Where is Mama’s Cape?

Where’s Mama’s Cape?

Mama straight up doing super hero stuff lately.

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You mean to tell me Mom doesn’t have a cape?

Well, it’s been a hell of a week or so for us (since my last post). I briefly touched on a virus or something that I picked up recently, knowing full well, I hadn’t kicked it, but also didn’t know what was going on fully so couldn’t really elaborate. That’s sort of the thing with CF – is that you don’t know how bad something is or can become or at what point you should treat because the last thing you want to do is prematurely begin treating with antibiotics when we all know I’ll be on them a lot over the course of my life. What is seemingly a simple virus ends up creating much higher levels of stress, harm, and time spent doing therapies than anyone can truly imagine (unless you have CF).

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I had recently been seen by my Pulmonary team (June 7) and by all accounts, I was doing well. It wasn’t until a a couple weeks later (June 21) that I came down with a terrible fever which scared Mom and Dad. Having seen me spike a fever before, Mom and Dad quickly opted for the Motrin, Tylenol, Motrin regimen and took me to my pediatrician to be tested for strep (strep test was negative). They also began performing the “Sick Plan”. While that suppressed the fever that I demonstrated over the course of three days, it wasn’t able to resolve what we came to find out days later.

Later that evening, Mom stayed with me and my spiked fever while Dad went to play softball with his men’s team in Arlington. Dad, being Dad, thought he was still in his twenties so when he sharply hit a ball to the team’s third baseman, he thought he needed to “grab an extra gear” to avoid getting thrown out at first base. Silly Da-da!

Dad’s brain said to run faster, his body said fat chance old man.

In doing so, he suffered a full-thickness rupture of his rectus femoris muscle (quadricep) in the upper half of his thigh. The photos are pretty graphic (and impossible to show you the front of leg without cropping the image), but for as bad as the injury is (he actually avoided surgery), I think we can all agree that it doesn’t come close to how and bad CF is.

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Mom now faced the daunting task of working and looking after two* of us boys – one of us 2 years old and not feeling well, but still manages to run around and one of us mid-thirties and no longer capable of walking, cooking, cleaning, helping out with chasing me :). To say Mom was upset would be the biggest understatement of all time. Mom’s non sympathetic ways softened up a bit once she took Dad for his second opinion and she heard how bad the rupture was. The doctor even told her to “Be nice to him” on Friday (June 23).

* Sort of Under the Radar Announcement *

In the above paragraph, I mentioned Mom looking after two of us boys. Well, truth is…it could be more and Mom is extra deserving of a cape. Mom has been undergoing In Vitro Fertilization (IVF) treatments for the last few months with the help of Dad. The process actually started long ago, but given our family genetics, Mom and Dad opted to conduct additional genetic testing prior to implantation of the embryo in hopes of eliminating the possibility of another child having cystic fibrosis. Mom and Dad did not have fertility issues before, so this was more of a means to protect me and have a healthy child.

Mom and Dad wouldn’t trade me for the world, but Mom and Dad would do anything (any dollar amount, etc.) possible to ensure I was healthy. IVF offers Mom and Dad the best chance for their next child and it’s arguable that having another child with CF in the household would further bring down my health and I would bring down his/her’s depending on studies that are out there. For these reasons, Mom and Dad chose IVF.

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I’m going to be a big brother!

It’s still super-duper early to be announcing this, but Mom is already experiencing nausea and an upset stomach so she’s been a trooper. We believe she’s about six weeks or so along and she’s schedule to have a sonogram next week. Again, I know it’s early, but I feel that its necessary to explain how much Mom is taking on at the moment. For any other CF families out there, we’re happy to discuss this more!

Editor’s Note: Naturally, Mom and Dad were hesitant about announcing this, but felt this is our story, and it’s life. Nothing to hide and many of our closest friends and family knew we were attempting this often private endeavor.  

