‘WE’ have CF

Posted: October 19, 2011 in Cystic Fibrosis, mom
Tags: , , , , ,

Again, we reside within the walls of Childrens’ Hospital. I was correct about it being time for a “tune-up”. And, while it is difficult to adjust our world for it, I am grateful that this visit should carry us through the holidays and hopefully through the end of the school year.

We are beginning a new trend, “tune-ups” twice a year; May and October. I can accept that (even though we used to only require one a year). I understand it is likely that we will continually progress over the years, but he still responds quickly and has it easier than most (despite his genotype, Delta F508).

All this being said, I am currently faced with a conflict in personality with our primary pulmonologist. Okay, ‘conflict’ may be a bit strong of word.

At my son’s diagnosis at 5 weeks old we were assigned the senior pulmonologist, the great Dr. Lyrene. For the following five years he was our fearless and dedicated leader. He was compassionate to our family life but proactive with my son’s care. He understood that I had more than a CF child under my care. At each clinic visit he encouraged me and took time to answer all of my questions, never leaving me feeling rushed or overlooked. I felt safe in expressing my emotions and trusting in his decisions regarding my son’s health. I suppose I felt like he actively treated ALL of us and ALL of the aspects of CF, not just the medical aspects. I often catch myself saying ‘we’ have CF. It may be that in a handful of years that will sound offensive to my son as it is HE that has to endure the shots, the treatments and the medicines, I understand that. But this disease affects us all…the entire family. We stop what we are doing and refocus all of our energy on him. Daily, we are ALL affected by the routines and meeting his needs. I’m not playing the sympathy card, this is just our fact of life. Many looking from the outside would be shocked by all that must be done and monitored, but we all collectively accept it as normal in our routine. My point is just that CF is more than a hardship on only the patient.

Anyhow, Dr. Lyrene, who understood all of these emotional and physical taxes upon us, retired when Colby was 5. It was sad news for us to hear and the idea of having another doctor that was unfamiliar with our family and/or not as understanding of the impact upon us all was, to say the least, scary.

I’m the type of mom that is very active in [all] of my childrens’ care. I stay calm through the scary gashes of the head, I am reassuring but firm when one of them requires a shot, or medicine and I find comfort in knowing the real truth of a situation, don’t sugar coat it for me. From the beginning, I have had a lot of medical equipment to adjust to and procedures to be familiar with, so there is little that I don’t already do (like shots , changing g-tubes and other medical procedures). I’m the type of mom that wants all the information, good and bad. You have to be honest with me about it all and take the time to help me understand. Don’t dumb it down. Don’t make it appear as if it isn’t a big deal, when it just may be. The unknown to me is far more concerning to me than any truth.

I will trust my doctor’s expertise if in turn, he can respect mine. I will do all that I can to facilitate the best care for my child, but I refuse to allow CF (or anything for that matter) to control our quality of life. We will not sit and mope, feel sorry for ourselves or lock ourselves up. We will live, laugh and love with the acceptance that no day is promised to us.

So, where is this dilemma, you ask? In Dr. Lyrene’s retirement we were assigned the newest addition to our CF team. While the team operates collectively and are aware of each patient’s care, this new doctor (Dr. Hoover) would be our primary. He would be the one seeing us in clinic, answering our questions and making the final decisions in the care of our Colby. I must be honest and say that my guard immediately went up. I knew that wasn’t fair so I did my best in the first several visits to be honest with him and request the same in return. We both had to trust each other, that Colby’s care was at the root of all decisions.

Since then, four years now, we have made progress but I have yet to feel that comfort and ease that I had with Dr. Lyrene. I still feel like I need to rephrase a question a couple of times to get a complete explanation and his compassion for the rest of my family is lacking. Dr. Lyrene was always good at giving me warnings for when we needed a “tune-up”, giving me time to adjust our schedule and call in reinforcements to keep our home running smoothly. Dr. Hoover doesn’t seem to make decisions in this fashion. His remarks, suggestions and course of treatments are dry and lack empathy, to me. Don’t get me wrong, my son hasn’t an issue with him. They laugh and joke with each other, their relationship is light-hearted. But, at Colby’s age, there is little that he requires as far as emotional support or questions from the doctor. If Colby has questions or fears, he comes to me.

Over the years, of course, the rest of the team has been on call during our many “tune-ups” and most recently have been the ones overseeing them. Generally, we do not see Dr. Hoover during our tune-ups. So, I don’t know if this is just part of his role within the team or what, but it has at least given us the opportunity to connect with the rest of the team. In this time, I have learned that not all members of our CF team have his same bedside manner or abrasiveness. They (one in particular) seem to understand that I have more than one child that need me and depend on me. They see that I am often torn at the seams trying to be everywhere at once. He not only sees that but shows compassion, understanding and adjusts our plan to the needs of the entire family. He is encouraging and uplifting in his remarks and doesn’t seem bothered when I have questions or concerns. I don’t feel like I am chasing him down to get a straight answer.

So, I think I am at a breaking point a bit. I have requested a visit with our social worker to discuss how I am feeling about it all. I am hoping that maybe this will be passed effectively to Dr. Hoover. I don’t want to be perceived as the neurotic mom, though, and I fear that that will be the only outcome. What I really want is a more open relationship with Dr. Hoover but if it comes to pass that this is just his personality, then I am considering requesting a change. I don’t know how that is handled or if it is ever even done. But, I want to feel that we are treated as a unit, a family, because that is how we operate. We all have a job, a place and importance. I don’t want to feel like I am foregoing one of my children for the other. I never want them to question that they were all loved equally and unconditionally. I want them to all look back and have memories of me being there for each of them, not just shooking them to care for Colby.

So, any opinions? Any suggestion? Any and all would be appreciated….

Can you relate to any part of this (CF or not)?

Am I being an over-bearing mother of a patient? Am I being too harsh or expecting too much??


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