Monday, April 14

Quarterly CF Clinic

We made the drive Friday morning to CF Clinic for Madeline's quarterly visit. Our last visit was at the end of January. Since we are cycling through TOBI every other month, this seemed like a good time to head for a checkup- April is our " off" TOBI month. It's usually a 2 hour trek to Hopkins so Madeline asked to watch "Frozen" in the car.  This may have been the 456,763,177 time she has seen it but, it did help the car ride seem quick for her.

Watching "Frozen" on the way to clinic 

First, we usually check in upon arrival and wait for the nurse to get Madeline's stats. Usually the nurse gets  her O2, height, weight, blood pressure, and respiratory rate. We are usually ushered back back out to the waiting room to sit until Madeline's name is called into the CF Clinic.
We bring an assortment of iPads, games, movies, etc to keep Madeline busy since these appointments usually take close to 2 hours from start to finish.

After stats... It's ipad time 

And more waiting for the pharmacists, nurse, respiratory tech, and doctor to 
go over Madeline's care at clinic. There are always so many people to consult with while we sit in one room at CF Clinic

Waiting for cf team 

After going over the many meds that Madeline takes with the pharmacist, adjusting 
dosages, and discussing any changes this is what our updated medication list looks like on a daily 
basis. Madeleine always takes her meds like a champ. No complaining and a lot of pill swallowing 
take places. She swallows over 17 capsules a day....

Madeline's med list

After meeting with the pharmacist, we met with the PFT tech.
She worked with Madeline this time "practicing" her blowing technique for her future 
pulmonary function test. Usually clinics start using the data from these tesst around the age of 6. 
So until she turns 6 Madeline will come to the lab each visit to practice. PFTs usually give doctors a 
good idea of how well her lungs are functioning and sometimes help discover what exactly may be affecting the lungs by the readings on her pft test. It's another diagnostic tool that cf clinics use to 
kept Madeline's lung health monitored. Usually when lung function drops there may be cf bugs, 
infections, etc happening. Madeline enjoyed checking out the pft lab and practicing. The doctor and pft tech noted that she did well for her very first time. They saw expected PFT values for a child her age just starting.

We came back to the room and waited for the doctor to do an exam.
And more waiting...

The doctor came in and listened to her lungs, looked in her ears, felt her stomach, discussed how she has been feeling, and finally took a throat culture. We visited with the nurse too. Both the doctor and the nurse were pleased with Madeline's progress.

Madeline gained 2 pounds between last visit in January and now. This put her at the 90th percentile for weight. She grew an inch since January and measures 45.5 inches now which puts her at 92nd 
percentile for height. Her BMI is now 85%. The doctor was very happy with these stats. They encourage cf patients to gain 1-2 pounds between clinic visits and maintain a BMI above 50% since lung function is directly tied to a higher BMI.

Overall, there were no changes to her cf medical plan. It's always a good sign that the doctor is very happy with how Madeline's health is progressing. No change = positive visit.

Now, we just wait for the culture results to come in next week. 
We are hopeful that no new bugs  will show up besides her typical " light pseudo".
We have our fingers crossed that  the results will be what we expect.
Please keep your fingers crossed for us.
Thanks again for everyone that thought of us as we traveled to clinic. All the Facebook comments of support are always appreciated. 

Cheers to a good clinic day. We celebrate each good one!

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