It’s pouring rain and the time of day when everyone should
have their headlights on but it isn’t all the way dark yet. As I turn onto the
202 to start the 23 mile drive to the hospital I think surely this rain is
going to stop. But the whole way to the hospital its pouring rain, hard big
drops too, very very uncommon for where we live.
My nine year old is in the back seat wound tighter than a
spring awaiting her first admittance to the hospital that she can remember. She
has had low lung function for the past few months and has sounded “coarse” and “wheezy”
so the pulmonologist at our CF clinic has prescribed hospital IV’s and
observation. I’m trying to stay calm but the rain and the freeway and car that
I am not used to driving in combo with the fast approaching darkness has me noticeable
tense. Maelee the nine year old suggests we say a prayer and I agree and that
she should say it. We just said one with Dad and the boys and baby Ruby before
we left but why not it can only help to say another. She finishes the prayer
and is quiet for just a minute then she says, “Mom I think we will be doing a
lot of praying these next few days.”
She’s right! A few hours earlier we had just got the cast
for our one year old’s broken arm and literally while I was in the casting
appointment the “beds” department of the hospital called to say that Maelee’s
bed was ready. So we hurry and pack our bags and wait for Dad to come home to
give her a Priesthood blessing with a friend and neighbors help and we fly off
in the most gas friendly car we have to the hospital.
Everything is new to Maelee. The bed is super cool and
moves. Her hospital room is big enough for two people therefore has two
televisions and she is super pumped because she thinks she may be able to find
a way to watch both of them at once.
Then the nurses come to take her to the “procedure room.”
They have a separate room for the “procedures” so the kids have nothing bad
happen in the rooms they are staying in. Maelee is incredibly worried for the
IV placement. Desperately hoping to avoid 8 nurses laying on top of Maelee
while she screams and thrashes I pull out all my Mom ideas. “Hey Maelee want to
shop for ankle boots on my phone?” It works. She is so distracted shopping for
the boots she has already asked to get for Christmas that the two nurses get
the IV in and she’s ready to roll. They warn her though that in the morning the
IV team will put a longer lasting IV in called a PICC line. They explain it to
her as best they can, something about a long tube being inside of her arm that
they put medicine in. Unbeknownst to myself and the nurses Maelee’s
interpretation of getting a PICC line means they are going to have to slice
open her arm to put the tube in.
After finally settling down after a ham and cheese lunchable
and oreo and milk dinner from the vending machine since the cafeteria was
closed she finally falls asleep 4 hours past her bedtime.
Maelee dreamt of another girl in a hospital bed beside her.
The other girl raised up in her hospital bed to show that she had a giant hole
in her stomach. Maelee looked around her room in the dream after seeing this
shocking hole in the girl next to her and started getting attacked by doctors
and nurses with needles.
Right about that time a PCT came in to poke Maelee’s finger
for a blood sugar check. It was 2am. Maelee understandably lost it. I did what
I could to help the nurses get the blood and eventually after lots of sadness
Maelee was able to again fall asleep mumbling even as she was sleeping about
ripping out her IV and going home between sobs about a PICC line. She still
thinks her arm is getting sliced open the next day.
After a late in the afternoon PICC line placement (under
full anesthesia due to the fight she gave the nurses the night before) things
began to fall into line better. Then it just became a waiting and talking game.
The mornings especially brought lots of talking to a pulmonologist, a team of 5
pediatricians, and right behind them a team of 5 residents, respiratory
therapist, her CPT, her nurse several times, cleaning people, food deliveries.
A typical grand central station with no privacy and with large amounts of
interruption. Throughout her 6 night stay a sputum culture had been taken that
first night and was busy growing in a lab deep in the depths of the hospital basement
(we’ve heard its pretty spooky down there for reals). This culture and more
testing, another lung function test, and finally a sinus and chest scan would
determine if Maelee could go home to finish her IV treatment and for how long.