Children’s Culture & Lung Listen

On Monday, June 26, Mom and Dad felt my condition had worsened enough and felt it was best to get a culture from my team at Children’s. A nasty, nasty cough had developed over the weekend and Mom and Dad’s attempt to kick this with the “Sick Plan” and Motrin/Tylenol didn’t seem to help. For this of you who don’t know, the “Sick Plan” requires I double up on my therapies to four times a day. Dr. Sami took a listen to my lungs and agreed that I was not in good shape – sounded wheezy. She voiced to Mom that I may need to be admitted, but in the meantime we could try a steroid and increase nebulizer treatments to every 4 hours while we wait on results of the culture.

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Lying on floor, waiting for Mama to finish her shower

Therapies = No Fun + Ultimate Time Suck

While I felt relieved I didn’t have to be admitted, I knew I wasn’t in the clear. I knew the next few weeks were going to suck big time. To put it into perspective, I do therapies every four hours and each therapy is give or take thirty minutes, sans the time required to boil parts, go to drug stores, etc. For simple math we’ll say each therapy takes 30 minutes and I was doing 6 therapies a day. That’s 3 hours of therapies daily and over a 24 hours worth of therapies since I saw Dr. Sami a week ago and counting. At least Mom and Dad get to divide and conquer therapies. I’m not so lucky.

And because Mom felt left out on my first Therapies cut and there are more than enough photos of me doing therapy…

We nervously awaited a call from Children’s. For several days, we simply stuck with steroids and increased nebulizer treatment with little relief in site. Naturally this waiting makes us all very anxious since we don’t know what’s wrong and nothing seems to be working to improve my situation.

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Mom and Dad boiling my neb parts and mun-yas (pacifiers) twice daily.

Positive Culture

On Thursday, June 29 Dr. Sami contacted Mom to inform her that the culture came back positive for staph infection. This is the second time I’ve contracted staph and it’s never a good thing. There’s no telling where I picked it up from, but chances are the virus caused my lungs to produce more secretions which in turn caused my lungs to be stickier than normal and resulted in me being more prone to pick up staph.

This is one of the main reasons me, Mom, and Dad are so careful when others are sick or I am sick. We just sort of stick to ourselves and stay in our domain.

Positive cultures are also bittersweet since it means I’ve contracted something (bad), but at the same time we now have a way ahead to begin treatment (good).

The new plan entailed weaning off the the steroid (Prednisolone) and begin taking an antibiotic (Sulfameth-Trimeth) AKA Bactrim, all while continuing therapies every four hours. It’s 10mL of the antibiotic twice a day. Not sure if you know how much that its, but for a two year old like me, it’s far more than I ever want to consume. The syringe is huge!

Making Lemonade

There’s an American proverbial phrase,

When life gives you lemons, make lemonade

and it’s pretty applicable to those of us with CF and those of caring for those with CF. The past 2+ weeks have sucked, but me, Mom, and Dad have managed to sneak some fun in between therapies and medications.

Thanks to everyone who came by to check in on me, drop off toys, and offered to lend Mom and Dad a hand this past week. It hasn’t been easy, but then again, nothing in this world ever is…

Older Video, but I Learned Reverse

Quickly Outgrowing my John Deer Tractor

Twinkle Twinkle Little Star

Enjoy your July 4th holiday!

 

Where is Mama’s Cape?

It’s Been a While…

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Up to no good

Ugh, where do I start. I’ll start with the medical and then hit the fun I’ve had over the last couple months.

Medical – Sorry to Bore You

As anyone who has CF, cares for someone with CF, or is closely associated to someone with the awful disease knows…it is a roller coaster. Further complicating matters for me is the fact that I contracted Clostridium Difficile Colitis (c-diff). While I thought I was in the clear, I was beginning to feel that maybe the Metronidazole by mouth (Flagyl) only suppressed my symptoms (diarrhea, abdominal pains, etc.) and didn’t fully kill off the c-diff because some similar symptoms resurfaced and doctors were all set to start me out on Vancomycin as the next possible medication to try and kill off the c-diff.

