Screening

We packed up and on the way he said, mommy why are we going to Philly. I told him we had to go to the dr. He said are they going to give me a shot. No shot buddy, What about a pinch?  I don't know. We'll see. Why do I have to go to the dr mommy? That was it, tears were streaming down my face. It is so unfair, he has to go to the dr and do all these treatments, and the stress of trying to put all this together and the unknown and the trail becoming a reality. It was only 2 min and I was better.

We stopped and saw the liberty bell, which was very influential for Fawkes. He now knows, we're going to Philly and he says, to see the bell? It's cracked. Everything was being prepped for Hillary and a huge show the next night for the day before the election.

We went to dinner at a fancy college bar, but no bar like GT or UF. UPenn is Ivy League. I did not realize. Then we looked up tuition, wow, so expensive.

We woke up the next morning, did treatment, ate breakfast at the hotel, then packed up for a 6 hour dr appt. We wanted to go to Phil museum of art and do the Rocky thing. Turns out the museum is closed on Mondays, but we really didn’t have time anyway. We ran up the stairs, threw our hands up, listened to eye of the tiger, then went down and posed next to Rocky, himself.

Our nurse went through the consent form page by page to ensure we understood what we were getting into.

I signed it.

I had to.

For my baby.

Started off with vitals, easy, blood pressure, temperature, height weight. Reviewed medications, so annoying I need to just make business cards.

Did an EKG, also ok. Fawkes liked the stickers, He wouldn't let me take them off. A doctor came in, look in ears nose throat, listened to lungs, also pretty easy. I think we  ate lunch. I brought him a lunchables, it's amazing, it has a drink and a Reese's peanut butter cup all included.

Then, it got harder. The sweat test. I have bad memories of sweat test. We tried to do one of his earlier CF appointments when he was a month old or so. They had done bloodwork and took way too many vials from a newborn (and then didn't even use 2 of them), and then put these little electrodes on an already upset newborn and wrapped his arm with cellophane. Afterward they put on the sweat collector and he was screaming the whole time. Finally the time was up and they looked and not enough sweat had collected, it needed 2 spins, so they didn’t even turn it in. All that for nothing. Anyway, the sweat test consists of hooking up red and black leads to his arm to stimulate sweat. It's a definite current, and Fawkes immediately did not like it. It was 5 minutes; might as well have been an eternity. Finally she disconnected them and put on a blue bracelet with a plastic coil. It stayed on his arm for 20 minutes to collect sweat. We got enough to complete the test. It was so awful, I gave him his little gift for the day. It was a game of go fish. I tried to teach him to play, but instead he sorted all the cards into like piles. Such an organizer; just like mommy.

Breathing LCI- He gets hooked up to a mask that blows ambient air and then pure oxygen. Here's the explanation, "This test determines how well your child’s lungs are functioning. For this test, your child will be required to wear either a mouth piece or a mask while resting comfortably and breathing at rest. During this test your child will breathe in room air for a short period followed by pure oxygen. Your child will not be able to detect the difference between the room air and pure oxygen." They collect his output ratio. We had to do it 3 times. At first Fawkes was holding his breath and not breathing regularly, he's a toddler, not CF-related, so we had to do it again. We had Thomas the train on so he went in zombie mode and we got a great test in. the 3rd test was not as good, then the 4th test was ok.

Had to walk back to get dreaded Bloodwork. We call it a pinch. An hour before I put lidocaine on his arm and a dressing which is supposed to numb him, but it never works. I hold him down while he screams for what seems like forever. While the blood is collected, I show him the big present and open it to try and distract him. They were action plates, like fashion plates but with super heroes. It turned out this was a great idea because next we went to get an eye appt.

Something happened  and we were not scheduled an appointment and no kidding, there were probably 20 people in line. Luckily, when you're in a trial that brings in a bunch of money for your hospital, the coordinator has some people she can call.  We still had to wait for 45 min, but we made a lot of superheroes. He went back and was so amazing. At first the lady gave him a laminated sheet with a T, H, O, and V. She asked him to point to the letter he saw on the screen of various sizes. After the first letter he called out, T, then O, then H, she threw the sheet aside and just did the exam so fast. We only paused when V came up, it wasn't because he couldn't see the letter, it was because I said it was a hard one, but he got it! A few other follow the sticker tests, and then dilation drops.

While the drops needed to take effect, 30 min, we went and did PFTs. Now, these are hard. Usually, CF patients don't start these until 5 or 6 because it's a very specific test. They put a clip on his nose and have him practice with a birthday noise maker. Then, you have a screen with a skateboarder that has to get across a gap. At this point, it's late in the afternoon, Fawkes hasn't had a nap which he normally takes by 1230 and he's doing something really difficult. He was being silly and blowing through his nose, or not putting his mouth on the thing. And all the adults are tired too, and we were about to quit. I had already taken him out of the room to give him a pep talk, and he did it. We needed 2 more. He did them in a row. We all cheered, and he was so happy.

Then we went back to the eye place and they checked his pupils. That was it, then we could get all our stuff and go back to the hotel. The little guy was exhausted. So were we. She sent us home with a toilet hat so we could collect urine sample and turn it in the next day. Fawkes did not like to pee in the bowl which is funny because he just quit doing that 2 months ago.

The hotel has a free happy hour and appetizers. I went down and had glasses of wine. I went back up to the room and just bawled for about 10 minutes. It was so much bottled up from the day and weeks prior. All the anxieties, the unknown, the stress.

Hudson went and picked us up some food. We did treatment, took a shower, and went to bed.

Next morning, treatment, breakfast, packing, decided to head home and call it a day. We dropped off a urine sample, goodbye Philly. Be back soon.


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