CF Is Not Forever: If Your Going To Brag About Your Kids Abilities Be Prepared to Fail, (Or Atleast thats What Happened To Me)

I get myself into messes. I try to just live my life kindly and calmly and then all of a sudden I snap and BAM I make a brash remark and land myself in a pile of poop.

Case in point, I was sitting calmly discussing med changes with our pulmonologist and which antibiotic Orson the CF 5 year old (AKA the Kind of Brave) should take. She assumed that since he has a g-tube that liquid would be preferred, but I make this adamant brash remark about how “Oh no Orson can swallow pills he swallows pills all day long, definitely definitely make sure that he gets a pill form.” She says, “OK if you’re sure no problem. You’ll have to cut a pill in half for his dose but it will work.”

Orson getting his reconstituted antibiotic through

his g-tube.

We pick up the med and Orson goes to swallow the pill. It’s a different texture, size, shape, and taste from the 25 or more enzymes he swallows a day. He panics. He freaks out. There is lots of water gulping and freaking out and panicking. The tussle ends with his half melted antibiotic spat out in my hand and Orson in tears.

I then get my newly acquired much appreciated second hand “Silent Knight” pill crusher (hospital grade baby, hospital grade) and crush the remaining dose of his antibiotic and administer it through his g-tube. Super duper lucky that Orson is equipped with a trap door, per say, but super duper dumb of me to insist on a pill form when I could have easily accepted the chore of administering the liquid in the first place. But no brash Mom has to be a bragger about how Orson swallows pills like a champion creating a whole lot more work than necessary.

So now I’ve accepted my fate with twice a day dates with the Silent Knight (and 8 more syringes to wash and hopefully not fish out of the garbage disposal) when Orson hits another snag. His mental experience of trying to swallow his antibiotic and not being able to has been replaying over and over again in his mind. Before I know it he has full blown one hundred percent pill swallowing amnesia and fear. The boy who usually swallows literally 25 to 30 pills a day and has been doing it since he was two can no longer swallow any pills. Zero.

So know we are back to him trying, crying and slumping his head on the table in defeat. Then back to me encouraging, begging, pleading, yelling, banging my fist on the table ineffectively, pleading again, explaining, encouraging, and finally putting myself in time out in the pantry to say a prayer and try again.

He won’t take the enzymes on apple sauce like the baby does, he won’t open them into a cup and swallow the beads, and I’ve clogged the extension piece to the g-tube trying to get them through it with a mixture of applesauce and water. If he doesn’t somehow get enzymes into his gut with the food he eats he will become the mayor of diarrhea town complete with major stomach cramps and not to mention getting zero nutritional benefit from his food.

I can’t help but think that if I would have just agreed to the liquid antibiotic in the first place this mess would not exist. But the pantry prayer along with several others helped us to find a way to help Orson get his enzymes through the g-tube and eventually help him take them by mouth. He’s still not swallowing pills again, but at least he’s not having to get them through his g-tube every single time he eats.

This pill swallowing amnesia ordeal along with adding six new pills to Maelee’s daily regimen and an inhaled antibiotic in the same week, put me in a similar mental situation as Orson in regards to replaying a failure over and over again in your head until you’re useless to stop the negative flow.

My medicine bag for the

trip in full mess glory.

It also so happened to be we would be leaving on a super fun Sea World adventure trip with some friends in 48 hours. In my head I couldn’t help letting the fear/worry/and anxiety emotion overwhelm me as I tried to get us packed to go. Would I remember all the medicine and equipment? Would I look like a wacky pack crazy weirdo in front of my friends trying to pull it together and get the meds administered?

In the end the trip was a blast and the medicine was administered as properly as vacation allowed. Did my friends care that I was a wacky pack weirdo, nope. I think they knew that about me before we left, ha ha ha. I allowed my over anxiety about the medicine to block some other necessary preparations for the trip, like the all important beach day. But we did just find without all our cool beach gear that sat in our garage instead of being used on the trip. Oh and I had to borrow sun screen of all things because again I had this unnecessary mental block about failing with meds on the road.

My brash words and SNAP did eventually happen on the trip. Everyone was minding their own business vacationing it up when BAM I when nuts when the whole milk we packed ran out in the fridge at the beach house.

My tension avoiding husband and my weirdo pom pom kimono.

I told you I dress like a wierdo...and LOVE it!

I found myself in the same situation as the day we stood in the gate of our community pool and I lost it when my kids tried to go into the hot tub with some other kids. No one understand the dangers of a hot tub/Jacuzzi to the CF population until they’ve heard it explained by their pulmonologist. Once you’ve heard the explanation you do everything you can to avoid them (that’s why we call it the germ pool and my kids are the only ones not allowed to go in it, which they’ve accepted at this point 5 years later). The other pool moms had to look away in awkward tension as I lectured my kids on not going in the hot tub while their friends played happily in it. It was one of the first times I found myself becoming that one mom who creates awkward tension and is a wacky pack weirdo (don’t worry I’ve started to dress the part with pom pom trimmed summer kimonos all year round).

No but seriously I freaked out about the milk. It was so stupid of me but hey, pobody’s nerfect. I just needed the supped up dairy calories for my two girls (if Orson would drink milk without a battle I’d want it for him too of course) who weren’t eating as well as they do at home and of course for the babies bottle. Thank heavens my chivalrous tension avoiding husband was on the trip and gallantly rode his white horse to the store to get me more milk and half and half while I stewed in the tension mess I had made. The good news is my clouds cleared and my friends accepted me anyway as the wacky pack weirdo who wears pom pom trimmed summer kimonos all year round. Now we can all make jokes about Kamarah being like Gollum on Lord of the Rings only about whole milk and not a powerful magic ring.

I am grateful for the world that Heavenly Father has built for me and the people I am blessed to be surrounded by. I am grateful for a break from the grind and I am grateful to be grateful for the stockpile of medical necessities we have here at home, and a fridge full of milk. Milk, milk, milk…….my precious.