What Happens At CF Clinic Appointments
Caroline has a monthly appointment at Dayton Children's Hospital for her Cystic Fibrosis. These appointments are called "Clinic Days." They are a check up with a specific team of doctors focused on helping us manage her Cystic Fibrosis.
Right now Caroline is five months old and we have a check up every month. Eventually Caroline will transition to going into clinic check ups every three months. Once that transition happens, she will have clinic check ups every three months for the rest of her life.
Cystic Fibrosis affects Caroline's lungs, liver, pancreas, and digestive system so there is a lot to cover at these monthly appointments!
VITALS: We begin each appointment checking her heart rate, blood pressure, and oxygen saturation. These are all indicators of how her lung function is, if she could be struggling to breath or have an infection in her lungs.
WEIGHT AND HEIGHT: We take a weight and height check on Caroline to make sure she is growing. One of the symptoms of CF is malabsorption because CF causes the body to not be able to absorb calories and nutrients from food. For example, if she drank a bottle of milk with 100 calories in it she may only absorb 50 of the calories and the rest would be lost in stool.
This happens because Caroline's pancreas is not able to send enzymes to help her absorb food. She takes enzymes orally with every meal to make up for this and will for the rest of her life (or until a cure is found :) ). We do weight checks at each appointment to ensure her enzyme dose is effective and she's absorbing the nutrients and calories her body needs to grow.
PERCENTILE GROWTH: A higher, healthy BMI is associated with better lung function, that's why checking Caroline's percentile/BMI at each appointment is so important! It's common for CF babies to linger in the 1st-40th percentile for height to weight because of issues with malabsorption. At five months old, Caroline is currently at 50th percentile which we are SO grateful for. Also, the body uses a lot of energy to fight the effects of CF which also contributes to weight issues in people living with CF.
CULTURE: A nurse swabs Caroline's throat at every appointment. They are looking for many, many types of bacteria that could be growing deep in her lungs. Common household germs and bacteria are a big concern for Caroline because if she comes into contact with them she could harbor that bacteria in her lungs for months, years or a lifetime.
For example, pseudomonas is a very very common bacteria in households. You can find it anywhere there is standing water (dog bowls, bottom of a toothbrush cup holder, bathtubs, keurig water trap, drains, bottle warmers, etc.). If I come into contact with this bacteria my body would let it pass right through me unnoticed. If Caroline come into contact with it, it would settle into her lungs and could make a home there for decades, leading to a more rapid decline in lung function. We take cleaning and germ control very seriously at our house!
NUTRITIONIST: Our nutritionist reviews Caroline's weight gain, current percentile, eating habits and intake. She helps us determine if Caroline's enzyme does needs adjusted as well. I make calls to Caroline's nutritionist when I notice signs of malabsorption or have questions about anything pertaining to eating. For example, we just spoke on the phone yesterday about when and how to start Caroline on solids, the use of probiotics and her most recent positive signs of absorption.
SOCIAL WORKER: At clinic we also speak to a social worker who helps direct us to financial assistance programs and makes sure we are able to get everything we need to care for Caroline. Caroline's medical bills easily cost $5,000 a month. Her help has been crucial for us to find assistance with these bills. The social worker is also an emotional support to us as and often asks how we are doing with her diagnosis and care.
RESPIRATORY THERAPIST: The physical therapist teaches us how to give Caroline chest physical therapy and airway clearance pats. We have a special tool we use to pat all areas of her lungs and break up mucus building up inside of her. We do this therapy twice a day, every day, for 40 minutes each.
PULMONOLOGIST: The last person we see on clinic days is Caroline's pulmonologist. He is the director of our hospital's CF center. He reviews all of her vitals, stats, labs and progress. He gives a physical exam to Caroline to check for bowel obstruction, constipation, wheezing, mucus in the lungs, sinus problems, and developmental issues. He answers any questions we have about the disease, the future, her progress, germ control...anything!
Our clinic appointments take anywhere from 2-3 hours. It's a looong day! We have become so close with our care team and can see them becoming like family members to us over the next several years.
If you want to see a few video clips of one of our recent CF Clinic Appointments you can find them on my Instagram stories linked below.
