November 1st Clinic

What a day it has been, Courtney’s clinic appointment went OK could have been worse but could have been better.

She gained weight she is now 50lbs I NEVER though she would get there she grew a half a inch so there for her bmi went down. If she gains 2lbs by January she will get 1 $10.00 gift card to Walmart if she can gains 5lbs by January she gets 2 $10.00 gift cards to Walmart . Throat culture was OK today it took 4 people to hold her down, one day she will just let them do it with out a fight or even better she will be able to spit stuff up. We are going from Zenpep 10’s to 15’s to see if that helps with her gas. Her PFTs were down a little bit and I think that is because we didn’t do treatment this morning but there was no way I was going to get her up at 5 this morning when I knew she was going to be going to school after her visit, but one of her other numbers were up .

We are going from Albuterol to Xopenex going from Nasonex to Nasacort to see if that helps since they other one seems to give her bloody noses when she does it. We are going to let her stay up later to see if she falls asleep faster since I can put her to bed at 8:00 and she won’t go to sleep until 9ish or later.

I had also asked the Dr. about two meds that could be used with the arrow neb and needless to say I about got my head bit of and pretty much got made to feel like a crappy parent. She basically told me to not get them and that CT scans don’t really help with a CF patients sinus and that she basically only likes one ENT due to them doing 3d images. OK I understand that but do you want to make the 3 hour round trip and pay for my gas for Courtney to go see this ENT ? The ENT Courtney see’s now also has other CF patients so right now I am in a tight spot. I don’t want my daughter to have to have another sinus surgery but if she needs it then yes but the Dr . is basically telling me that when she needs it she will let me know. She is a control freak at times. I just want what’s best for my daughter