I really wanted to write about these folks last, but I just
couldn’t wait. When we found out we were
headed out of the CICU and down to the TCC (Transitional Care Center) in
Cincinnati, we were told that we needed to hit the ground running for home
care. We had no idea how much of a pain
in the butt it’d be to 1) find a company that could support a child with a
trach & ventilator w/in our insurance network, and 2) find one of those
rare companies that met the 1st requirement and actually had
available nurses. YIKES! Literally, we spent three months working this
out and only came home with 40 of our 110 approved hours/week covered. It’d be almost five more months at home
before we’d be able to fill in most those precious nursing hours.
When our nurses in the TCC spoke with us about home health
hours, I told them how scared I was to have someone awake in my house around
the clock. Someone awake while you
slept. Someone in your home while you
were gone. That takes a ton of trust in
and of itself… let alone adding the stress of them caring for your very fragile
child and handling situations in a home setting that would send everyone else
to the ER - all without losing your mind. This
was one of our biggest hurdles in Ellie’s care.
So let’s dive into the story:
3/20/15 – After months of work and tireless training, weeks
of delays from insurance and home care companies, and meetings with a medical
supply provider, we were finally approved to go home with Ellie. We had already contacted our utility
companies to let them know we had a vent-dependent child in our home and we
made contingency plans for power outages.
We’d made calls to the Sheriff’s office and local emergency response
teams to make sure they knew our situation, as well. We had a plan in place if we needed to be
squaded out and had more medical equipment in our small home than exists in
some countries. We were ready-ish.
3/21/15 – After sleeping in my own bed for the first time in
four months, I was awake early to meet our 1st home health nurse –
Rae, from Highpoint Home Health. My
anxiety was in full force as she came through our door, looked down at Ellie,
and tried her best to have some sort of composure as I trained her. After about two hours, I was sobbing in the
kitchen because I just couldn’t let someone else do this. But I had to.
I needed to work – I needed to care for the boys – I needed a chance to
take a break. A while later, I told Rae
about this breakdown I had in the kitchen and found out that she walked through
our door, saw Ellie’s coloring and her oxygen saturation sitting around 70% and
thought, “these people should not be at home”. So on that first day, we each had our own private moments of panic. She kissed a picture of Ellie every night and prayed that she’d be okay
in the morning – then prayed all the way to work each day that Ellie would make
it through her shift. I’m telling ya,
those first few months at home were scary!
We’d go on to have Rae in our house for 5 days, then have 2
days off, then 12 straight. On her days
off, we’d have subs fill it. This was
hit and miss. We had one nurse that
never showed up when she was on the calendar… and one that I had to call the
company and say, “Never send that woman to my house again!” She was inappropriate on all levels and
should NEVER work in peds. Fortunately,
we had Rae. We loved Rae. She was always there for her shift, she
played games with the boys, she worked on sign language every day, and she was
overall a lovable person! Earlier this
year, as Ellie was getting closer to decannulation, Rae and I had many talks
about her future. In home health, when
you’re taking care of a vent-dependent child, it’s rare that the situation has
a happy ending. And after experiencing
many other tragedies, Rae wanted to get out of home care with a positive
experience – Ellie. So she moved on last
spring to another job. We miss her, for
sure!
I think this is my favorite picture of Ellie & Rae. Rae came to see Ellie in the hospital when Ellie was fighting a nasty infection. We have a lot more pics below.
After that first day, and as we got more and more
comfortable with having other people in our house around the clock, other
concerns came up that we didn’t think about before. If you have to yell at your kids – someone else
is in your house. If you fight with your
husband (or God forbid, have any intimacy at all) – someone else is in your
house. If you want to go out with
friends or family and do not want to leave Ellie at home, you’re bringing your
nurse along. They're there when your kids open gifts from Santa... as they do their egg hunt on Easter. They hold your child while you watch fireworks on the 4th of July and through the craziness of family get-togethers. You spend more time with nurses than with your spouse or any other family member. They become family. We’re used to this now –
but it was a big adjustment. There is no
walking through your house in a towel and if you don’t sleep fully clothed, you’ll
have to adjust for that before walking to the bathroom or answering that knock
on your bedroom door in the wee hours (don’t judge me, folks). As my friend, Julie, put it, "sooo... you can't walk around braless? Deal breaker." Haha!
