Ugh, Spoke too Soon

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Breathing in some fresh air on the front stoop

Too Soon

Put those celebratory beers away for a job well done Mom and Dad (just kidding, you can still have one). Apparently I spoke too soon with respect to all things being well on the health front. That’s the thing about cystic fibrosis which many people without knowledge of the disease fail to understand – to the naked eye, I look healthy and as though I’m doing really well, when in reality that’s partly true at best. The truth is that things are never truly 100% fine and I’ll never be 100% healthy. In this case, the doctors who “put eyes” on me said, I look great and were happy with what they saw…

Then my lab work, x-ray, and throat culture results came in after I left Children’s National. Dr. Shukla called Mom late one night while Dad wrapped up my nightly Chest Physiotherapy (CPT). My x-ray didn’t look great, my blood work showed elevated white blood cell counts, and my culture started to show staph infection in my lungs.

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Chest X-Ray

Visibly upset, Dad and I knew something was wrong. Mom became quiet, listening to Dr. Shukla closely for the next twenty minutes as he shared the diagnosis and plan. It was back on antibiotics (XXXXX) and extra CPT until I kick this infection. When taking my antibiotics, I demonstrate my super-human strength by closing my mouth, wrestling away from Dad’s grips, and spitting any antibiotic that squirts into my mouth back onto Mom and Dad’s faces. It’s quite the scene. I wonder what people would think if they saw this going down.

The Difficult Balance

Mom and Dad do a great job of keeping a clean house (weekly vacuuming, wiping down of surfaces, etc.), but when infection, sickness, or anything rears its head, Mom goes into overdrive on the cleaning and throwing anything potentially contaminated out. While Dad likes a tidy home, Mama in overdrive can be a bit overbearing/overwhelming to say the least. Dad told her it was crazy to throw everything out and replace with new, so she consulted with Dr. Shukla to ask if she was crazy. The verdict, mom is cray cray and she does not need to throw out my toothbrush each day for fear of recontamination. In all seriousness, this paranoia is not at all uncommon for parents and caregivers of those with cystic fibrosis. They want the best for us. Dad forgives you Mom, but we need to come up with a good nickname for when you kick it into overdrive.

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Scott’s Run Nature Preserve 

Recently Mom pleaded with Dad how everything – dust, dirt, germs, crowds – scares her and that she’s terrified to travel south to Dad’s family’s farm for my great grandmother’s 95th birthday party this upcoming weekend given all the rain. This is totally understandably given that Mom is a first time parent, a parent of child with CF (any disease for that matter), I have my first lung infection, etc. While Dad totally understands where Mom is coming from, he also wants me to have experiences that can’t be had in the small confines of Arlington. While Arlington is our safe haven, I bet there isn’t a cow, horse, combine, pumpkin patch, or anything like that in the entire county for me to get excited about. I know there aren’t dirt roads or ponds filled with large mouth bass, sunfish, and crappies. There is the Potomac River, but that can’t match the beauty of the James River.

All I’m really trying to say is that I get both Mom and Dad’s sides feel bad for the often stressful situation it places on them. Mom and Dad both have my safety and health as their top priority, but I think Dad errs on the side of living. That or either he misses his family far more than he’s willing to ever admit. It could also be the fact that living also allows for the guard to be let down some – not entirely because he’s still quick to swoop in and rip me off the kitchen table when I climb up there or pick me up when I fall, but there’s sort of a sense of safety for him at home.

Vest

The timing couldn’t have been better for my vest to arrive as I’m on double therapy duty until I’ve kicked the infection. By far the most expensive item in our house ($15,000), the jury is still out on when we can call the vest a good thing. Initially, it should come as no surprise that the vest is traumatic for me, my parents, and my little cousin Hayden. In a brilliant acting job, Hayden came over to wear my vest and show me that it’s not that bad/scary, but after leaving she communicated to Aunt Rachel that it just didn’t seem fair that I have to wear it all the time. While it will free Mom and Dad up from having to do manual CPT so they can do things like get dinner ready, do laundry, what-have-you, it seems so “permanent” in way. Using this vest will become so entrenched in my daily routine that it will eventually become second nature, but right not it’s just difficult to process despite the advantages it brings. I’m already crying less and less with each time I use the vest.

