minds stared racing. Jackie really broke down, we started thinking so this is how they break it to you huh? He started to redeem himself seeing what he did and it didn't work he left. A few minutes later Dr. Richard Bowen came into the room and immediately took over explaining the situation with Jackie and really talking to her calmed her down. He explained about the curves in the spine and told us that Jackie had two curves and the one at the top of her spine was 110 degrees! Now seeing that the school nurse, school doctor, and family doctor all said minor curve we just about passed out. How could we as parents let a problem like this go, went through our minds so we asked him how.

He said that Jackie has two curves and when one curved the other compensated for it, making it undetectable by normal sight. I guess that was supposed to make us feel better, but there was nothing that could put us back in time to change it. after explaining it to us he said he needed to have an MRI done so he could see more than what was in the x-rays. He told us we could have it done where we live to try to save us some driving. He also told us he needed to sit down with him for about an hour and a half so he could go over the entire process and he wanted Jackie there, so we went to his secretary to get all this stuff scheduled. Anna Marie, Dr. Bowen's secretary was great even though she was sick and could barely talk, she was fantastic she also explained to us that Jackie would need to give her own blood for the operation so there would be no problems, that meant another three trips to the hospital. After everything was scheduled we headed to the financial aid department for those of you who know about that , we won't get in to that right now, thats a whole story in it self and we are not doing this for handouts.

September 16th 1996

Today is the day of the MRI. Jackie is going to be in this tube for 4 hours to have all sorts of special x-rays taken, she is scared to death, all these things happening to her and she feels fine, her one shoulder is a little lower than the other one so why should she have to go through all this.

The MRI done, Jackie did great nothing painful she even fell asleep in the tube she thought it was fun.

September 19th, 1996

Today is our visit with Dr. Bowen. He is going to explain to us the procedure on what Jackie is going to have done. We took our Aunt and Uncle with us seeing he is a retired physician and since we have to try and be strong for Jackie, and be there for her when she needs to talk, we felt we needed someone as well to help us and be there to talk to. Trying to be strong and confident for a 10 year old when you have so many fears yourself, is rather difficult. Anyway the meeting went on with Dr. Bowen explaining in detail how the surgery is going to tke place, and he did a fantasic job of explaining, but he through in a couple items we didn't expect or plan for. We came to grips with the idea of surgery, go in straighten the spine, attach the rods, bing, bang, boom it would be done. We were wrong again. Jackies surgey would actually have to consist of three different operations. One would be to straighten the spine from the back and fuse it with the rods, second would be to go in from the side and fuse the spine from the front. The reason for this is that when the spine curves it also twists, and stopping the spine from curving in the back will not stop it from twisting. Another doctor will be used for this part of the surgery because it will be tried with a scope first to avoid any additional large incisions(we will get to the other doctor in a minute), if they can not see enough with the scope they will have to make the incision anyway. The third part is that part of her ribs on one side need to be trimmed back, as they have grown bowed due to the curve. (If you would like to know more about the surgery in detail, please drop us a note because trying to sit her and collect it all in thought is tough.)

At the end of the meeting the secretary comes out and speaks to us about the surgery date and says that she is having a little trouble getting the other doctor scheduled in the operating room the same day as November 5th but she would let us know. But the date might change. Holy smokes what now??? We go home and wait.

October 9th, 1996

For the past couple weeks we have been in contact with Anne Marie and she is still trying to confirm the appointment date with this other doctor, but hasn't said the date has bee changed. Today is the day Jackie is to donate her first series of blood, Anne packs up with Jackie to make the trip to Delaware, drop the baby off at the sitter first and make the drive. Chris had to work and wanted to save his time for the week or two he would need off for the surgery. Well Anne goes all the way to Delaware and they won't take the blood because the surgery date is not confirmed and the blood would not be any good if the date was moved beyond 35 days. UNBELIEVABLE! What next.

November 3rd, 1996

Well as we update this today, a couple of weeks ago they wanted to schedule this for December 18, which would mean that Jackie would most likely be in the hosital for Christmas, and with three other children to think about how was this going to be possible. We asked since they have already waited this long what difference woul the first of the year make? We are still waiting and have no date for the surgery. We will kep you updated as things change, hopefully this week we will have a date.

IMPORTANT: We just wanted to put a note in here that even though we have made some comments that sounds like the hospital is not helping, we feel very comfortable with the doctor and his staff that, we would not change because of these reasons. It is just very troublesome when the care of your children is involved, and your hands are tied.

December 5th, 1996

Jackie's surgery is now scheduled for January 14th, 1996. The blood donation and so forth starts next week, as well as the anxiety that goes along with it. we will keep you up to date on the happenings as they occur.

December 11th, 1996

Tomorrow is Jackie's first day to donate blood. It makes the surgery a reality again seeing it is just around the corner. Anne will make the trip to Delaware with Jackie by herself since Chris can't afford to take a day off, he is saving those for the final blood donation when we talk to the anesthesiologist, and pre- surgery physical, and the week of the operation. Tensions and nervousness starts up again, and with Christmas a couple weeks away doesn't make all this seem possible. We will let you know how it goes tomorrow when they get back.

