Tuesday, August 26

CF Clinic- August

We made the trek up to Hopkins.  This would be Madeline's typical CF check up
( usually patients go every 3 months) plus the annual work ups. Usually annual work ups for CF patients include a chest x-Ray ( to see in there is any inflammation, mucous plugs, and to give an other baseline of their lung health via picture), lab work ( usually to monitor vitamin levels since CFpatients don't absorb vitamins easily and have to be on specially formulated cf vitamins, check for liver enzymes- another complication of cf, etc.) We were also told by the clinic that Madeline would continue to " practice" doing PFTs like she did at last clinic visit. Around the age of 5 CF patients begin practicing a blowing technique for PFTs ( or pulmonary function tests). These tests usually gives a more accurate idea of what is going on in the lungs that an xray could not show. Oftentimes PFTs give doctors a variety of numbers that show airflow through and out of the lungs. Once the blowing technique or PFTs are mastered, data often can indicate infection, etc. PFTS are another way to monitor CF and unfortunately another thing to worry about as a cf mom. Numbers are everything. Right now they expect her numbers are normal since she is beginning to understand how to blow inhale and exhale correctly while putting this huge tube in her mouth. I've tried it and it's a ton harder than it looks!

Once there we went to the main hospital to get a chest x-ray This was a baseline x-ray. Usually CF patients get routine chest x-rays every 1-2 years to check for infections and abnormalities in the lungs.

waiting for x-ray

xray of lung

waiting to be called back to for stats

Stats check (weight, blood pressure, oxygen levels, pulse, and height)

Showing off her Elsa sticker she got from doing stats

blood draw

waiting to see doctor

Dr. R and Madeline

Overall Madeline had a great visit. She is very tall - over 46.5 in inches which puts her at 93 percentile for height, 52 pounds at the 90th percentile for weight, and a BMI of 83%. We were pleased to see that her weight is staying in despite how tall she is continually growing.

Her x-ray came back as "normal" and she was incredibly brave during her blood draw- never crying. Her lab reports came back last week. They ran about 10 reports and close to ten viles of blood for various vitamin level tests ( since cf patients don't absorb vitamins as well as non cfers), liver enzyme levels, etc. thankfully all her vitamin levels and blood tests came back within normal range. We also got a call that she is still culturing "very light pseudo" . So no change in plans for her in the future. The clinic was very happy with her standings now. We will continue on with Tobi every other month. Starting kindergarten in September will definitely  make our schedules busy will full time school and numerous treatments. She's a trooper though and we are so thankful for her good health right now.
We know that CF can take a turn for the worst at a minutes notice so celebrating the healthy times are super important to us.

We hope as Madeline begin Kindergarten next week that her health continues to soar like it has in the past. We are nervous yet excited for another school year!

We would love for you to join our team or donate to our Great Strides Walk. Please click the link below to help support Madeline and others with CF. We thank you so very much!


1 comment:

  1. So happy to see a blog about M. Sounds like she is doing great AND was a rock star during blood draws. I can't believe how grown up she looks!


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