Health Care Home - Patient Story - Jordon

Jordan's Story
This story was submitted by Jordon's mother, Lynette.

When we first met with the Neonatologist at Minneapolis Children’s we were told that, he had less than a 10% chance of surviving. Jordon fought every step of the way. He spent the first 11 months of his life in the hospital. He had numerous surgeries and when he came home from the hospital on January 7, 1992, his future was uncertain. Our mission was to give him a life that included all the things he wanted to do and to treat him like anyone else in the family.

Within the first year of being home Jordon weaned off the ventilator, then got his trach, and feeding tube removed. Life was busy with appointments and keeping him healthy. We were going through a particularly rough time in late 2004, we had just found out that on top of everything else Jordon had an IgG deficiency and that he would need to have IV treatments every three weeks, indefinitely and I would have to close my home day care. I began to question if I was cut out for this, my husband and I strongly believed that there was a reason Jordon was given to us but at times like these, we questioned the validity of that. I felt there was something important I was supposed to do with everything I had learned from being Jordon’s mom but up to that point I had not been able to figure it out what it was.

It all became clear a few weeks later when I got a call from Dr. Peitso. She asked me if I would attend a conference about a new initiative that was taking place in Minnesota. We did not have much information but I decided to go. That was the beginning of my involvement in Medical Home as a parent partner.

At this first conference, we heard about care plans. I knew that I would make it my mission to make sure that we got one and that they would be available for other families. The care plan changed our lives; it makes life so much easier. We have one with us wherever we go. We give one to everyone who works with Jordon. We take it to all of our appointments. Yet the most important thing we got from having a care plan that we did not anticipate was a sense of freedom. For the first time we were able to leave the house and know that Jordon’s caretakers had all the information necessary to care for him.

We have since taken out-of-state trips that would have been much more stressful if we had not had the care plan. By having a care plan, all of Jordon providers are on the same page and know what each is doing because it is all together in a care plan. One of the best parts of a care plan is that is personalized. It reminds providers that Jordon does not like band-aids and likes to be talked through procedures. I think that it reminds people involved with Jordon that he is a kid -- not a diagnosis; he has likes and dislikes. I do not have to remember everything and that alone is a relief as a parent. Another bonus was that we did not have to repeat Jordon’s story. Continually having to tell his story in front of Jordon made him uncomfortable and made him think that there was something wrong with him. We have taught our children that there is nothing wrong with anybody there may be things different but everyone is different. Since the medical home, I have seen the number of times we go through something like this reduced considerably and I cannot put into words how much that has meant to all of us.