y’all hear that??
it’s a big sigh coming from us over here — it’s been a good news sort of a week or two, for a few reasons…most of which i can reveal! 😉
i know i’ve been in the doldrums the last few posts, so this is a welcome change for us and i’m sure for you as the reader, too.
first, a big high five to C for sorting out our insurances and getting M’s pulmozyme on queue for shipment!
i have been so blessed to be working, not only at the Q, but with other acting/modeling opportunities, and there might be some possible new ventures planned — more on that in the future!
but most importantly, a few weeks ago we had M’s cf clinic appointment.
as a parent, you are uneasy and on edge a few days before these visits. they are always filled with such mixed emotions.
sleep the night before is interrupted and quite fitful.
“will tomorrow be the day the dr. shows concern for her growth?”
“will tomorrow be the day they say her weight gain is poor again? so much that we must increase her enzymes…?”
“will tomorrow be the day her oxygen levels are down?”
“will tomorrow be the day she shows signs of a bacterial infection in her lungs?”
you have apprehension for the few hours you will spend in a teeny tiny room with an adventurous toddler.
you dread all of the poking and prodding that she will endure.
i’ve actually been hesitant to write about our last visit until we received all of her throat culture results. i was praying to be able to give a full, positive report.
9 am: we arrive at the hospital, with big brother joining us on that day. (a definite added stress, but he was amazing)
we walk down the long corridor, adorned with pictures painted by the children who are staying in the hospital.
upon arrival, we are quickly ushered into an exam room, our home for the next 90 minutes.
the pediatric nurse comes in, asks us the usual questions regarding M’s medicines – she takes a lot for such a little babe.
they weigh her and measure her length.
then they strap a pulse oximeter onto her toe or finger, which ever she will tolerate more, and this will read her oxygen levels. it doesn’t get a read as fast as you would would like it too, so as the parent, you find yourself going crazy over hearing the beeps going up, up, up and then down, up, down, down, up, down, down, finally up, up, up, to the magical number of 100%! sometimes it hovers in the low 90’s and that’s not good! the nurse reapplies it, and tries again. after what feels like 5 minutes, you realize you haven’t breathed.
9:20 am: we meet with the nutritionist. she reviews M’s height to weight ratio and her BMI. she also calculates how much weight M has been gaining or losing per day. we go through a daily food log, describing how much and what types of food baby girl eats. this is also where we get extra detailed describing her stools. it becomes typical speak and as a mom to a pancreatic insufficient babe, i no longer cringe. plus, using descriptive phrases like, “warm peanut butter” or “stringy and mucousy” or “a beautiful, fun-sized little nugget” are welcomed and quite appreciated. 🙂
cf causes the body to produce extra mucus. mainly in their lungs and digestive tracks. this mucus prevents the organs from properly functioning. M is what they call, “pancreatic insufficient,” her pancreas ducts are blocked and the digestive enzymes are unable to be produced. this means her body is not getting the proper nutrients that it needs to grow. so she swallows her own enzymes! 2-3 with each meal, 1-2 with snacks. as the disease progresses, she is at risk for cystic fibrosis related diabetes or CFRD.
in terms of her lungs, there’s extra mucous there, too. so whenever she gets a simple cold or virus, it is detrimental to her health. that extra mucous then grabs onto other bacteria, bacteria yours or my body can fight off, but not someone with CF. it’s a perfect breeding ground for infections and sicknesses. a simple cold can turn into months of extra treatments, medications and possibly hospitalizations for people like M.
9:45 am: the respiratory therapist comes in to speak with us regarding her vest, CPT, and nebulizers. i still feel like a novice when it comes to using the different nebulizers and the whole process of cleaning and sterilizing them. some go in the sterilizing machine. some don’t. though every week, you are to do a cold vinegar and water bath. (yep, just learned that one!) only use distilled water in your sterilizer. and don’t melt the spacer.
seriously. whatever you do, don’t melt the spacer!
like i totally did.
spacers are these plastic devices that aid in giving your baby her inhaled medicines.
and they cost $45!!! NOT covered under any insurance program we are privy to.
10 am: the pulmonologist arrives. i must say, again and again, that we are so blessed with such a knowledgeable AND caring individual.
he sits down and speaks to us.
talks with us.
about our questions. our concerns.
he’s so willing and open to hear from us. and to be honest, this has made me tear up as i type. here i sit and write, crying about our pulmonologist and his caring demeanor.
but i realize, it has been a very important constant that has helped us through this uncertain, and flat out, scary time of the whole 21 months of M’s little life.
the same life i thought that my only concerns were supposed to be overflowing laundry, sleepless nights and peanut butter smeared everywhere…
Dr. M does a careful and thorough exam on baby M, and the best news was that all sounded clear in her lungs. thank the Lord.
11 am: the social worker stops in to check in on us. i know we appear to have it all together, though i think that i probably should not ever direct her to this blog, huh?
but this is the time for her to see how we are doing emotionally. she has a resident trailing with her on this day, and i must admit, i always am skeptical of residents, but this one, jennifer, found two superhero capes for both C and M and it brought the biggest smiles to the whole room.
11:15 am our two favorite nurses come in! we love J & T, but we kind of really hate what they need to do…
this is where M’s throat culture happens. it’s two seconds, but the build up, the pinning M down is what is so difficult. it’s like when you vaccinate your baby, you understand that minute of pain for your child is worth far more than the weeks (or more) of pain (or worse) developed from contracting the actual disease, so in the moment that your child is screaming from her shot, you can rationalize it all.
but for a simple test that requires the nurses to literally pin your child down to basically gag her with a humongous, extra long q-tip to scrape the back of her throat to then sit in a petri dish and see what and how many bacteria are forming in her…it’s hard to rationalize.
it just is.
i know this will help M if she is culturing something, and from there we can get her the proper antibiotic. in the past, she’s cultured some colonies of mold, and for almost a year now, MRSA.
but it doesn’t break my heart any less each time she needs a throat culture done, which is every visit that happens every 3 months.
throat cultures are totally why our clinic had an icee machine installed! #rewards
so by 11:30 am, M is nursing on me, mostly for comfort, in between sips of her cherry ice. meanwhile, little C is busy playing with his new toy he received for being an AWESOME big brother. the whole team was so impressed to hear how he helps with airway clearance, breathing treatments and with administering enzymes.
we leave the office with a good report, new toys and of course, their superhero capes.
and last week, finally, we received her throat culture results:
we were expecting to see that the MRSA was still present. MRSA is a bacterium resistant to most antibiotics and it’s one of the more concerning bacteria for one with CF to culture, as it could affect survival.
can you tell we are so grateful to hear it’s been cleared for her!?!
between little C’s helpfulness and M doing so well, we have two spectacular kids.
they are my superheroes.