Yesterday F had a follow-up visit with the pediatric pulmonologist. We were there to discuss the use of the prednisone. Prior to the appointment I had asked F if he felt that weaning off the prednisone had a negative impact on his breathing? He communicated yes to me. The outcome of our discussion was that it would be in his best interest to begin taking the every other day dose again.
The doctor came in and said that he had reviewed all of F's records and happenings over the last seventeen months (that's how long it had been since F had been to clinic). We explained F's decision to wean down on the prednisone after being told by a handful of doctor's that the secondary skin infections had to do with immune suppression to which the this doctor replied "Do you have urinary tract infections? Do you have other infections sinus, ear, respiratory? Is your blood sugar out of control?" All questions were answered with a no. Although F has had his fair share of infections this year, he did not have an excessive amount of infections (the cysts by his ears... another story completely), other respiratory infections were secondary to viral illnesses, and his lab work looks great.
In a quick nutshell, the doctor spoke directly to F, Caroline, and I. He informed us that this dose of steroid is low. That other doctor's have somewhat of a narrow viewpoint that is isolated to there area and level of expertise. That they are overlooking what is most important and that is the comfort of the patient. That if F breaths easier his body is less stressed. He will have fewer seizures. He will be more comfortable which is ultimately most important. He should be breathing comfortably enough to ENJOY his life and his life's daily activities. Which F admits he's been less comfortable and it has impacted his activities.
I love that the doctor and F interacted together. The doctor understood by facial expression and F's head turns all of his yes and no responses (we do not use high tech communication at appointments it's too fatiguing and stressful). F was pleased with the doctor's plan for him. F was not happy when learned he can no longer be a patient in the clinic because of his age, but was relieved and pleased when he told F he is only a phone call away and that his primary care doctor or any other doctor is always welcome to call and consult with him about his respiratory needs. We have to be diligent and find a primary care doctor who is willing to put the focus on keeping F comfortable to enjoy his daily life and not on solving whatever problem is right in front of us for that moment be it a skin infection, ear infection, or cold.
F needs to be cleared for surgery to have his preauricular cysts removed. Due to the increased inflammation he developed from the use of the lower dose of prednisone from the weaning process F needs a five day prednisone burst to get it under control and then he'll return to his regular 10 mg every other day for his maintenance dose.
Overall this was a valuable learning experience for me, but mostly for F. I think it built F's confidence in himself and his abiltiy to communicate. That he can make his comfort a priority when it comes to his daily needs and care. That it is VERY important for him to be able to live the best life he can.
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