cf clinic visit

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!
huge relief.
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.

and cried.

a lot.

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?
haha, kidding.
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:

all. clear.

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.

momma always told me there’d be days like these. 

i did one of those mom moves this morning — the one where absolute chaos is going on around her and all senses are overstimulated and if there were outsiders, they would just see a swirling cloud of a loud mess,

but in the center, i just stood.

phone ringing. message after message, who do we owe more? but one call that particularly stands out is from the speciality pharmacy.

since our insurance changed in the beginning of the year, we haven’t been able to get M’s super expensive medicine. she nebulizes something called, pulmozyme, every evening. it’s a mucolytic agent, which thins her mucous to help her body to get rid of it easier in conjunction with her cpt or chest therapy. it comes refrigerated with reusable ice packs and all.
fancy.
so the stress of our dwindling monthly supply, as it nears the end with no reorder in sight, is mounting.

the machine we use daily to sterilize the nebulizer parts is humming away on the counter, and at this particular moment, unbeknownst to me, is leaking.
all over the counter and floor.

while paw patrol plays in the background, my son is begging me to check the email for the tracking of his pocket racers, but they are on backorder.
awesome.
he has now loudly proclaimed that i’m not paying any attention to him, that i do not love him and that i love M, more.

my email is pinging away with hot bookings from one of my agents. this is fabulous, but being that i can’t even go potty without two crying kids following me around, sending emails back to them is impossible.

my text messages are ringing, it’s my mom asking me about babysitting or gymnastics drop off, i can’t remember which, to be honest.

M is screaming horrible dramatics because she wants a popsicle or a “nee nee.” whatever she can get. both, to which i am adamantly saying “no.” this has brought her to the point of pulling down my yoga pants.

i want to pull my hair out and scream.
or bang it against a wall — i am not picky.

but i simply eat the last remains of a  bowl of warm, soggy cheerios and slowly, and purposely, enjoy each honey-laden, almondy bite. (dairy aversions call for almond milk)

all i hear is the plastic menchies spoon scraping against the elmo bowl. i even found a piece of a sweetened, delicious strawberry at the bottom.

i don’t hear the cries, the whines, the rings and dings. the dripping from the wabi sounds like a waterfall one would hear at a spa, while getting a luxurious massage. a tornado of activity and stress around me like a swirl and i was the eye of the storm. calm and cool.

who is this girl??

my mom just bought me a bracelet this week. i’ve been begging her, or C, for it. a mantra band, actually. i asked for “choose love” to be printed on it. a reminder for myself, that in these exact times of frustration, of trying my absolute hardest and still drowning in life’s stresses, to choose love.

ha! for what? for whom? geeze, i actually argued with my own brain in this moment. choose love for wanting to scream my head off?
choose love for wanting to run away?
choose love for hating this disease my child so unfairly has?

i know most of this craziness is typical mom life stuff.
i’m not special.
we all deal with this. though, maybe we all need to talk about it more instead of “pinterest-ing” our lives as such perfectness…but the added challenges with CF tick me off! they make me go off the handle.

tick tick…boom!

but before i let my emotions heighten, i  am reminded by my husband’s gentle text from the night before when i had a previous freak out,

“have you looked at your bracelet today?”

so i looked down and saw the words.

choose love.

choose. love. 

so i chose to love those soggy cheerios and i chose to love myself.

i ignored everything around me. i gave myself a gift of 60 seconds and focused on one thing.

the rest can wait.
i love these kids so much, that i won’t let this overwhelm me.

i am better than this.

then, like that;  i was snapped back to reality.

a huge puddle of the floor from the sterilizer and silence from the living room — our cable has been turned off from lack of payment.

and i still had crying children.

so i sunk down to the floor, to my knees, and hugged my kids.

…in the longest, loving hug i have ever given. and i got in return not one, but two amazing hugs that i have ever received.

the rest can wait.

 

holi-daze

it’s the most wonderful time of the year!

it’s magical.

the lights. the music. the wonder.

