Brian and I recently met with Ian's Gilchrist MD and social worker in order to update Ian's care. When we first started with Gilchrist our focus for Ian was quality of life. Brian and I have always said we would do what we needed to do in order for our children to be happy. We have always advocated for our children, as children they can't advocate for themselves, especially those with medical complex situations. We have changed his main focus to be comfort and quality of life.
Ian has been more tired lately, napping at least 2-3 days a week. He prefers to be home, going out has become more challenging for him. We are starting to learn how to really listen to him and to read thru the lines with what he is saying...he is sad when he is at school and happier at home. Based on that along with the decreased energy and increased fatigue, Ian will be starting Home and Hospital over the next few weeks. I have been in contact with school and an IEP meeting has been schedule to get this change in place along with his team being able to update his IEP goals. Currently they are education based and we want to them to be more fun with some educational component to it. After all, why shouldn't he be able to have as much fun as he wants.
The Gilchrist child life specialists has been working with Ian to find out what some of his wishes are regarding his wants, needs and his care. He was able to share with us that he does still want to go to the hospital when he gets sick as long as they are going to be able to make him feel better. Thru the wonderful work the child life specialist does she was able to get Ian to express that he does not want to die at home. He wants to be either in the hospital or some place else.
Over the past year, Ian's scoliosis has increased to over 70 degrees. We have had many conversations with many different people, professionals and non-professionals, regarding surgery. We have seen 2 different specialists who each recommend different procedures, one would do a growth rod procedure which would require addition surgeries easy year, the other would do a spinal fusion. We have decided, if we do surgery, we will go to DuPont to have the spinal fusion done. We know there are risks with doing the surgery as well as if we don't do it. Ian's back pain has increased...which we hope would be reduced with surgery. We have been in contact with DuPont and they are already scheduling into January...we know we don't want to effectively put him in the hospital at that time of year so we are looking at sometime early spring to schedule (in case we decide to do it). This gives us time to explore non-invasive options, such as getting an in-home PT evaluation done to help with positioning in bed and in his chair, as well as pain control.
So there have been changes oh changes....treasure, dream, live.