Read the papers nowadays and you’ll constantly find articles warning us of superbugs and our reliance on antibiotics. There’s no doubt I’m going to be on more than my fair share of antibiotics, so Mom voiced her concern to my team of doctors at Children’s.

My team of doctors say the easy thing to do is treat. It’s harder not to treat. Ultimately treating is up to Mom and Dad, but hearing that didn’t make things easier on Mom and Dad to make a decision. And because Mom felt I picked up c-diff from Children’s she was losing more and more trust in the care they provided for me up to this point. The decision wasn’t an easy one, but collectively we elected to hold off on treatment and ride it out a little longer knowing I had already proven that I’m a tough kid. Mom also decided it was time to get a second opinion from Johns Hopkins. I’ll explain that visit and what we thought of it vs. Children’s in a later post for those caretakers out there who also wonder the same thing.

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Showing Dad viral videos on JHU’s network

While I can’t be for certain, we’re pretty sure I picked up parainfluenza while at Hopkins. Very shortly after coming home, I began fussing, crying, coughing, etc. So heavy doses of Tylenol and Motrin for about a week and a visit to Children’s for a throat culture. It must of been a bad strain because half of Team Jack ended up getting it (Dad, Bama, Aunt Rachel, and Hayden).

On to the Fun

We’ve been busy as beavers since Easter – first Nats game, bike rides, weddings, beach, fundraising walks, and visiting Dad’s home from growing up.

May 14 – Nationals vs. Marlins (First Game)

The game sort of stretched into my usual nap schedule so I didn’t make the entire game, but we had fun – 6 strong innings in baseball constitutes a quality start. It was a lot of fun watching the pitchers warm up in the bullpen.

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Nats beat the Marlins 6-4; maybe I’m a good luck charm

Comes at a Cost

Going to the Nats game came at a cost. Dad put me to work.

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Helping Dad in the garage

Apr 30/Jun 04 – Fundraising for cystic fibrosis

I can never thank people enough. It’s so much cooler when family and friends get out and participate in the fundraising walks, runs, bike rides, and hikes. So far this year, Team Jack  (Peden) has participated in four Great Strides walks – Alexandria, VA, St. Michaels, MD, and Annapolis, MD, and New Orleans, LA (sorry for the initial omission Seamus, Jared, Wakemans, Bonuras).

More information on future events can be found at CFF.org.

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Cousins JJ and Killian walking in support of me and 30,000 other Americans fighting

Snapchat

Mom and Dad recently discovered snapchat. You would think they took enough photos of me before. SMH

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#BreakingBad #WalterWhite

Jun 18 – Wedding

Uncle Seamus AKA Tamey married Jared in Alexandria, VA thanks to same sex marriage being legalized in the Commonwealth. So happy they did so I could participate as a ring bearer (well sort of) in the wedding. Had they gotten married in NOLA where they live, I might not have been able to be part of the wedding due in part to Mom and Dad not wanting to expose me to germs commonly found while flying.

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I don’t like when sleeves touch my hands

July 04 – Beach

We decided to head to Lewes for the fourth of July.

The salt air had me feeling good and wanting to go back very soon. I think if it weren’t for the traffic woes getting to and from there, we’d be there every weekend.

Surry, VA AKA “God’s Country”

One of Dad’s friends always refers to Texas as “God’s country” but that’s because he’s never been to Surry, where Dad grew up. Founded in 1652, it’s sort of amazing how its managed to remain underdeveloped and keep its rural charm. It wasn’t for a few years ago that the county finally installed its first stop light.

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Mowing the grass in the hot summer sun

We did so much. We went down to the James River, rode the lawn tractor, swam in backyard, fished, and even dropped in on the new winery that opened up across the street from my grandmother’s house.

Just like Lewes, I can’t wait to get back down south to see the family and spend time on the farm. Just wish they could figure out how to improve the flow of traffic on I-95.

Until next time…

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“Yeah, well that’s just my dream…Baseball needs more stars” — Bryce Harper

 

It’s Been a While…