…some say, anyway.

i’ve never done exceptionally well this time of year, for many reasons.

one: i am a fantastic procrastinator, so there goes having anything actually completed so i may enjoy the time.

two, i want to do it all and make everyone happy, but, see above ^^^

thus, i spin and spin not making any sense of progress.

plus when your family lives in all sorts of places, the dinner table gets smaller, not larger.

though being surrounded by many people isn’t the cure for loneliness, either…

don’t let me fool you, if you see me on facebook, or at wegman’s chatting over the bananas, i might seem fine and dandy. but it’s easy to play that role.

honestly, i’ve always been pretty happy, that being not happy is just weird to me.

i’ve been writing for over a year now, and i thought that by doing so, it would help me with the isolation a caregiver feels. all that a mother feels.

but it hasn’t.

i thought by writing, i would have a better handle on my emotions.

these days, i am so angry with the day to day necessities of this stupid disease, i find myself loathing the very things that make her well.

for instance, between dropping little c off at school and senior c at work, it would have been great to grab a coffee and stop somewhere to let M play around.

but, instead, i needed to circle the airport, i mean the hospital’s overflowing parking garage to fight a losing battle for one measly space.

instead, i parked farther away, and then started the 10 minute (yes) debate in my brain on which would be best for M:
do we walk bundled up, outside in the cold air or in the warm but germ-y hospital.

i chose the former.

this was all for a trip to the hospital pharmacy since wegman’s doesn’t carry the latest prescription ordered by her team.

they added another medicine to our regimen. another 15 precious minutes.

i am angry at that!!
any time we have as a family, any time i have as a momma, most is spent doing something to take care of this disease.

i am angry at that.

as someone close to me has said a couple of times, “it’s just a way of life for you now.”

yes, indeed, so very true. but i’m not able to grasp onto that statement, yet, and say, “yes, let’s move on. okay! boot straps up, heave ho. emotions: off! quit yer b*tchin’, bek!”

nope. not there…
i am quite the contrary.

i am angry that my 20 month old baby girl knows to say “enzymes!” before she wants to eat.

i am angry that she knows how to swallow them.
amazed at the same time.
but angry she has been put into this situation at all and will be for the rest of her life.

i am angry our cf clinic knows us by our voices when we call.

i am angry little M still fights me something fierce doing her vest and nebs daily.

i am angry that once she starts a cold the incessant fears and worries creep sink deep into my heart and brain.

i am angry that her little dry cough she has had the last week has made her throw up more times than it should, due to her gagging on the extra mucous that’s in her little body.

i am angry that i need to be mindful we are not excluding little C from anything, as M’s ‘way of life’ progresses.

i am angry that even though shes doing really well, if i say i am angry to others, sometimes i am met with responses of “look on the bright side” or “there are kids much worse!”

i am angry this has made me so selfish.

but isn’t any mother when it comes to her child’s health?

i don’t want this for her. any of it.


 

but, i will smooth my blouse, put on my lip gloss and fluff my curly hair.
i will go through the motions required for this time of year, because i have children.
and they need me.
happy.
and hopefully i will actually feel the magic.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

picking myself up 

i ugly cried last week.

twice.

one was at my son’s preschool; the mommy -n- me thanksgiving day concert, craft and snack, and i forgot the oreos.

the oreos!

i went up to the other mothers in the parking lot, hoping one would say, “oh, honey, i forgot the cheese cubes, you’re not alone, it’s all good,” but no, instead, everyone just looked at me with eyes of sympathy.
as i dropped little c off at his classroom, his teacher greeted him and his reply was, in the lowest of tones, “i forgot the oreos.”

my heart broke. my little 5-year-old taking the stress of mommy forgetting the treat of the day. i fought back my tears for about 5 seconds and then openly lost it and did a deep gut wrenching ugly cry on a fellow mom’s shoulder.

well, at least losing it in front of moms i’ve known for 4 years at our local church nursery school isn’t as bad as if i would’ve lost it in front of complete strangers at the cf clinic’s parent information night.

oh, crap. but i did…

so, our local cystic fibrosis clinic set up a parent information night. they had a rep from great strides, the non for profit fundraising organization for CF, it was great to reconnect and start talking about the walk in may.
the respiratory therapist was there demo-ing different devices that help people with cf exercise their lungs.
the smart vest company was there with different sized vests and here, we found out that we have had the wrong size vest for baby girl!!

add a little “grr” as well, since maybe a too big of vest has been part of the struggle??
well, we were able to get some contact information and made a phone call the next day and had a smaller vest sent and oh my gosh, it’s already so much better.

focusing on the good.

but the main focus of the program was a 26-year-old professional woman, living with cf. she was there to speak to us parents of kids with cf.
she recounted her life, her late diagnosis (at age 12,) and the emotional effects which then led to physical exacerbations.

early 20’s, she rebelled, stopped her treatments and then ended up in the hospital multiple times.