About a month and a half later, we were finally able to hire another nursing company.
We now had a full time day shift nurse and a full time night shift nurse
– each working for a different company.
Gone were our days of taking turns laying on the floor/couch next to
Ellie as she slept. We were finally able
to sleep in our bed again. Danelle was
the only night nurse we’d ever had. She
came highly recommended from a family we knew and upon meeting her, I had no
doubts that she was the perfect, trustworthy person to have in that
position. There were nights when Ellie
would wait for Danelle by the back door, falling asleep there, even. If Ellie was awake when Danelle would come on
shift, Ellie would light up when she heard that door open. She’d clap and slide off my lap, throw her
hands in the air for Danelle to scoop her up.
Ellie loved Danelle (as did we).
I'm totally bummed that this is the only picture I have of Danelle & Ellie (although I love this shot)... I guess that's what happens when the shift is 10p-6a and I'm ready for bed. They're watching fireworks here. Sorry, Danelle.
It was at about this time that I started to realize that for
as much anxiety I had going into this arrangement, nurses had at least as much
on their end, too. They walk into very
questionable family situations and all levels of cleanliness. They care for families who have the full
spectrum of abilities and sometimes very little hope for a positive
future. Their job is hard, y’all. REALLY hard.
But they continue to care, they continue to love, they continue to push
forth despite all odds because they love what they do. This has been our experience, at least – we’ve
had an amazing experience with home care (aside from the few no-shows and impossible
personalities that I had to call and take off our schedule).
In August of 2015, we still had a part-time shift open on
our schedule and if we didn’t fill it soon, the state would likely strip those
hours away. We needed some evening help and we needed some weekend help. Ellie simply couldn't go out of the house for months on end, and because our two covered shifts covered bedtime and my work day, I would have to go grocery shopping in the middle of the night if I couldn't bring Ellie. I reached out to our care
manager with the Ohio Home Care Waiver and had her place an ad for private duty
nurses. This was especially scary. Private duty nurses do not have a supervisor
or company you call if things aren’t going well – I’d have to call our care
manager directly. I looked through
several resumes until I found one that looked promising. The nurse’s name was Olurin Olaleye. I
scheduled an interview and waited for her – Rae and I had prepared questions
for her. When a man walked up to my
door, I was a little shocked. He introduced
himself and said, you can call me David.
Whew! Okay. David is originally from Nigeria and has a
thick accent that was hard to muddle through on my end during the
interview. We were impressed,
nonetheless, and David was hired. Our
boys were fascinated with his accent and his deep, dark skin. They’ve asked many innocent (albeit uncomfortable)
questions over the years – usually relating to his skin color or asking him to
speak in his native tongue – which is amazing!
Ellie absolutely adores David, too.
She pats his head and dives into his arms. She plays soccer with him and pushes his
buttons with her ornery games. Finally,
we had filled 101 hours/week and we had a full staff – a regular staff.
David helping Ellie with her gingerbread house last year.
We’d
have this same staff of three nurses (yes, we know how incredibly lucky we are
in this regard) for about 20 months.
This is when Rae was headed out of home care and we’d be transitioning a
new nurse into her position. First,
there was one who came part time and was absolutely terrified of Ellie’s
complex needs. In all reality, Ellie is
MUCH less complex than she had been a few years ago, but this poor woman was
stressed to the max on a daily basis.
Keeping up with Ellie was not what she was used to. That nurse fell through and we’d wait a bit for
Rae to train a new nurse. When the new
nurse came to the door (earlier than Rae that day), I opened it and said, “Hello,
this is Ellie” as I showed her this two-year-old wrecking ball. Later that day, Rae said that this new nurse,
Melody, knew she was walking into a peds case, but had no idea how old the
patient was or that the patient had a trach.
