Natalies Brace

(for the impatient or those who know the story, pics are here )

part 1: the plan

We were told earlier in the year that this summer would be a good time for Natalie's surgery. Although she was still doing some growing, her curves were continuing to progress in the brace, and it was time.

Like many parents (who have the option) do, we scheduled her surgery for the beginning of the summer, so she could spend the summer recovering and not miss school. The one thing she would be able to do first was go to a 2 week summer enrichment camp at the University of Virginia. Then home, and off to surgery the first week of July.

part 2: the Uh-Oh

As summer approached, so did H1N1 . While slightly concerned, we couldn't keep Natalie in a plastic bubble, so off she went to her summer enrichment camp at UVA. Then it came. The dreaded email:

Dear SEP Families,
We have had 5 positive cases of Influenza A among our 312 campers. Those exhibiting any flu-like symptoms have been taken to the First Med clinic and those parents have been called.
If you have not received a call then please know that your child is doing just fine. Camp is still open and activities continue as scheduled for the last day.

Well, no one in Natalie's suite was one of the infected campers, and although Natalie said she had a little sore throat, we figured we were OK. We picked her up on schedule, and took her to the doctor that weekend to get tested for the flu, just in case. She tested negative.

The following week we went to Children's Hospital for her pre-op, and were told that because she had been exposed to confirmed cases, they would not do the surgery, even though she tested negative, because she was still within the incubation period. The earliest they could re-schedule her for was October 20, more than 15 weeks later... right in the middle of school and flu season.

part 3: the dilemma

Because Natalie needed to be flexible for the surgery, she had been out of her brace since before she went to summer camp. And we could see that the great job her orthotist had done keeping her from progressing in the brace was slowly being undone by gravity and time out of the brace.

We contacted her surgeon to let him know we were concerned about her progression out of the brace, and the excessive length of time until her surgery. We asked to be put on the waiting list, so we could go in earlier if there was a cancelation. We were informed that "no one ever cancels ... every case is urgent" and "don't worry, her curves shouldn't progress too much in the meantime."

That answer didn't sit with us very well. Especially my wife. We were watching her spine compress down upon itself as the days and weeks past from her original surgery date. Surely some people do cancel, hadn't we ourselves had our first surgery date cancelled ? Some cases must need to be handled in a more timely fashion than others, there must be openings for emergencies, people more able to wait a few weeks ..... Apparently not.

part 4: the new plan

As it became clear to us that something needed to be done sooner rather than later, and that it wasn't going to be done by her current surgeon or Children's Hospital, her mom begin looking into our other options. We wish we had the foresight to do it earlier. Note to readers: always try to have a backup plan.

Thankfully, she was able to be seen almost immediately by another doctor. Not because he wasn't busy, but because he took the time to respond to our emails while on vacation and made the time to see her. A far cry from our prior experience, to say the least. And trust me, I am trying really hard not too say too much.

He and his staff were able to were also able to schedule us for surgery at prior to the second date we were able to get from Children's Hospital. And we were not told "no one ever cancels," but that cancellations do happen, and if it was possible they would get us in earlier.

part 5: the call and the surgery

Last week on Wednesday (9/9/09) Natalie had her surgery. In her pre-op bending X-rays, we found that her curves had progressed from about 50 degrees to 70 and 75 degrees. Despite that, her surgeon was able to get great correction, although it took having her spine fused from T3 - L4, and 2 rods and 22 screws to do it.

part 6: the next steps

Natalie came home Sunday after surgery and is working on her recovery. She and her family would like to say thank you to all the friends and family for the cards, flowers, food, prayers and well wishes and help they have provided through this process.