Saturday, October 6

Clinic Update

We drove up to Hopkins for Madeline's CF Clinic appointment on Friday. I was clearly dreading this appointment since it was Madeline's Annual check up complete with a blood draw and possible x-ray. Usually CF centers require CF patients to get yearly checks of both of these tests. The blood draws mostly measure vitamin levels (since CF patients have a harder time absorbing vitmains) and the x-ray obviously gives everyone a very clear picture of how the lungs are doing. (Since she spent a week inpatient in January of this year for IV antibotics and got an x-ray then- we didn't have to do one!)

Lucky for us, Madeline is enthralled with the ipad so this kept her busy through most of the waiting.

Waiting to get height, weight, and oxygen levels in the general waiting room......

Finally in CF Clinic and waiting to see the pharmacist, nurse, and doctor....

Madeline HATES sitting or laying on the exam table so Daddy thought hee would try it out.

Thanks goodness for the ipad since Madeline usually enters her "Ipad bubble" at clinic.
In all seriousness, she tries hard to block out her surroundings there- including people that enter the room. She ususally freaks out a bit when doctors try to say hi to her, people offer her a sticker, or even smile. Unfortuneatly, my little girl has learned to not trust many in CF clinic. She clearly remembers all her inpatient experiences. Which is why I was very thankful for her "ipad bubble". There was a lot of screaming and crying coming from the rooms surrounding us. Luckily, she keep trucking away on the Ipad never noticing the noise.

Still waiting.....

After listening to her lungs, checking her ears, and getting a throat swab (culture for bacteria), Dr R had great things to say about her health. Madeline gained over 3 pounds in 3 months leaving her in BMI at 87% (Most clinic like their patients at a BMI of 50% or greater- obviously the higher- the better.) She now weights 40.2 lbs and is 39 inches tall. Her lungs sounded great.

We also met with the lab tech so she could place some EMLA cream (numbing cream) on Madeline's arm prior to her blood draw. I called the nurse the day before to see if we should get a RX for it. She was more than happy to write one for us. After waiting 45 minutes for the EMLA cream to do "it's numbing magic", we headed over to the lab for a blood draw.

Madeline was so enthralled with her Ipad game that she allowed the lab technician to "borrow"her arm. Because of the EMLA cream she never even looked over to see what was happening. Once the nurse finished getting her 3 plus vials of blood, she began taking the needle out. Madeline glanced over once but never flinched. EMLA cream is my best friend now! I don't think Madeline had a clue she had a needle in her arm!

We were cleared to return in 3 months and should hear about her culture results early this week.

We are fully expecting the NASTY bug  called pseudo to be there but hopefully nothing else new will be present  More updates as the week goes on and more time to enjoy all the positives of Friday's check-up. We have so much to be thankful for.  I have my fingers crossed that her culture results prove just as good.

So happy to be leaving.....
And even happier to "build her own bear" for the 1st time....

                                                And clearly exhausted after a full day.


  1. Kaleb does that too. He ignores those around him in the medical world. Especially in the hospital when we are here. He gets to the point when he is just DONE and doesn't want to give them the time of day!
    Hope the cultures come back clean!

  2. Looks like she was actually building her own kitty?? :) Glad the appointment went well. I am SO getting some of the EMLA cream - thanks for sharing that! Praying for good culture results!!


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