Last week we took Jeb to meet his new medical team, led by Dr. Susanna McColley, the CF director for Children's Memorial Hospital. Thankfully, they have satellite offices close to us, so we don't have to make the haul downtown.
When we entered the office, the receptionist explained that Jeb needed to wear a mask when in the waiting room to prevent spread of germs. I wasn't so sure he would do it, but since Aiden was there and was keen to try one on, Jeb did too. I have to admit, it was cute. Then, on to the exam room where the nurse took his sats, which he readily stuck his finger out for (99%). The new thing was blood pressure - his arm got a little hug, which he didn't flinch for. Then the nurse pracitioner came in. Stacy sat with us and explained how each CF clinic is run, gave us a ton of paper and brochures to read through and answered most of the questions that we had. Then Dr. McColley came in. I was really nervous because I knew that American CF centers are much more worried about the spread of germs among patients and because of this, they wear gowns, masks, gloves, hats, etc. (This is what we experience when Jeb was diagnosed in Grand Rapids). But, thankfully, dr. was in a leopard print dress covered with a disposable gown, gloves, and a nice pair of high heels. Jeb wasn't scared in the least!
The exam. Jeb's weight has stayed just below 50th percent, his height 25th, which equals out to a BMI of 59%. Nothing to worry about. We discuss his pancreas and dr. said she expected he would always be sufficient due to his mutations. I've been told this before, but it's great to hear it again. His blood would need to be drawn again to get accurate vitamin levels (he did great!). She listened to his very clear chest, did a cough swab and gave us a bill of good health. The only concern she had were his ribs, which are concave where they meet and the left side protrudes. This is probably a result of hospitalization way back when. She recommended physical therapy to correct it, so we'll put that on the list of things to do.
The changes. Pulmyzon is a preventative drug that I've known about and was aware that Jeb would begin when he was 5. They are recommending that he uses it now. No studies have been done for the under 5s since they can't perform lung function tests, so no one knows if they help. Dr. McColley believes they could only help. So, it's something to think about. It's a daily nebulizing treatment and we are always cautious of over medicating since Jeb will have his fill of medicine throughout his lifetime. He also has an inhaler before PT (aka pats) to open up the small airways. He thinks it's cool. And lastly, the vest. We had a good laugh with the doctor when she asked us if we were aware their was a vest available to do in place of pats. We were and had discussed it with Dr. Hull at Oxford, who laughed it off as very American. Which, let's admit it, it is. But, we'll do it since it will be super easy for Jeb in the long run.
So, there you go. The plan fell into place so easily. A doctor who knows Jeb's head doctor at Oxford, as well as the doctor that helped with his diagnosis in GR (Dr. M spoke at the CF conference there). I feel we are in very good hands, but I'm sure there will be growing pains. Just hope it's painful for Tom and I, not Jeb.
And as a side note, the apointment lasted 3 hours, we didn't get to see the dietician and social worker, but the older boys were so great the whole time! And below is Jeb's lastest acheivement...skiing!
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