December 12th, 1996

Today was Jackie's first blood donation. Needless to say she was very nervous. After she got in there she settled down a bit and she said it really wasn't that bad. She thought that when they stuck her finger to test her blood, was worse than the actual donation. So now we wait for the second, on the 19th.

December 19th,1996

Today the second donation went better than the first, not that the first was that bad but, knowing what to expect made things a lot easier. December 30th, 1996

Today was the final blood donation, and went fine. Ken the man who drew the blood was fantastic. The way he handled Jackie was amazing. The difference between the staff at a children's hospital and a regular hospital is night and day. They really know how to deal with the child more so than the parents. Today was also her pre-op physical and blood work. The nurse Sharon, in POPS (pediatric outpatient surgery) talked directly to Jackie, and explained what was going to happen on her surgery day. We also met with the anesthesiologist, who explained that procedure as well. Now we go home and wait for the 14th, which seems to be coming to fast for all of us, not to mention how fast it must be coming for Jackie.

January 13th, 1997

Today is the day before surgery. Anne's Father, her two brothers, and her sister came in from out of state. It is so nice to have the support. The phone rang off the hook for Jackie all day, we never knew she had that many friends. We had to stop the calls around 10:30pm, but it did her some good. There is a strange feeling in the house tonight, I think it must be everyone thinking their own thought, concerns, and so forth, dealing with this in their own way. We have to leave at 4 in the morning to get to the hospital on time, but getting to bed early seems out of the question. Anyway we will write more tomorrow.

January 14th, 1997

The day is finally here, it seems like yesterday when we found out about her scoliosis. Who knows where the time goes? We got to the hospital and we all have this ache in our stomach from nerves and hope everything goes fine. When we got up to POPS they took us in immediately, Jackie got changed they took her blood pressure, temperature and told her they had to draw more blood to check the match between the blood she donated and the new drawn blood. They took us in another room and gave Jackie the medicine that was supposed to calm her down and placed her on a bed waiting to be taken to prep for surgery. The cherry drink she was given tasted nasty she said but we hoped it would do the trick. They came sooner than we thought and took her from us when she was still quite alert. The poor child! I know that as an adult I would be scared to death to go through this, imagine what this 11 yr old girl must be feeling. We went to the waiting room to wait. Dr. Bowen called in the waiting room, they have a special phone for this that connects to the operating room, to tell us they were getting ready to take her to the OR and put her to sleep. Dr Bowen came out about 5 min. later 8:05am and talked to us for a few minutes, and let us know she was OK but very anxious. He said they would call us every hour or so and let us know how it was going, so now we just wait. Thank god Anne's brother brought his laptop computer, so you are getting all this as it happens.

9:40am

no word yet. So we still sit and wait.

10:02am

The nurse just came out and said they finished the anterior fusion (front) and they were able to do it with the scope rather than make another large incision. We take this as the first positive news. They are starting the posterior fusion now so we sit and wait for word on the next part.

10:41am

The time all of a sudden seemed to stop now the clock looks like the only thing that has moved is the seconds. The phone that is here for the doctors to call from the OR rings occasionally and every time it does our hearts seem to jump. so far nothing else to note. I will probably come up with something else to write in a few minutes, thinking an hour has passed. Maybe the clock stopped????

11:30am

They just called from the OR and said things were going well, and that they should be finished around 1:00pm. OK so we wait.

11:40am

We just met a person from the support page. Their daughter had surgery on the 9th of Jan. and was hopefully going home today. It is a real pleasure to speak to someone that can understand what you are going through and honestly sympathize with you. To hear it face to face gives you a lot of hope and faith that things will be OK. We will definitely keep in touch with this family as they cheered us up during this long wait.

12:35pm

The nurse called from the OR and said everything was OK and Dr. Bowen was finishing installing the hardware. And they should be finished some time between 1:00pm and 1:30pm.

1:30pm

Dr. Bowen called us in the waiting room to tell us that Jackie is doing fine she has come out of it enough to wiggle her toes, she should be OK in about 15 minutes.

2:00pm

Dr. Bowen called again to the waiting room and said she has only come out of it about 15 percent and that we should go have lunch while they keep bringing her out of it. Anne told him we already ate and we would wait for his call. Now is there something wrong, or what? Is she not coming out of it OK the only thing we could do is wait.

2:30pm

The recovery room nurse called and said that Jackie was doing very well, and that she was suctioning on her own (whatever that means, but I guess it's good) and she was just waiting for the OK to release her to her room.

3:45pm

They wheeled her out of recovery and into the hall where we were waiting. She opened her eyes and acknowledged that we were here and closed her eyes. God what this child has been through! The nurse said to Jackie "You did great" Jackie raised her hand and stuck her thumb up in the air. She definitely hasn't lost her sense of humor.

4:00pm

We got to her room and got her all hooked up. To see a child lay there with a chest tube, catheter, IV's ect. it really breaks your heart. They came in took her blood pressure and temperature. Her blood pressure was low so they have to keep an eye on that for a while. Her temperature is also going up.

5:30pm

Nothing really has changed Jackie is still out of it and will be for a while. One of the doctors said that her temperature going up is normal. So we sit here and stare feeling helpless not being able to do anything for her.

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