 

Late Gift & a Few Thanks

I have to thank Uncle P for the awesome tractor. The pedal is a bit tough to reach but the trailer is awesome and I love throwing all my trucks in there. I’ll do my best not to flip it on the hilly terrain like I did with the ATV Bama gave me when I was less than a year old. Haha.

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John Deere Tractor

 

#HTTR

 

Thanks Aunt Rae Rae for watching after me some while Bama and Pop were on their trips to New England and Charlottesville, VA.

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Me and Aunt Rae Rae

Also, huge thanks to the Gummeys for hooking me up with some solid threads. I received a lot of compliments on this sweater with the crab.

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Good weekend for fans of the DMV. Both the Nationals and Orioles made the playoffs and the Washington Redskins evened up their record to 2-2 on the season. O’s will travel to Toronto for the wild card (winner to play Texas Rangers) and Nationals host the LA Dodgers. Baltimore Ravens lost today, but don’t really count since the Orioles were the only baseball team in the area for so many years and DC has always had a football team.

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Ugh, Spoke too Soon

9 Month Checkup, Halloween, PSA, and Maybe a New House

Urban Hunting
Urban Hunting

Nine Month Checkup – My nine month checkup at Children’s National went well this past Wednesday. Doctors say everything looked good. My weight remains in the 50th percentile and my lungs sound good. The doctors were really pleased with my happy demeanor. My next follow-up is scheduled for January (after the new year).

Listening to my Lungs
Dr. Shukla listening to my lungs

Halloween – For my first Halloween, I spent where probably anyone could have guessed – TMZ’s house in Madison Manor. Pop has been building a fire in the park for the last 30+ years. Unfortunately for cystic fibrosis sufferers, its not advisable for me to hang out around a bon fire…let alone one that reaches 30 feet tall so I hung out on the back deck and watched from a distance. For anyone curious…the fire lights up at/around 6:30 PM each Halloween.

Madison Manor Bon Fire
Madison Manor Bon Fire

And just because I wore a obligatory super hero costume, it didn’t mean I got to skip out on my Chest Physiotherapy (CPT). Even Superman has to knock out his Chest PT.

Super Chest PT
Super Chest PT

Public Service Announcement – While you may think I don’t know what I’m talking about, my team of doctors insist that anyone who’s hanging out with me get their flu shots. It is so important that my friends and family all get their flu shots because if you get the flu and then spread it to me…that is no good (chance I have to be hospitalized)! Believe it or not, it is actually quite cool to get your flu shot. Check out my cousins! 🙂 #NoTears

Cousins Getting Their Flu Shots
Cousins Getting Their Flu Shots

New House – So in an effort to move out of the ever, shrinking Rosslyn condo which poses environmental health hazards (carpeted floors, smokers, etc), mom and dad finally had an offer accepted on a house. While this is great, the home inspector has mom and dad a bit worried as there is a decent likelihood of asbestos in the basement. While asbestos are not good for anyone, it’s probably worst for someone with Cystic Fibrosis, so mom and dad are assessing the situation to see if we should move forward or pull out of their offer.

NFL – Oh yeah, almost forgot. 9:00 AM games are cool, but live streaming from the Internet…not so much.

What Happened to Baby Einstein? Who are the Bills?
What happened to Baby Einstein? Who are the Bills and why does Berman say no one circles the wagons like the Buffalo Bills?

Since everyone out there thinks I’m happy all the time, I thought I’d leave you with this gem.

I'm not always happy
I’m not always happy
9 Month Checkup, Halloween, PSA, and Maybe a New House