“does she look pale to you?” i pleadingly ask my mom and then my husband, super late, once he got home from work.
it’s 3 am, and i’m still holding her because she looks pale and i’m worried.
flashback to the past two months and things have been pretty stellar. C and i are both doing well at our jobs, more opportunities and more responsibilities offered. the dreadful vest has finally reached a point where it’s not so dreadful, but just part of our day.
now her cries startle me this hot summer evening, where in between her screams, i only hear the hum of the air conditioner. now as her cries are shrill, and with each piercing scream, her knees come up to her chin.
just another night in the depths of GI issues for a person with cf.
if she and i hadn’t both fallen asleep, i was seconds away from taking her to the emergency room.
i don’t know, but my level of helplessness was at an all time high. i just wanted to be doing something to help her. to ease her pain.
the next day, i make the multiple phone calls to her team. it was decided we needed to test her stool. this is where things got crappy. ha, yes pun intended.
through a bunch of errors starting with never receiving an email of the prescription to not having the proper vessels to obtain the stool sample in to actually getting it scraped into a container, since it was so runny — getting results were more than difficult.
and it took DAYS.
8 of them to be exact, until we were sitting on the beach, and i get the notification on my phone that M does indeed have an infection and she must be started on an antibiotic right away.
remember the part i said we were on a beach?
so no local pharmacy at the ready, with our insurance information on file.
and who really takes her insurance information to the beach with her? i’m sure there is someone, but i am not she.
so, hey, we will call our normal pharmacy at the gigantic chain grocery store and ask them to send our info along to the tiny beach town pharmacy.
denied. they won’t send it.
oh, why not “just” (that’s always my favorite, “just go there, or just do that”) go to a CVS?
we need a compounding pharmacy, which takes certain medicines and make them into a suspension, or liquid form.
in my efforts to try to alleviate some stress and aggravation, as well as travel time up and down long beach island, i ask if we can give her the antibiotic in pill form, she already swallows her enzymes like a grown up, so why not?
so, C leaves the beach early, and ventures off to pick up the chalky white pills.
pasty, foul-tasting little white pills that a 1-year-old will NOT swallow by any means.
how about crushed up into a powder and mixed with applesauce, yogurt, oatmeal or pudding?
no, no, no and no.
meanwhile, her appetite has decreased so much, she was barely eating. maybe one tiny nibble of bacon for the day.
trying to trick her into taking these pills in food was futile.
we were desperate. she was still in pain, and not eating. it’s already a hardship to get people with cf to maintain weight and nutrition since their bodies do not absorb the proper vitamins and nutrients. this is why she takes enzymes with any food.
maintaining proper weight and nutrition is vital for growth, brain and bone development to name just a few, as well as fighting off sicknesses.
the next day, C left breakfast to find a pharmacy that would take these same pills and turn them into a liquid, since insurance would not cover a whole new prescription.
amazingly enough, he found a place (thank you Kapler’s Pharmacy!!!) and was back after a few hours with the liquid medicine and some syringes.
pinning her down and making sure she wouldn’t spit and throw it up, was the new battle.
that was a month ago, and we are still dealing with this bacterial infection and on our second dose of the wretched tasting medicine.
now she has an added chest cold for bonus!
our fears are heightened, because anyone with cf has extra mucous in her lungs and other organs. even if she catches a virus, that extra mucous builds up and can “catch” other bacteria that a non-cf body can easily ward off. it’s a perfect breeding ground for big problems. this is why it’s *so* important for us, and for others, to be extra diligent with hand washing, staying up to date on vaccines, and even staying away when ill.
meanwhile, we are always grateful for the treatments that are available to us and we will keep doing what we need to do to keep her healthy and happy.
we’ve got you, baby girl.