CF Clinic update

Today I brought Gavin to the Twin Cities for his regular CF clinic appointment…

by myself.

I had never brought him alone before, and was a bit apprehensive about the whole ordeal but it turned out great. We woke up early enough to eat breakfast, shower, do treatments, & have a snack before heading out the door.  I also allowed enough time to eat some food at the hospital cafe before going upstairs for his appointment.

Totally had my camera with me, but was a bit overwhelmed and forgot to take pictures, sorry!

Once upstairs we checked in and I got the usual stack of papers to fill out. Some of the questions make me laugh because they do not apply to Gavin at all.

• Do you smoke?
• Do you consume alcohol?
• Do you use recreational drugs?
• How often do you exercise?
• Are you sexually active?

Is it just me…or shouldn’t they have separate forms for the little ones? Ha!

We got called back within 2 minutes of checking in. ALL TIME RECORD. This just had to a great sign!

First Gavin gets his height/head size measured and then drumroll….weighed. He gained just under three pounds (he’s at 24 pounds) since his last PFT 2 1/2 months ago. Pretty darn great!

This resulted in his highest weight:height BMI ratio EVER at 55%. I was floored. I was certain that he hadn’t gained much weight if any….WHEW!

I lost track of how many times his team said, “he looks great/fantastic/perfect!” And one by one, they all came in to take a peek at our little cutie. We hadn’t had a regular appointment visit in six months (typically we see them every three) because they “counted” his last PFT as a clinic visit. He definitely got several comments on his baby blues, blonde hair and overall adorableness.

The results of his previous bronchoscopies came back. Gavin participated in a research study conducted by our pulmonologist who is tracking the changes in the lungs of CFers during their first year of life. NINETY-NINE PERCENT of the cells in his lungs are NORMAL.

Simply amazing.

Before we left, Gavin got to have one of those fabulous throat cultures. His last one was done while he was asleep for his PFTs…this would officially be his first culture done as a toddler while he was wide awake. The first time he would have some clue that something “weird” was going on.

He was not a fan.

But they are necessary (they test the cultures for “bugs” that stick around in CFers lungs) and a part of his normal. After a snuggle from mom and a gift of teddy grahams from the nurse he was back to his smiley self.

We left the University of Minnesota today with smiles on our faces. We are so, so very blessed to have such an amazing team treating our son. Their aggressive treatments have allowed our son to live a “normal” life. I truly believe that the early introduction of CPTs (whether done manually or with the Vest) and inhaled medications via a nebulizer are what have kept him “healthy” thus far. One of his inhaled meds opens up his airways while the other cuts (like scissors) through the sticky mucus…both keeping those yucky bugs from sticking around in his precious lungs.

Next week Gavin has his fifteen month wellness visit, and in three weeks he has another round of PFTs. He may have to visit the doctor more often than a “healthy” kiddo but it’s all done to keep him healthy and to catch those nasty bugs before they become an issue. This is all part of his normal…and now it’s our normal too. And when you love your team of doctors as much as we do, it isn’t a burden at all.