Not a lot to share yet but since I am taking you with me on this journey to find the cause of Billy Ray's pain and seeming deteriorating health, I wanted to share that I am feeling more hopeful today.
Not only am I frustrated but the other members of the medical team are probably frustrated because we have tried so many things and nothing demonstrates why the issues continue. The team called in Dr. Rick Bochner from Bend Memorial Clinic.
Dr. Bochner saw Billy Ray in the hospital and again at his clinic yesterday. We went over the results of lab tests run while BR was in the hospital. I am relieved to find he does not have a sensitivity to glutten because that is something I feared. Billy Ray is a big bread fan and there is so much talk about glutten free diets I have asked to have him tested for it several times over years but it hasn't been done. This time Dr. Bochner honored my request and eased my mind considerably.
The thing I felt best about in the visit with Dr. Bochner, though the glutten thing was a big relief, was that Dr. Bochner said "I want to stay with it and find out what is making Billy hurt and fix it." That commitment is encouraging. That is especially true since the other two members of the team are equally committed and have gone far beyond what many providers might do.
Next on the agenda the wonderful colonoscopy on the 27th. I am so relieved that Dr. Bochner had his assistant work to schedule the colonoscopy when both he and Dr. Raudy will be available.
As shared before it is frightening when we have to call in an anesthesiologist because of his history on not being able to come off the ventilator. We met and immediately respected Dr. Todd Raudy when he sedated Billy Ray for a scope of the upper abdomen in April. I have met with many anaesthesiologist over the years not only for Billy Ray but for prior disabled clients. It is clear they understand their field well but none have communicated so much understanding of the specialized needs of disabled children and adults as Dr. Raudy did.
It is still onward and forward. Billy Ray is up and down but able to participate in his Meals on Wheels yesterday before his visit with Dr. Bockner and is now on his Thursday activities.
Until next time,
Peggy Lou Morgan
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Blogs: Amazon Blog and Lighthouse Parents Blog