“i know this must be difficult for you, but it really is the best thing for her.”

i still hadn’t responded to the doctor.

partly in the hopes that, maybe in my 60 seconds of silence, he would’ve changed his mind and said, “you know what, based on your shock and full on terror, i rescind my decision. she’ll get better at home after all. have a great day!”

and partly because i just couldn’t form the words…

i’ve been the one who has been most realistic with this disease.

i’ve been the one who has outwardly cried the most.

i’ve been the one who has worried the most…

i’ve been like this ever since the day we received the phone call saying her newborn screen showed the cf gene.

then we received her blood work confirming both DF508/5T deletions.

then we received the news she was pancreatic insufficient and needs to take pills every time she eats for the rest of her life…

i’ve been the realistic one, all the way.

C, on the other hand, and some close family members, had other opinions. along the thoughts that this was just a formality for insurance companies.

that she didn’t really have CF.

or, God will heal her.

or M’s cf won’t be as severe as what i had been reading about…

but even with me being the most realistic,

i  was stunned by this news of her being hospitalized.

i was shocked.

and downright flipping angry.

what the heck have i done wrong now?!

but it’s not about me.

this is about her.

and, whether we like it or not, it’s about this stupid disease.

we arrived at the hospital after packing only a few things because we (wrongly) thought for sure this wasn’t really happening and we would be home by the weekend.

i remember staring and being quite solemn at the check in desk when i received my bright blue “visitor” tag and M only got a sticker that said “terrific” on it and it smelled like a strawberry.

she wasn’t a visitor.

i remember being a zombie while M was happy to see the big fish tank in the hallway of the children’s hospital.

i thought of those fish, swimming back and forth in that beautiful tank, and felt utter sadness and complete despair as M watched in amazement, having no clue on what we were about to embark.

and then walking into her room and seeing the machines, her jail-like crib and the bright neon green signs everywhere stating we were on reverse isolation.

but i didn’t cry.

not until i saw one of M’s regular CF nurses, T.

she was gowned up, came right over and gave me the biggest hug. this was the first of two times i would cry my eyes out on her.

it was such a relief to see a familiar face in such a sterile, strange, depressing, lonely and heartbreaking place.

next thing, there was a resident gowning up and knocking on the door. i had just started nursing M and was going to meekly and uncomfortably let him in, but T politely and authoritatively said to the resident; “please come back in 15 minutes, she just started nursing” and while this resident heaved a big sigh since he had just did the whole rigmarole of putting on a gown, gloves and a mask, he reluctantly obliged.

T turned to my wide eyes and said, “that’s why I’m here, to show you it’s ok to speak up for yourselves. there will be lots of people coming in, you’ll need to know when it’s ok to send them away.

and then she stayed with me for the next 3 hours.

most importantly, she stayed during the time the nurses came for M’s IV.

it was a parade of nurses and child-life specialists (they basically blew bubbles and held an iPad) carrying M down to the tiniest, most sterile and un-kid friendly room, ever.

M is crying and has a pained look of confusion on her face.

it will be forever imprinted on my brain.

she really does a super job holding still while they begin to insert her IV needle and i’m torn between staying back to let the nurses do their job and rushing over, whisking M away and saying,

“oh, Dr M told us to stay home, we actually shouldn’t be here! bye!”

between my two realities happening before my eyes, they get the IV inserted. i only know this because of the sing-song chant that they were done and how well M did combined with the amount of blood i saw everywhere. almost too much blood for a tiny IV into a little girl?!

i’m a mom, though. so any blood and tears from her child is too much.

i look over to T and with a knowing look, she reassures me to go comfort M, that my motherly insicnt was spot on, go to my baby girl.

once back in the room, i learn the ways of the hospital.

it sure ain’t the hilton.

due to M’s CF, she can’t go into the children’s playroom, nor can she play with other children on the floor. if she is to leave the room she must wear a face mask. any medical professional must gown up before he or she comes in contact with her. this is all to protect M from any germs they have. knowing it’s for M’s protection helps make it somewhat easier, but we were basically confined to her tiny room for a week.

i was also to learn that every time M was to eat, snack and nurse, i must ring the nurse for M’s enzymes — the same enzymes baby girl has been swallowing for a year on her own — now we were to ring and wait for a nurse, explain our needs and then…wait for her or him to come back with these needed enzymes.

sure thing, let me explain waiting to eat or waiting to have instant comfort through nursing to my 2 year old. she’ll totally understand.

ha ha. no way.

every time i thought i had a minute to catch my breath, whether it was to look at a text message or go potty for goodness sakes, someone was coming in for vitals, antibiotic administering or her airway clearance.
it quickly became a “hamster wheel.”

no end and no beginning.

6 am was the start of rounds and the attending physician would come in surrounded by his 15 fellowship students.

i honestly didn’t know who to look at except the attending was definitely the most cocky, confident one speaking.

next up, the respiratory therapist came in to administer nebulizers and perform airway clearance.

approx 10 min of albutorol

and then 15 min of hypertonic saline.

followed by 20 min of the vest.

and being with how non-compliant M has been with these treatments, add on another hour of struggle to the hour of treatment.

it’s close to 10 am and the floor nurse is strong arming me that we are behind with vitals, which is another struggle in itself as miss M does not like the thermometer poked into her underarm — but who would?!

i haven’t had a second to give her breakfast and now it’s time to order lunch…

meanwhile the pulmonologist has been observing us for the last hour.

he was able to get a real upclose view of the struggle.

the respiratory therapist is back, is it really 1 pm already?

more nurses.

more treatments.

more tears from M.

i have been saying, a million times by now,

“its good for you baby, you’ve got this”

though how much of my words did she really hear?

she was shut down. refusing all and every treatment.

 

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