Research Involved With New Information

I don't have much to write about so while we wait to hear from the Shriners Hospital I thought I would talk a little bit about the research that I do when finding new information out so that I am an informed mother prior to going into an appointment.
When I found out that Darein would be referred to the Shriners hospital in St. Louis and was given 2 of the doctors that the orthopedic doctor would try to get us in to see there was much to do. As I talked about in my previous post, I took care of the medical questions involved with other physicians and got everyone on the same page so that all of the physicians that needed to know what was going on were informed. The following day I still felt as though I needed to do more, it makes the waiting easier and helps calm me so that I know what to expect and have an idea of what I need to know.
I first went to the Shriners hospital website and checked out the hospital that we would be visiting. I found out through the hospital that it doesn't look as though there is a place to stay such as the Ronald McDonald House for the parents like there is at some other children's hospitals which means I need to be prepared to take minimal family members up there for surgery for a lengthy stay and I need to have my husband and son try to attend their normal lives as much as possible while staying there with Darein following her surgery. I also found out that everyone was very happy with their care there which helped to put me at ease. I found out that there are only 80 beds there which could mean that it could take some time to get in for surgery. I also discovered that the first appointment is about a 3 - 4 hour appointment with a team of different physicians that would be a part of her care and surgery. Following the initial appointment, tests will be ordered if necessary before deciding on surgery and setting up surgery. The doctors tend to run behind so entertainment should be brought to keep you patient. We will also bring a nights worth of clothes so that if we are lucky enough to get to schedule tests the same day or next day then we are prepared.
I wasn't satisfied with the amount of information there and so I decided to Google, "how long does it take to get an appointment at the Shriners hospital in St. Louis, MO?". It was here that I discovered that both of the doctors that Darein was being referred to were excellent physicians, one of them being the President of the Scoliosis Society. I also found out that it can take up to 4 months to get in. I'm not sure if that is for an initial appointment or to schedule surgery. I did discover that the type of surgery that her orthopedic doctor thought that she would have to have is the most invasive as they have to make an extra incision to take a couple of her ribs to graft to her spine. This is also the most painful following surgery and takes approximately a year to fully heal. She most likely will have a full body brace following the surgery. The doctors are very good not to do surgery if not necessary. Most kids have to have curvatures of about 40 - 45 degrees before surgery is performed so looks like we might have enough time to wait the 4 months if necessary. There were also details of the surgery which by this time, I just mildly glanced at. I will go back and read this at a later date if necessary but for now I felt as though I had the information I needed. I think that it is very important to do your research whether you are meeting a new doctor or going to a new clinic or hospital or being scheduled for a procedure you are unfamiliar with. I'm the type of person that likes to know the worst case scenario so that I can know all of the risks and am well informed and can plan accordingly. Then, any other better news is music to my ears. I don't like being hit by a ton of bricks and unfortunately that is not always avoidable, kinda like when I went to the orthopedic doctor expecting everything to be great with sis and then to be told that her condition was dramatically worse.
I hope that this article is beneficial to those who deal with medical issues regularly or are embarking on new things that are scary for them medically. Research makes me feel confident and secure in what lies ahead. It can be scary but is very helpful in preparing you for what you need to know and knowing what questions to ask your physician. I now know some things that I have read and can carry on an intelligent conversation with the doctor when he tells me what his plan for my daughter is. I can ask questions, I know why he is doing certain things and I have a timeline and so if something comes up that isn't what I expect then I know what to ask so that I can better understand what is going on.