that’s the thing with cf, they need to keep up with their treatments, even when they are well, or the progressiveness of this disease takes the lead.

this woman spoke proudly of her parents, as they have always been and still are her biggest supporters and her loudest advocates.

she talked of having depression and the emotional turmoil of this disease.

and this is where it cut me.

here, she has two amazing parents, fighting for her, fighting with her, cheering her on…

all things we do, here as a family, for little M.

but what if that isn’t good enough for her?

what if she needs more?

what if she still finds herself in the depths of despair, beyond hating the disease — with just plain apathy — no longer caring for herself?

this broke me in so many ways.

my husband’s shoulder was my immediate comfort as i uncontrollably sobbed, as softly as i could, before i rushed off to excuse myself.

as i wiped my tears away in the sterile hospital restroom, i took in deep breaths to calm myself.

i had to go back into that room, but so much of me wanted to leave.

leave it all.

that is not who we are.

this is pretend.

this isn’t our life.

our life is C and i paying a babysitter right now so we can eat chips and salsa with a frozen margarita. we are not at the hospital, hearing story after story of each hospital stay for the kids of these parents.

this is not us.

i can not relate to the new mom sitting across from me, crying about her 8 month old.

…oh, but it is.

i somehow managed to walk back into that room and take my place — hoping no one noticed my exit…except there were a few tissues that had been placed on my seat by one of m’s nurses…

~~~~~~~~~

as the past week has gone on and i’ve had time to reflect (and cry some more) i can only say that,

we will never stop being her front line.

we will never stop struggling with her treatments and medicine.

we will never stop questioning the doctors’ protocol.

we will never stop voicing our opinions regarding staffs’ procedures, offering our input for ease of future visits and care.

we will never stop raising awareness.

we will never stop fundraising for a cure.

and we will never stop doing our best to be better.

for little c. for little m.
never ever stop.

image

a pool of emotions…

“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.

for what?

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?

nope.

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.

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sick chicks at the doctors together

 

“it’s good for you”

these four words came from my 4-year-old. 

they have been life changing. basic words, but such an impact.

as i have previous journaled, it really hasn’t been easy — the daily struggle to get in her treatments but then there are also the multiple doctor appointments, the pharmacy refills, the phone calls for overdue medical bills, the insurance struggles, dealing with the nuances of the specialty medicine that only can be delivered via UPS since it needs refrigeration and the clearance if you won’t be home to accept the delivery, it seems the list for these CF things are growing. and of course there are the daily struggles tasks of life, as well.

one day, i was reading an article about how children feel, and the potential for them to feel left out, whose other sibling have special needs. 

i asked little c how he feels when we must do baby girl’s vest and other treatments each day. and since there is a lot of crying, from her and me, i figured he would say “sad” or even “angry” because he can’t hear the tv (the vest is so loud,) but he responded,

“i feel happy!” 

i was really surprised at him feeling happy, i was almost upset. was he happy because it’s torturous for his little sister? torturous for me??

i took a deep breath, apprehensive of his response, and i asked him why he felt happiness when we do her vest. his reply:


 

 

 

 

“because it’s good for her.”

 


and just like that, a shift happened and things started to change at vest time.
it has gotten a little less traumatic. we even sing a silly song.
we have our routine in the evening,

dinner, bath and “shakey-shake.”

and every time now, you hear one or all of us say, more than once, 

“it’s good for you.”

and she calms down. 

even if it’s just a bit, it is so helpful.

she understands. 

she knows.

the vest.

i’ve written before how this whole cf thing has been coming in layers for us.

we are okay for the most part, and then something happens.

we read an article on facts of the disease.

baby girl gets sick.

or i see a parent post the news of her child hospitalized, or worse…

 

i truly thought we were done with the realizations, though.

we hit another bump.

hurdle?

mountain.

and things have been so great, too!! i am never in a million years discounting that.

but even when things are going well, you need to be leveled out, i gather.

i have been working a lot. praise! the hours are crazie and it throws off the whole rhythm of the family — i came home two nights in a row and was greeted by baby girl at 5:30am. C had been up with her for hours during the night and then he would be off to work the next morning. yikes. the amazing part was when he said it was his honor. (i’m a lucky girl)

i haven’t been sleeping much, either, so that takes a toll on all of us because all of momma’s patience goes out the door and if anyone eats too loudly, all y’all gonna hear about it! #monstermommy

but we keep on, cause that’s what ya do.

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