These are two things I didn’t think we’d ever have in our
medicine cabinet. At least not for a
very, very long time – ha! I surely
didn’t think they were things we’d be giving our baby. But, as it turns out, these two drugs have
applications that are very different from what the public perceives as their
only uses.
First, let me tell you that I’m not one of those people who
prefers to medicate – ever! We’re those
crazy people who try everything BUT medicine to solve our ailments before we go
to the medicine cabinet or pharmacy… that’s just how we roll. Ellie has flipped our holistic/alternative
medicine world upside down, though.
Being perfectly aligned with a belly full of organic, grass-fed yum yum
and skin slathered in homemade, raw, organic butters/creams, scented with
essential oils is fabulous… but it won’t repair the holes in her heart. It won’t make up for the fact that the right
side of her heart can’t function like it should or make up for some of the
physiological things that come along with Down syndrome. I just want to clarify that we’ve never been
big advocates of traditional medicine… but traditional medicine is exactly what
is healing our child, so we can’t hate on it, right? I don’t want anyone to think that medicating
Ellie is fun for anyone… but it’s what has to happen to keep her safe and to
get her on the road to getting better.
Heck, I’ve never been a fan of surgery, either… but that’s the road we’re
on here. If this journey has taught us
anything, it’s that each child and situation is unique and it’s best not to
judge how other people approach feeding, diapering, medicine or treatment… every
parent (okay, 99.9% of parents) is/are doing everything in their power to do
what is right for their child. Even if
the means are different from what you would do, it doesn’t mean they aren’t
trying their best. The road we’re traveling
with Ellie is so much different than the one we traveled with the boys, but we have
been trying our best since day one with Lance, even as our methods morph from
day to day.
That being said, Ellie has had a few good weeks lately. She is still storming… in fact, she’s been
storming every day since the reemergence of her storms on January 6th. The thing that’s frustrating at times is that
when we transfer to a different unit within the hospital; we have to explain
everything again and again to staff members until they get to know Ellie. When we’ve been inpatient for 68 days
already, and we have 2 to 3 different nurses every 24 hours (plus new docs,
nurse practitioners, PCAs and nursing students), you can see where this can get
tedious. Fortunately, in the TCC, they
have a “Primary Nursing” program. So, we
now have a primary daytime nurse who knows Ellie very well and is always on top
of things – finally, some continuity of care.
We do, occasionally, get a nurse or doctor who thinks we’re crazy or who
doesn’t believe the diagnosis of autonomic storming. Ehhh… think what you will… I’m not the type
to make up complications for my child… this poor kiddo has plenty of mountains
to climb without me being a hypochondriac.
But I kind of want to punch people in the throat when they question the
diagnosis and ask things, like, “Does she just have a dirty diaper?” or “Do you
think maybe her skirt is irritating her?”.
Yep – I’ve left her in a poopy diaper and an itchy skirt for the past 4
months… how did I just now realize that?
Ha.
Whoops – tangent… my bad.
Back to our sweet bug: Ellie was
switched from Ativan to Valium as the rescue drug for her storming
episodes. I didn’t know that Valium was
used for anything other than anxiety. Valium
doesn’t work as quickly, but it’s an oral (errr… G Tube) medicine that can be easily
administered at home. The thing I like
about it is that Ellie doesn’t go out with Valium. She is still alert, but more
comfortable. Ativan was heartbreaking at
times because it would often “snow” her and she’d be out for hours. So on days when she had Ativan (which was
every day), we wouldn’t be able to do as much therapy and such. Valium is a slower acting, but better option for
Ellie. When they finally charted a
pattern for her storming times (always in the morning), they started scheduling
a dose of Valium to hopefully prevent the storming episodes. Ellie, however, just decided to start
storming earlier and earlier in the day so that it wasn’t yet time for Valium
when she kicked off her shenanigans. We’ve
been putting her on ice to slow the storming episodes. Valium plus ice works beautifully. And Viagra?
Well – Ellie’s actually been on Viagra for a while now. The generic name for Viagra is sildenafil and
it’s actually a medicine used to treat pulmonary hypertension. It’s working beautifully on Ellie right now
and may be a long term medication once she’s past her next surgery. Who knew, right? Well – other than my nursing and pharmacy
friends. She is still on propranolol (a
beta blocker used in her case to treat her storming) and clonidine (a BP med
that blocks some of the neuro impulses associated with her storming) and Lasix (her
original heart medication… a diuretic to treat her pulmonary over circulation). And if you’re noticing a pattern here, you’re
not crazy. Almost all of the meds that
Ellie is on are used to treat other conditions.
Yes, maybe this med is for blood pressure or this one for anxiety, but
they also work to block certain neuro transmitters to calm her storms. Oh, and this one for erectile dysfunction,
yeah – it’ll help with the pressure in her pulmonary arteries. And THIS is why prescription medications kind
of freak me out. We’re using them for
their side effects, essentially. We’re
still weaning clonidine, but very, very slowly now. I do NOT want her on this at home. I do not want to have to worry about her
starting withdrawal if we miss a dose for whatever reason. I don’t plan on missing doses of medicine, but
we all know that sometimes things happen where you forget one of the million
things that you are supposed to do in a day – and I don’t want big repercussions
for missing a dose of that nasty stuff.
