I really want to educate people and give folks some idea about CF but I also don't want to upset people or be self-centered. Does that make sense? It has proven to be a crazy time to do this sharing because things have been crazy around here. My disclaimer: It isn't usually this crazy all at one time :)
So, here is a little of the rain...
Quinn's CPT machine broke Friday night so we've been doing therapy by hand. Bummer. Quinn has been doing three nebulizer sessions a day.
Ryan has pneumonia and the flu. How do you get them both at the same time? He is down for the count.
Here is a little of the sunshine...
Sela is well--Praise the Lord!
I am well--Praise the Lord!
Quinn's new CPT machine is coming Tuesday morning.
Ryan is on medication!
And we had a really, really good visit at the CF clinic today. I'll be able to sleep better tonight.
A Cystic Fibrosis Clinic Visit in Pictures...
At the clinic we connect with the nurse (AWESOME nurse Ben), research specialist, respiratory therapist, pediatric pulmonologist, pharmacist, dietician, and social worker.
Waiting on the 7th floor of Doernbecher Children's Hospital...this is where all the specialty clinics are located.
Once we check in, Quinn gets all his vitals done (3' 9.95", 49 lb 13.2 oz). Some of the CF team check in with us to say hi and to give us paperwork to fill out. Quinn and our family are a part of long-term CF studies.
We head out to see the respiratory therapist, John. Anyone in the room has to wear a gown and gloves. Here tests are done to measure Quinn's breath--it assesses Quinn's lung function. He does a series of breaths....
...then blows out until John tells him to stop. Quinn did super well--I had been concerned if there would be a shift in his lung function. There wasn't!
Next we head to an examination room. This is the "cool room" with the fire engine examination table. Lucky us :)
Dr. Powers is part of the team of pediatric pulmonologists we've been working with since we first came to the clinic. He has a high-powered stethoscope for more in depth listening. He listens to various points of Quinn's lungs.
Listening to another section of Quinn's lungs.
Hmmmm...anything up there? People with CF can get polyps in their noses so Dr. Powers checks to see if there is anything there. Folks with CF can also have increased issues with sinuses so that is also a spot to double check.
We spent some time talking about Quinn's cough, antibiotics, lung function, and creating a game plan. I was really unsure what Dr. Powers might hear in Quinn's lungs but he said they sounded clear!!! HOORAY! The game plan is...do life! Quinn can get back into the swing of things and proceed with gusto. Terrific news!
Because Quinn has shown he can do the lung function tests effectively, we were introduced to a new therapy technique. When Quinn was born we did his Chest Percussion Therapy (CPT) by hand (we used little pink mallets). When he was old enough he was able to use a vest and machine to do CPT. It is an external method of addressing lung issues. The NEW therapy technique uses breathing exercises as an internal means to deal with lung issues. The tool used is simple and portable. It doesn't take a long time. But, it is effective!!!!! I was blown away.
We normally do a lot of planning around when we need to do therapies and doing CPT is a big one that needs to happen at least twice a day. Quinn still has to do his nebulizer too but this therapy method, called "PEP", can be done on the go in the car, at someone's house, at the mall, at school, wherever. Brilliant! And, Quinn feels like it is a game when he is doing it so he was all fired up today about using it!
Quinn holding the PEP tool
Not every visit is awesome...but I will take an awesome visit like today. Yes, please!
Thanks so much for the encouraging words and prayers. We greatly appreciate them!!!
We are partnering with the Cystic Fibrosis Foundation Great Strides Campaign to raise money to fight this disease. We know there are many needs in the world right now but if you feel compelled to "Share the Love for Quinn" to donate $1 or one million dollars you can click on Team Win With Quinn and donate to our campaign to raise $3000.