Our CF Journey Instagram
Our Clinic Day Instagram Story
Right now Caroline is five months old and we have a check up every month. Eventually Caroline will transition to going into clinic check ups every three months. Once that transition happens, she will have clinic check ups every three months for the rest of her life.
Cystic Fibrosis affects Caroline's lungs, liver, pancreas, and digestive system so there is a lot to cover at these monthly appointments!
VITALS: We begin each appointment checking her heart rate, blood pressure, and oxygen saturation. These are all indicators of how her lung function is, if she could be struggling to breath or have an infection in her lungs.
WEIGHT AND HEIGHT: We take a weight and height check on Caroline to make sure she is growing. One of the symptoms of CF is malabsorption because CF causes the body to not be able to absorb calories and nutrients from food. For example, if she drank a bottle of milk with 100 calories in it she may only absorb 50 of the calories and the rest would be lost in stool.
This happens because Caroline's pancreas is not able to send enzymes to help her absorb food. She takes enzymes orally with every meal to make up for this and will for the rest of her life (or until a cure is found :) ). We do weight checks at each appointment to ensure her enzyme dose is effective and she's absorbing the nutrients and calories her body needs to grow.
PERCENTILE GROWTH: A higher, healthy BMI is associated with better lung function, that's why checking Caroline's percentile/BMI at each appointment is so important! It's common for CF babies to linger in the 1st-40th percentile for height to weight because of issues with malabsorption. At five months old, Caroline is currently at 50th percentile which we are SO grateful for. Also, the body uses a lot of energy to fight the effects of CF which also contributes to weight issues in people living with CF.
CULTURE: A nurse swabs Caroline's throat at every appointment. They are looking for many, many types of bacteria that could be growing deep in her lungs. Common household germs and bacteria are a big concern for Caroline because if she comes into contact with them she could harbor that bacteria in her lungs for months, years or a lifetime.
For example, pseudomonas is a very very common bacteria in households. You can find it anywhere there is standing water (dog bowls, bottom of a toothbrush cup holder, bathtubs, keurig water trap, drains, bottle warmers, etc.). If I come into contact with this bacteria my body would let it pass right through me unnoticed. If Caroline come into contact with it, it would settle into her lungs and could make a home there for decades, leading to a more rapid decline in lung function. We take cleaning and germ control very seriously at our house!
NUTRITIONIST: Our nutritionist reviews Caroline's weight gain, current percentile, eating habits and intake. She helps us determine if Caroline's enzyme does needs adjusted as well. I make calls to Caroline's nutritionist when I notice signs of malabsorption or have questions about anything pertaining to eating. For example, we just spoke on the phone yesterday about when and how to start Caroline on solids, the use of probiotics and her most recent positive signs of absorption.
SOCIAL WORKER: At clinic we also speak to a social worker who helps direct us to financial assistance programs and makes sure we are able to get everything we need to care for Caroline. Caroline's medical bills easily cost $5,000 a month. Her help has been crucial for us to find assistance with these bills. The social worker is also an emotional support to us as and often asks how we are doing with her diagnosis and care.
RESPIRATORY THERAPIST: The physical therapist teaches us how to give Caroline chest physical therapy and airway clearance pats. We have a special tool we use to pat all areas of her lungs and break up mucus building up inside of her. We do this therapy twice a day, every day, for 40 minutes each.
PULMONOLOGIST: The last person we see on clinic days is Caroline's pulmonologist. He is the director of our hospital's CF center. He reviews all of her vitals, stats, labs and progress. He gives a physical exam to Caroline to check for bowel obstruction, constipation, wheezing, mucus in the lungs, sinus problems, and developmental issues. He answers any questions we have about the disease, the future, her progress, germ control...anything!
Our clinic appointments take anywhere from 2-3 hours. It's a looong day! We have become so close with our care team and can see them becoming like family members to us over the next several years.
If you want to see a few video clips of one of our recent CF Clinic Appointments you can find them on my Instagram stories linked below.
Our CF Journey Instagram
Our Clinic Day Instagram Story
Caroline at our most recent clinic appointment! She's doing great!
Comments
Post a Comment