The Appointment - November 2007

Once every 3 months, we need to go through the ordeal of taking Ginny to her Cystic Fibrosis Clinic appointment at JH. I say ordeal because of the amount of time it actually takes for the appointment, the hassle it can be to drive and park, the stress for the couple of days leading up to the appointment and the collapse which occurs after.

Below is Appointment Summary for November 2007:
1. Height, Weight, Blood Pressure
November - 64.5 lbs - INCREASED 6.5 lbs!!!!!!!
2. PFTs - Pulmonary Function Tests
118% which is down from her normal 130%. Yes, over 100% sounds great and is fantastic. However, ANY decrease is NOT good!!!!!!
3. Doctor
Review of Height-Weight Ratio: Height - Weight Ratio: IDEAL = 50%+ PREVIOUS: 29% CURRENT: 46% !!!!!!!!!!!! WOW!!!!!!!! She is almost where they want her to be. Where they have been hounding her/us to get her up to. AMAZING!!!!!! Dr. R was so complimentary. He used words such as excellent, proud, good job and ended with "Keep up the good work!" Wow! We've waited a long time to hear that! Then, there's the throat swab which is done every time.
4. Nutritionist
Reviewed the eating habits and suggests how to increase calories. Not much to comment on this appointment due to the excellent increase in weight and height-weight ratio.
5. Nurse
Reviewed equipment, cleaning, directions and needs for assistance with insurance company. She gives us handouts to help at home, school and anywhere else as needed.
6. Pharmacist
Reviewed all medications, dosages, writes out new scripts as needed.
7. Respiratory/Physical Therapist
She came in to review the breathing treatments and Chest PT. This did not go well and we need to come up with processes to improve. This includes at her father's house, maybe there even more so than mine. He hasn't cracked the Vest out in a long time which the PT told Ginny was unacceptable. This portion of the appointment left her in tears and me feeling a bit nauseous.
8. Psych
She came in to give us ideas for PT incentive and to cheer Ginny up.
9. Research
This time, we participated in a research survey. It consisted of 3 questionnaire papers on my part and one on Ginny's part. The researcher read Ginny's and recorded her responses, I filled mine out at the same time. It was trying to gauge how the nutrition portion, self-esteem and feelings about the protocols by the family and the patient.

OTHERS - not this time, but once per year blood has to be drawn. Every other year, x-rays are taken. Then, there are the times that other doctors come in.....never sure who or why they are there, but it is a teaching hospital......one day I'll have to go over my theory about that!!!!