Friday, April 12

April CF Clinic

We left for CF clinic this morning. It was a pretty rainy morning driving through DC and onto Baltimore to see Madeline's doctors at Hopkins. After a few traffic snarls, we arrived and waited to be checked in. Madeline chose to do the ipad while she waited to be called back. It's a plus during clinic day.

(Thankfully, we got through the winter months with only 2 colds. Both colds ended with a lingering cough, which we used antibiotics to treat. Luckily those coughs disappeared  after antibiotics. We felt pretty good about going into this clinic visit knowing that she had a pretty good winter.  )

Once we were called back to CF Clinic, we met with the pharmacist (to review and change if needed) her medication list, the nutritionist (review what she was eating and how see she was getting those extra calories and fat that's required for CF patients), her CF doctor, CF nurse (use of the Sidestream nebulizer), and finally the Respiratory Tech to go over breathing techniques.
We were very interested in the meeting with our Respiratory Tech, Ms. Karen. She was able to go over some breathing techniques that would be beneficial for Madeline to learn that would help her clear mucus in her airways. Many adult CF patients use this technique called "huffing." It requires a patient to understand how to follow directions and  Madeline is at an age when she can begin to do this.

Huffing is described as breathing in using your diaphragm, holding your breath, and forcefully blowing through a wide open mouth. Ms. Karen allowed us to practice this technique with Madeline so we could help her practice this at home. Usually CF patients do this during their VEST treatments but because Madeline is so young she recommended doing a few huffs after her treatment is over. Eventually as she gets older, huffing will become part of her daily breathing techniques while she does the vest. Madeline also practiced breathing games with Ms. Karen such as using a straw to move a balled up paper towel.

Ms. Karen and Madeline doing a breathing game.

We also met with our CF Clinic nurse, Ms. Donna and discussed trying the Sidestream Nebulizer. Usually this neb is used when children are around 5 or 6 years of age because it requires them to breathe through their mouth in order to get all inhaled medications adequately. We will begin working with Madeline on using this so eventually she can get away from using the pediatric masks and use other nebulizer with mouthpieces. It was recommended that we find a nose clip to help teach Madeline to breathe through her mouth until she is old enough to fully understand. It also takes some practice getting use to holding the Sidestream upright and resting it in your mouth. We hope by practicing with it Madeline will get use to it and other nebulizers that have mouthpieces.

sidestream nebulizer

 Overall, we had a good clinic visit. Madeline's doctor mentioned that her lungs sounded clear and her BMI was great at 87%.  We will wait for her culture results to come in early next week. Hopefully the dreaded Pseudo won't be there but, our intuition tells us that it will most likely make its appearance.
Regardless, we are very happy that Madeline is thriving despite Cystic Fibrosis and pseudo.
We are just thankful for our healthy, happy little girl!

After a long day with countless nurses and doctors, we gave Madeline a "Pinkalicious" doll. She is in love with the pictures books in the Pickalicious series. She didn't let her doll out of her arms and took it to bed.

1 comment:

  1. I just found your blog today and I am so impressed by you and your family!!! I am a CFer as well 28 yrs old. I love talking to parents about their kids and CF. I am lucky to have a loving wife and a daughter now 6 months.

    Your daughter is amazing. I am so glad to hear she is doing well. Keep up the positiveness in the house.

    I have a blog and it details my CF life and our IVF journey feel free to read. I will be following your blog Sandy :)


Thoughts? Comments? Your comments help us stay strong!