It never seemed like this day would come… when I could write
a post about the real possibility of going home. Now, this is a dangerous topic for those who
know all too well how discharge planning goes.
This is no fault of the discharge planner, of course… there are just so
many variables to getting home in some cases.
In ours, it’s that we have to finalize home nursing before we can
leave. We have to have at least one
shift covered before they can reasonably send us on our way. To date, this is not settled. We have a nurse lined up and we have a
company ready to roll, but that company has to verify that our nurse meets the
qualifications needed for the job and our nurse has to complete some training
and such before officially being assigned our case. Once we officially have someone assigned to
our case, the nursing company can finally submit the case to insurance for
pre-certification. And once we’re finally
through that hoop, insurance will review the case and come back to say how many
hours they will cover. Sooo… the
likelihood of all that happening before we’re supposed to go home on Thursday
is pretty slim, but we’re holding out hope, of course.
Home is still a little scary for us. As of 3pm yesterday, we were officially be
done with our training – yahoo! We’ll be
meeting with the medical supply company for training on the equipment they’re
sending us home with, but that shouldn’t be too strenuous. We are sure ready to get this sweet girl home
and start that next chapter in our family.
Going home is going to be much different this time, though. Getting out of the house with all of Ellie’s
stuff is quite a production – but it’s doable.
We certainly do not want to make her a hermit, but we also have to be
reasonable with what is safe for her.
You see, if Brandon or I or our boys catch a cold, we bum around the
house for a few days, maybe get some medicine, and we’re fine after some
R&R. If Ellie catches a cold (or
gasp, the flu), we’re back in the hospital until she’s better. What’s more, if we get close to a surgery
date and Ellie gets sick, surgery is postponed for 4-6 weeks. Eeek.
That sucks.
This was us getting Ellie portable on her vent earlier. This is a sit & stand stroller. The basket underneath is full, too. As you can see, there's a lot that comes with Ellie when she moves.
So don’t be surprised if you see us and we have a plastic
weather cover over Ellie’s car seat. We
have to protect her from as many coughs and sneezes as possible. Yes, she may look like a baby in a bubble,
but we don’t really have options, as far as that goes. We won’t take her out as much as we did
before, but we do want to go to church occasionally and by golly, it’d be
amazing if we could see family on Easter (since Thanksgiving and Christmas were
both spent in the hospital). But know
that we will still have to be extra cautious with her. We will ask that you do not touch Ellie
without clean hands… and that means we’ll always have hand sanitizer ready (and
we may force it on you… sorry). If you
come to our house (we’d love to have visitors), we’ll ask that shoes come off
at the door and that hand sanitizer is used immediately. If you bring someone to our house that is
sick, we may ask you to leave. This is
nothing against you… back to the whole Ellie getting sick and being admitted
thing. If you WERE sick a few days ago
but are healthy now, or if someone else in your house is sick, we may just have
you wear a mask in our house. Please
don’t be offended by this. And trust us,
we have LOTS of masks. If you come to
our house and see one of us in a mask… it’s probably because we feel a little
under the weather ourselves.
We will likely be more cautious of kiddos around Ellie than
we were in the past. Even if they’re not
sick, they are constantly exposed to other sick kids every day. We can’t do anything about her being exposed
to her brothers, but from having kids, we know what kids’ hand hygiene looks
like most of the time. Don’t get it
twisted, we squirt our own boys with hand sanitizer all the time now (they call
it sanzi-tizer). And if they get a
little raspy, you can bet your but t that they’ll be masked in our house,
too. So don’t be surprised if we’re a
little more reserved about kids holding or touching Ellie – we may have them
wash their hands and then douse them with hand sanitizer, too.
We absolutely cannot bring Ellie into a place where other
people are smoking – so if anyone smokes in your house, please know that we simply
cannot go into that house with her.
We’re not judging anyone’s decision here; we’ve just been told that she
absolutely cannot be exposed to second-hand smoke. Smoking also reminds me that we will have
oxygen in our house now. We’ve never let
anyone smoke in our house, but now we will not be able to have any open flames
at all – so our space heater is being evicted and our candles will just collect
dust for a while.
One of my biggest obstacles will be staying on top of things
being sterilized daily. I know for some
of you this is just your standard process.
Well, it’s not for me. I’ve never
been a germaphobe before and we do not use Lysol in our house. We have cleaners, of course, but they’re natural
and mild. I was not going to have harsh
chemicals in my house before. Now, it’s
a toss-up between using Lysol and accepting the possible side effects, or
risking exposure to something funky because our “green” cleaners weren’t as
potent as we needed them to be. In this
case, Lysol wins for us. But it’s a change
of pace for me to wipe down our bathroom and doorknobs and other surfaces with
Lysol daily. It’s a change to steam mop
all of the floors daily. I’m the kind of
dork who went onto Pinterest to find cleaning tips to make this transition a
little easier – don’t judge me… there are days when I spend entirely too much
time on the internet. On the other hand,
a consistently clean house is kind of exciting.
For the neat freaks out there, you have no idea how panicked you become
when your house is far from perfect and someone pulls in your driveway. Ha!
Here’s hoping I do not feel that way again.
Long story short: we
hope to get home on Thursday this week.
If nursing doesn’t get squared away, it’ll be later. Did I already tell you that Ellie’s next heart
cath is March 18th? I’m
hoping to get home for a few weeks before then.
When you come to our house or see us out, we’ll be crazy germaphobes and
we’ll likely have our baby in a bubble.
But, this is our life right now and we’re just trying to do what’s in
Ellie’s best interest here… I hope that does not offend you.
Thank you again for your endless support. We are so excited to start this new journey
with our family… and it’s crazy that going home qualifies as a journey for
us. Whoda thunk, right? Here are more recent pictures for your enjoyment. There aren't any of the boys because we haven't been able to have them down here while we've crammed training into our last few weekends (and yes, that's killing us).
This picture shows you just how big Ellie is getting...
and how much better her head control is these days.
Smiles for Daddy during his 24-hour stay (a test we each had to pass this past weekend showing that we could administer all meds, take care of all feedings and alarms and care for 24 hours by ourselves - we passed!)
Since Ellie has an open airway at all times, she's allowed to sleep on her belly. This is her favorite way to sleep. How funny, right? It's a good thing her airway is open because those cheeks would surely cut off airflow when she's face down like this.
Nom nom fingers
We ordered Tubie Whoobies (a brand of G Tube pads) for Ellie - I just love them!
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