Another realization about the importance of the doctor-parent relationship came with Billy Ray’s medical procedure yesterday. I have written about Brice Stanley, PA-C and Dr. Michael Masterangelo, the surgeon who saved Billy Ray’s life last summer. See an earlier discussion about the benefit of parent-doctor relationships here .
The medical procedure yesterday involved putting a scope down Billy Ray’s throat to ascertain why he is choking more and more seriously lately. I was not particularly worried about that. He has been sedated for many procedures with no problems. However, I am terrified that he will ever have to have general sedation with use of the ventilator because of the incident last summer where he was not able to resume normal breathing and was on the ventilator for nine days following surgery.
On Tuesday, the hospital called to say there had been a change of plans and Billy Ray was going to have general sedation which can mean the ventilator. I panicked for a bit and called Dr. Masterangelo’s office. Almost immediately, I felt stupid because I realized how confident I am in “Dr. Mike” (as Billy Ray calls him).
There are risks involved in medical care of all kinds. It seems heightened for complex special needs children. Risks are frightening but not totally avoidable. Additionally, mistakes do occur in medicine as in any other profession. The news is full of information on mistakes made by medical providers. All of that increases our fear as parents.
In that momentary panic two things became instantly clear: 1) The risk of Billy Ray continuing to choke was great and reduces the quality of his life by taking the joy away from eating. 2) Dr. Masterangelo knows Billy Ray very well, is a highly competent surgeon and I trust him to do everything he can to mitigate risks.
The Anesthesiologist Dr. Masterangelo had chosen was wonderful and seemed to have more of an understanding of Down syndrome than we have experienced at times. He did not use the ventilator and the procedure went very well. It was a comforting experience for Billy Ray and for me to just trust the team. Had I continued to panic instead of relaxing in the confidence that Dr. Masterangelo would do everything to keep Billy Ray as safe as possible, Billy Ray would have picked up on my panic and it could have been a horrible time for all. Instead he relaxed too and did great.
When we have done all that we can to have a relationship with the medical professionals for our child and feel confident in his or her understanding and care for the child, we have to relax in that confidence. An incredible comfort comes with that acceptance and trust. I am so thankful to have that peace with the medical providers in Billy Ray’s life.
Until next time,
Peggy Lou Morgan