On a very positive note, Ellie is getting stronger by the
day. She’s been working on this head
control business for months now and for her, it’s a very big task. A head is a heavy thing to control when you
have low muscle tone (every time we’re working on it in PT and OT I think of
the line from Jerry Maguire, “the human head weighs eight pounds”) – literally,
EVERY TIME. In the past 2 weeks, Ellie
has shown remarkable improvements in head control. This is a big step for her. She is still not taking any food by mouth –
the bottle business is just not working – but once she can sit up and support
her head, we’ll be allowed to try some purees.
I can’t even begin to tell you how excited I am to try those. I’m a
little bummed that she’s forgotten how to eat by mouth, but by the way she
sucks her thumb, I know she hasn’t actually lost the ability to suck, she just
doesn’t have interest in bottle feeding.
Little turkey!
And she smiles – oh, how she smiles. She’s been able to smile for a while now, but
in the past two weeks, she’s really decided to share her smiles with us
more. Last Monday (Jan. 26th)
was probably the best day that Ellie’s ever had. She was smiling all day long. She was pleasant and very alert. She did well for PT and OT that day and was
so happy, I almost think she’s starting to laugh a bit (but we can’t hear it,
of course, because of the trach). It was
just a remarkable day for her. She had
been sick the week before and she was getting sick, storming more severely, and
had a ton of secretions in her trach.
Antibiotics (again… something I really try to stay away from) worked
wonders on her little body. She was
still sick for 4 or 5 days, but recovered quite well.
Other than sneaking in snuggles and such, we’ve been swamped
with work and training. For me, January
was a killer month at work. I was so
happy to log off work last Friday and put January to bed this year. When Brandon gets here, we’re focused on
training. We spend our weekends (trying
to entertain the boys) and trying to squeeze in as much trach training as
possible. We knocked out a ton of
training this weekend. The next few
weekends will be packed as well, but this is what we need to do to get this
sweet girl home.
We should get to go home in another 4-5 weeks or so
(hopefully sooner if we can get the home health care set up and training in
sooner). Hopefully, we can go home by
the end of February (as long as we can get rolling on home health care). Ellie is slated to have her next heart cath
in mid-March. So if things get pushed
back here, we may be staying through the heart cath. And if our prayers are answered in the manner
we’d like them to be, Ellie’s next cath will show that she’s ready for her next
heart surgery. Sooooo, that would extend
our stay by a week or two. I guess what
I’m saying is maybe we’ll be home this month… maybe next month… maybe
April. We really have no way of
knowing. We’ll try to get out this month
so that we can come back for the cath, but there are a lot of factors that play
into that planning. When we go home, we’ll
have a minimum of 8 hours of nursing care, 7 days a week. We’ll likely have more like 12 or 16 hours a
day. As you can imagine, this will take
some serious coordination to get back into a routine at home. If we end up hanging out here until the first
week of March or so, I may see if we can move up the heart cath so that we aren’t
going home for 4 days and trying to coordinate nursing care and then coming
right back. But hey… it’s Ellie’s world,
I’m just living in it. We’ll do whatever
is best for her. At this point, home
seems kind of scary, really… even though we can’t wait to be back.
I have so much to say about our past weekend, but I’ll
devote a blog post to it – hopefully tomorrow.
For now, I’ll let you catch up on our past 2.5 weeks in pictures… did I
mention that Ellie will be 5 months old tomorrow?
Ellie in a gown awaiting her heart cath on 1/16
Not yet awake after the cath... but had GREAT results!
My sisters (Emily, Tracy & Karen) abducted me on Friday, 1/16
so we could do a wine and canvas night in Newport
Karen & I hard at work
Mom & Dad stopped by on Saturday 1/17 to drop off the boys and see Ellie in the TCC
Big eyes for Aunt Tracy
Grandma & Grandpa Maier came down to snuggle with Ellie & celebrate Lance's bday
Out to dinner for Lance's 4th bday
He's not happy at all, is he?
Ellie likes to flirt with her new PT, Sam.
Who is that beautiful girl in the mirror?
The boys back home
When they came down to the RMH on 1/23, we had their tent set up on the bed...
they got to go "camping" all weekend
And on Saturday, 1/24, it was beautiful out - perfect day for the zoo
Selfie w/ Mommy - 1/28 (another nose trial window)
Face painting at the RMH - he's supposed to be Capt. America... rough, I know
Ellie gave smiles to Andrew Beech when he came to visit
Lovin' the mirror again
Kaleb's face paint... quite impressed with this Raphael
Now that Ellie is allowed to lay on her belly (sternal precautions are almost up), she loves sleeping this way... and it's perfectly safe because her airway is always open.
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