|Chocolate Pumpkin Cupcakes with Cinnamon Buttercream Icing|
The cupcakes we took to CF clinic team.
Rachel had clinic last Wednesday. The good thing; the important thing is that she's doing great. Her PFT's were down a little - putting them at 108% . Come on, can't really complain about that. While she's been active, I got to thinking and she hasn't been as active as before. So, I'm going to get her (and me) moving more. Moving like we were before.
I do have to say that I was very disappointed and put out with some of the Tripler staff that day. When we got there, we were told (with attitude) to wait in the hall when there is a policy in place for patients with CF to be taken to a room right away. We wait in the hall for 15 minutes (10 past our appointment time) and what do you know, another CF patient comes in for their appointment. So, there are now two CF patients told to wait in the hall together?!
When Rachel is finally chosen (yea, I'm being a smart ass), we followed the nurse (or just a girl in scrubs, yea smart ass again). I thought she was taking us to a room. The fact of the matter is, she had no clue what she was going to do with us. We walk down the hall behind her and all the while she saying, "Let's go to room 11. No, let's go to room 17. No, room 11, room 17." Growing red faced fast, I say (you guessed it - smart ass tone) "Instead of roaming the halls, why don't we ask the doctor where he wants her?" I know.... genius!! We finally get to one of our usual rooms and I thank God. At least we're not in the hall anymore....right? Shortly after getting into the room, scrub girl takes Rachel's temp, blood pressure and O2 levels. Then we get to wait 15 more minutes before anything gets done. Yay! In that 15 minutes, another girl in scrubs comes by and asked if we were ready for the flu shot. Oh, geez! Can anybody check a darn chart? I see clearly why limbs are marked with a Sharpie permanent marker before an amputation is performed! I drop my head and say, "Nooooo, we are here for CF clinic." So, scrub girl leaves and do you believe she came back to tell me she got it figured out? Serious! Well, if you are someone who really knows me, you know what was going through my head. Finally, after the 15 minutes, now 30 minutes past appointment time, scrub girl comes to take Rachel to get weight and height. As we are heading to get height and weight, child life comes to visit with Rachel. She looks puzzled as to why we are just now going to get that done. No worries....I filled her in on all the details when we got back to the room. At this point, things finally began to run smoothly. The rest of the appointment went as usual, which is great! I get so frustrated because there is a Tripler policy in place/protocol for people/patients with CF. Why is it still an issue? It was going good for so long in the pediatric dept. As for the rest of the hospital, well that has always been an issue.
After we got home, I did what I usually do. And that, my friend, was fill out a nice long complaint accompanied with suggestions on how to fix it! You know, what good is a complaint without any idea on how to fix it...right? In the very near future, Rachel has a routine abdominal ultrasound. I'm going to pray the radiology dept. has it together because, I tell you what....I'm on the verge of going all redneck on somebody. ha