So she learned a ton about what it means to have CF and that
she was been extremely blessed to not to have had to go in for something like
this sooner. She goes from feeling super upbeat to feeling like she did
something wrong and its her “fault” for being in the hospital. Frank and I and
my Mom all worked together to take care of the kids at home and Maelee in the
hospital. Someone always slept overnight with her and someone was always there
with her during the day. The only breaks she had in one of us not being in
there with her was some afternoons I or Frank would drive home to switch the
car out for the other person since one of our cars gets considerably better gas
mileage than the other. It was exhausting but not a scary trip (besides
Maelee’s horrible dream that first night) to the hospital. It was refreshing to
have a “big kid” in the hospital and not a little baby, just because it was
easier to communicate and understand each other and to endure the experience as
a nine year old versus a tiny baby you can’t bear to turn away from for a
second.
She had a couple of mom friends bring their kids to come
visit her. One night she had two girlfriends and one of their mom’s eat dinner with
her. She LOVED that. Another night she had some girlfriends come and do crafts
and play games with her. She even had her carpool friends come and before long
they were all playing hide and seek. Its surprising how many places you can
find to hide in a hospital room.
It was only six nights which is a very short CF hospital stay
so she/we received lots of blessings on this visit. She came home with the PICC
line and we will have several check ups and check ins as we navigate the next
couple of weeks of four vests a day (2 hours a day) and extra meds and doing
the IV’s at home in tandem with Orson’s g-tube feeds at night it may get a
little hairy but the first night went well.
1:00am – Orson’s G-tube feed finishes and he gets unhooked
and taken to the bathroom
4:00am – Maelee has another IV
6:30am – 1st vest and breathing treatments
12:00pm – IV and 2nd vest treatment
3:00pm – 3rd vest treatment and breathing
treatments
7:00pm – 4th vest and Orson gest set up and
hooked up for his g-tube feed
8:00pm to 9:30pm - Night IV
I had some misinformation in my head about IV’s and once
that was cleared up we were taught from a very skilled home IV nurse on how to
do them for Maelee and it’s manageable. Maelee will be missing school while she
has the PICC and while she needs to be doing these extra vest treatments, to
both protect the PICC from harm and from germs, and to provide ease of
treatments.
The message of all the care providers across the board
during this experience was, get used to this, its only the beginning. I feel
less angry now when I hear that. I still want to tell everyone who says it, “maybe
you don’t know us, but that isn’t something we are going to accept as normal.”
I don’t tell them that but I think it and feel it. My heart still is shocked
when my babies are in the medical clink.
What kills me though after
leaving the hospital and having the separation of family that we had only a
tiny taste of, is the other kids who didn’t get to leave and families who are
still in a state of constant pulling as they manage the home front and the
hospital front. I wish I could help them. I wish I could say, hey I’m not a
nurse but I am a mom so let me sit with your baby for a few minutes while you
go get some ice downstairs. Or walk with them down the halls during the many
transports to the different places your kid needs wheeled to. Or give them a
pep talk as they walk from the car into the hospital.
One friend we know personally
has been at PCH for three months. Our 6 six night stay dealing with what we
have been assured will become a multiple time a year event for us indefinitely,
is nothing compared to sitting there with your nerves on complete edge and your
heart shredded as you wait and watch your child receive and respond to
medication and procedures for over 90 days. She has been there with her son who
is fighting through Leukemia during the day and then her husband comes to be
with him at night. I wish I knew exactly what she needed to help her feel a
small bit or normalcy or comfort while she is in the hospital room with her
son. One tiny idea that I got was that she would benefit greatly from her own
laptop. Her husband uses their only laptop for work purposes so he needs to
have it with him. If she had one to use while she was at the hospital with her
son it would provide a greater source or freedom for her mentally to wade
through her personal sea of worry and waiting. She could more easily journal,
make photo books for her family and son to document this life journey they are
on. So my new goal is to try to as quickly as possible find a way to get this
friend a new laptop. I’m formulating a plan and unlike Mike Wasowski on
Monsters Inc, I will not be “using mainly spoons” but plan on making some phone
calls and doing some research to see if I can find a company or organization who
can donate a laptop to this mother.
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| This is ham and cheese lunchable vending machine night, before the nightmare |
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| Right before she went under for the PICC placement |
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| The Wall of Love |
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| First scan experience, I was told but never realized that this machine uses 100 times the amount of radiation as an x-ray machine so that is why Maelee won't be getting these done very often per our doc |
My nephew has CF. My heart goes out to CF families. You guys are tough warriors.
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