Nice surprise, I’m sure!
So, late this spring, Melody started at our house.
Ellie didn’t take long to warm up to her. Melody works with Ellie on words, letters,
numbers, and colors, helps her with sign language, and helped her with
therapies until we were through Early Intervention. Melody is my sanity most days – poor Melody –
and she is absolutely amazing at making Ellie’s hair look adorable. Seriously, if you see Ellie on a weekday,
that cute hair is not a product of my talent – that’s all Melody! Ellie’s mornings are full of laughter
upstairs and she’s showing Melody just how sassy she can be some days. The boys adore Melody, too… as they have all
of our regular nurses.
Melody helped me (and by that I mean she did most of it) get
Ellie ready for her preschool Halloween parade.
This
journey is far from easy… having people in your home every day has challenges,
certainly, but there is much beauty on this road, too. We have had bumps along the way – near misses
and close calls – trips to the ER with a nurse in the back next to Ellie
keeping close tabs on her. Days when bad news pours out of my eyes and down my cheeks and these nurses try to put me back together. Trips to
countless clinic visits where the doctor extends a hand and says, “and you are?”
to my sidekick. And then there are the
looks in public I get when I’m out with the kids and David… yeah, shut it
public... assume whatever you want! While I look forward to the day
when we no longer need nurses in our house, I truly love all of these people
dearly and know that they’ve made an incredible impact on our lives. They make my job possible (like… my actual
job, but my parenting, too). They make
sure that Ellie gets the things she needs – attention, therapy, play, medical
care, personal care – each and every day (well, except Saturdays), and I’m
eternally grateful.
Don’t
for a second think that I’m forgetting our newest nurse… but you’re all already
super familiar with him. Yes, in July,
when Danelle left to pursue a career at Dayton Children’s (woot, woot - excited for her), Brandon
filled the shoes of our night nurse. He
went to work for the company that Danelle worked for (Maxim) and adjusted the
hours to work with his already busy schedule.
This meant that Brandon would now be doing more of the care than before
(because, of course, Danelle was doing a ton).
Ellie happens to love her time with Daddy each week, too. This also freed us up to stay out later some
nights – since we didn’t have to be back home before 10pm. And let’s be honest – I no longer have to
worry that someone is going to knock on my bedroom door at 3am and I’ll answer
in my undies and a t-shirt. That’s a
win, right?
How can she not love her newest nurse?
Thank
you for sticking with these long posts… I’m hoping that Ellie doesn’t have as
many caregivers as she gets older, and I know that when I look back on these 12
Days of Christmas posts, I’ll again remember exactly how big this army is that
cares for her.
Let’s
not forget the other staff that keeps this all running:
From
High Point: Tiffany, Sarah, Carol, Kathy (this is who Rae and Melody work(ed) for)
From
Maxim: Janet, Linda, Charles, Jen, Jennifer (this is who Danelle and Brandon work(ed) for)
Ohio
Home Care Waiver: we’ve had several Care Managers through the years, but Jolene
is taking care of us now and she’s fabulous.
Our
pediatrician and specialists also work closely with home care to make sure we have
all that we need. Before we’ve even
touched our DME, we’re already talking about at least fifteen people involved
in this chunk of our care team. And they all need updates on any and all changes in Ellie's care/status. That alone make discharge planning rough on me.
Rae, Lance, and Ellie on the tablet at our old house
Ellie had just learned to sit. Rae is admiring her progress!
David and Ellie cuddling
Rae & Ellie at a Halloween party last year
Melody and Ellie after lunch this summer
David taking Ellie on a 4-wheeler ride
David came to Children's one day to feed Ellie lunch and give me a break
Melody came, too... giving me some much-needed company.
A two-year old is much harder to handle in a cage/crib than a baby.
Ellie is learning how to use all of this thanks to her nurses.
Checking out David's stethoscope
Daddy doing Ellie's bath, care, and hair on his first week on the schedule - of course this was NOT his 1st time giving her a bath or drying her hair... it was just too cute not to photograph!
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