I am and have been living in denial about Tyler's upcoming surgery. Joey has been too, and I think Tyler is as well. The word has always held negative connotations to me, but in this case it is what we need to do to not freak out every day. It is an odd feeling. I know and can talk about Tyler's surgery and explain the details of his medical history, but I feel detached from what is really happening. Daily tasks take over and keep us busy and since Tyler is so healthy and active it is easy to ignore the curve in his spine. We can see it and feel it, but just choose not to dwell on it. But I can feel it changing now. It is harder to concentrate on tasks, particularly this evening.
We have tried to be as open and honest about the surgery as we can with Tyler without scaring him too much. Although he doesn't like what he hears, he has taken the information in pretty well. He has been talking calmly and openly about his surgery and even has been asking who will visit. Tonight we told him again about what will happen when we get to the hospital and tried to explain some of the things we have heard about that might be scary if he doesn't have warning. (Thank you for the tips from those who have surgery experience!) He just broke down and cried. He begged us to not take him to Seattle. He is scared and confused and just plain doesn't want to have the surgery. He is a brave kid and tried to pull himself together which just broke our hearts even more. It is so hard to not just break down and cry with him because we are scared too, and we don't want to put him through this either. I did hear about Child Life Specialists at Children's who are supposed to be great at helping kids understand what is going on and cope with all stages of being at the hospital. I will call to arrange for one to be with Tyler and hopefully that will make things easier for him.
The reality of the situation is sneaking in on me now as I make the final preparations like packing the bags and making arrangements for Kaitlyn (our 3 year old daughter) and coordinating family coming over to visit. It is going to be harder to ignore and live in denial much longer.
Tyler was diagnosed with congenital scoliosis when I was still pregnant with him. Although he was and is otherwise healthy and active, he has a significant curve (about 80 degrees) in his spine. We are greatful that we were able to simply monitor his growth and the progression of his curve for the last 5 years. Now, it is time for his first surgery. My name is Sarah and my husband Joey and I want to share Tyler's story with anyone who it can help.
Hi Sarah, I found your blog through the VEPTR Facebook page. Our Lilly is also 5, and had her veptr implanted last Feb at age 4. The feelings you describe--both yours and Tyler's--are so recent in my memory. Lilly was usually satisfied with the explanation that "your back is shaped like an S, and it should be shaped like an I. The doctor knows how to change it from as S to an I.". On the way to the hospital for the implants, however, she said "why was I born with an S? I wish I had an I.". These kiddos are tough! Feel free to check out my blog posts from last Feb if you want to read some firsthand accounts of what to expect. Best wishes and prayers for you all!
ReplyDeleteIzabell has not had back surgery but has had many surgeries at childrens. She likes bringing some things from home with her, pillowpet loveie, books and movies are her favorite things. Visitors help make the day easier also and let us get a bite to eat. it is hard to leave to get food or anything with out visitors helping.
ReplyDeletealso child life may be able to give im a book about his surgery but it ma y be to late for them to mail it. Have you guys had an over night in the hospital before? Wen you pack try to remember to bring some things for yourself too. It is hard to think of yourself but you will be grateful for some of the simple things. It is very dry and the tissues they supply are scratchy so pack some of your own soft ones. chapstick lotion, a book a notebook and pen for questions wile the drs are out so you can ask at rounds,comfy clothes and shoes.