The woes of CF......

Today’s clinic visits started at 1:30 with pulmonology. I was dreading the weigh in, thinking that she probably held her own, but didn’t gain. Nope, she has officially LOST weight now. I almost cried right there on the spot.

After a long discussion with Pulm., Nutrition, Research, G.I., this is what they have decided to do…….

Pulmonology has ordered:

1. CF Respiratory Screen (much to Zoe’s resp. nurses surprise, Zoe coughed a nice thick, mucousy cough when she went to swab her, so got what she called an awesome “gooby”! Her nurse was so excited to get that from Zoe, she ran it to the lab herself!)
2. Hemoglobin A1C
3. Glucose/insulin tolerance test – 2 hour ( to check for CFRD-Cystic Fibrosis Related Diabetes)
4. Continue on her oral Bactrim for an extra 2 weeks, finish the 2 weeks of inhaled antibiotic, Gentamicin.

G. I. has ordered:

1. Vitamin A Assay
2. Vitamin E Assay
3. Calcifediol (250H Vitamin D-3) Assay
4. CBC, PLT and Diff
5. C-Reactive Protein
6. Hepatic function Panel>1 yr.
7. Prealbumin Assay
8. Tissue Transglutaminase IGA/IGG
9. IGA Immunoglobulin Assay
10. Fecal Fat, Quantitive 48 hour

The big thing was to try to get all this all scheduled at the same time. Thank God, our research specialist, Rena, was there. She is awesome! She was at one of Zoe’s blood draws and saw first hand how hard of a stick she is, and that she turned as white as a sheet, almost fainted.
She pulled some strings, got Zoe her glucose test for 8:30 Tuesday (they are backed up until the end of May)! They also will do an I.V. so, instead of them having to find a vein 3 times for the glucose test, then again for all the other blood work, they will just access the I.V. Thank you Rena, only ONE stick. Also, they will be able to insert a NG tube to give her the glucose syrup if she won’t drink it herself. We knew this might be an issue considering she won’t drink anything except water. I am going to try to use syringes, telling her it is a medicine that she HAS to take, that normally works…..but it is 4 ounces…a lot to put through a syringe.

Also, starting Thursday I have to do a detail food log, exactly how much she eats (measuring everything), what I added to it (butter, cheese, etc…) the exact amount of fat and calories she ate. We do this for 5 days. On the last 2 days (Sunday and Monday) we also have to collect ALL her stools in these containers they gave me and freeze them. I turn them all in ( to a different lab) on Tuesday when we go in for the glucose testing and blood work. Mind you, all these tests on Tuesday, are on her 5 year birthday. Ugghh. Doesn’t CF suck? I think we might tell her birthday is another day. She is still young enough where we can get away with that.

I really appreciate that her doctors are checking all possible causes of no weight gain/weight loss before just immediately putting in a g-tube. If all these tests come out fine, then they said we talk about g-tube.

I have a lot to blog about…..my parents party….going to Mels…..but I am kind of down tonight after todays Dr. appts…..so, thought I would just update on our little Zoe tonight. Please continue to hold her in prayer……thank you from the bottom of our hearts….

Love,
Jada & Scott