Day 15

We had a great thanksgiving and did all the Christmas decorations. Last year, I didn't get it all done, so I was determined this year. It was really fun too because Fawkes was helping. We have an abundant amount of ornaments about 15 inches off the ground which is adorable. Fawkes picked out a few favorites too. The tug boat. It's from one of those golden books.

Here we go again to Philly. It's a "quicker" appointment this time. But, it's still a trip. That's the thing about these visits; life doesn't stop for us. There's no break. Just constant CF responsibility. Enzymes, zantac, vitamins, Orkambi, secure the packet, treatments, eat high calorie meals, prescriptions, medical bills, FSA filing, pack the car, get McDonalds to get on the road, save the receipt to put in the expense folder, on and on. It doesn't let up. Oh, and get food, do laundry, go to work, more treatments, more medicine. I would love a break. Sigh. That's not in the cards for us.

We got in late Monday night. We work during the day, do afternoon treatment, pack the car and head out which puts us eating dinner in the car and at the hotel by 8:30. We basically shower and go to bed. Get up next morning, unpack vest, do vest, repack vest, repack everything, eat breakfast and head to the hospital.

This appointment was vitals, EKG, stool sample (oh so fun to collect and transport), spirometry (the skateboard test) pre- and post- blood draws. I was already anxious about this appointment for the two blood draws and had 2 gifts ready. It was terrible. For the pre-dose blood draw she had to poke him 3 times to get enough blood. Poor Fawkes was screaming. It took 3 of us to hold him down and get it done. After they took out the needle, I had an overwhelming need to cry a bit, so I grabbed Fawkes and both of us went to the hallway to get some air. He didn't like that I cried, but it hurt me that he hurt. So bad.

Then we took the drug and ate an early lunch (since he has to take the drug with a high fat meal).  Then, it was waiting. We did our mask treatment that we skipped so we could do the breathing test, played puzzles, colored, all the fun you can possibly have in a hospital room. They came to take the post- blood draw and this time it took 2 pokes. Ugh.

Hudson had heard great things about the Franklin Institute and a new dinosaur exhibit just opened. We made our way there only to find the exhibit was at max capacity (which was just as well because it would have been $100 for all of us, and both Fawkes and I desperately needed a nap). We checked out the gift shop and found a battery-operated train. Fawkes had been wanting one around the Christmas tree. I know I'm spoiling him, but it's so hard not to when he has to go through so much that other kids don't even have to think about.

We went home and both Fawkes and I napped in the car while Hudson drove through the gloomy rain. Got home, unpacked, did treatment, ate some food, and got ready for the next day. Back to work. Next time we are staying on Tuesday night too.

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