Quick Update
Okay – I fail… it’s been 15 days since my last post… I’m
sorry. On the plus side, you can always
think, “no news is good news”, right?
But now I have a lot to catch you up on, so let me unload a bit here.
First, I know I said it my last post that I was so thankful
for January to be over because it was a crazy busy month. I’m not sure why I thought February would be
any different. My work load has been
better, but training and discharge planning are making us a little batty
here. We are thhiiissss close to
finishing up our training. Brandon has
to do one more trach change (tomorrow) and we each need to do our 24-hour stay
with Ellie. In the 24-hour stay, we each
have to be one-on-one with Ellie and do all of her trach care, G tube care,
medications, feeds, etc. You know…
normal stuff you do to take care of your kid at home. We’re allowed to use the nurses if we have an
emergency, but that’s essentially like we’re home and have to call 9-1-1. So, let’s not do that.
I had no idea that when you have a kid on a ventilator, you
have to jump through so many hoops. Your
utility companies have to be alerted (because you only have 6 hours of battery
life, so you can’t go long without power).
This also means we’ll be getting a generator – because we live in Ohio
and we’ve had times when we’ve been out of power for days at a time. Our emergency crews have to be alerted and
will likely come out to meet us and get to know Ellie’s situation and where she
usually stays in the house. We’ve also
been told that in the case of an emergency, WE are the trach experts. The EMTs that respond will not work with her
trach, which is fine… but good to know.
If Ellie ever has an instance where her trach won’t go in (which is a
very real possibility), we’ll be calling 9-1-1 and riding along with her to
take care of anything trach-related. We
know how to do CPR (which we both knew before), we know how to breathe for her
with a bag, how to change out the trach in an emergency, and how to trouble
shoot the ventilator (among other things, of course). I don’t even know how many CPR dummies I’ve
bagged in my years training others in CPR… using a medi bag (or bag valve) is
so much different on a real person. I
hear that it’s also very different on a person who is breathing than one who is
not… I never want to experience the later.
Ellie has decannulated once (where her trach has come out
and we had to put it back in on the fly), and we handled that alright. She makes a horrible, wheezing sound when her
trach is out – a sound unlike anything else – so at least we know that and can
recognize it in the future. I have to
say that the worst thing I’ve had to do so far is reinserting her G tube. When I popped her G tube out, I almost passed
out. And I feel like I’ve become numb to
a lot of things that would have made me queasy in the past. The g tube coming out seemed like something
that would be terribly painful (there is a small balloon on the backside of the
tube to keep it in her stomach, so I pulled an inflated balloon through a tiny
hole in her skin – ick). Ellie didn’t
mind so much, but of all things I’ve seen here, that one about had me on the
floor. Let’s hope I don’t have to do
that again, either… but I do know how to replace it if needed.
So… this going home business. We’re supposed to be discharged next Thursday
(2/26), but in order to go home, we have to have at least some nursing care
arranged. This has been a circus, to say
the least, and a roller coaster with insurance and nursing companies and supply
companies. I think we’re moving in a
good direction now, though, and I hope we’re able to keep our discharge date
next week. We’ll see. I’ll make a post later about going home
because there is so much that is different about this stint at home than we
were used to at home before.
We’ll be back in Cincinnati in March for another heart cath
(3/18), so we’ll only be home for about 2 weeks before we come back for
that. From there, the surgical plan will
be in the works. We’ll have more updates
on that when we’re past the next cath.
Bowling Benefit:
I feel like this deserves its own post, but it’s now been 10
days since the Bowling Benefit and I haven’t posted about it yet… so here
goes. On Sunday, February 8th,
there was a bowling benefit for Ellie at Westgate Lanes in Lima. This was another instance where we were
completely overwhelmed by the outpouring of love for our family. The Lima area is not typically my stomping
grounds, so I had no idea what to expect.
We walked into the alley and half of the crowd was donning Team Ellie
Bug shirts. A whole sea of blue
again! There were faces that I didn’t
recognize that came out to support our bug – amazing! There were faces that I hadn’t seen in a long
time there, too, which warmed my heart.
My mother-in-law and Brandon’s aunt Sue planned this event and they did
an amazing job. There were so many other
family members and friends who jumped in to help keep the event going all
day. There were 27 gift baskets filled
with goodies up for raffle. There was a
50/50 drawing for cash. There was pizza,
pop, cupcakes and of course, bowling. I
think everyone had a great time! There
was a prayer quilt for Ellie that was getting prayers tied into it during the
event. The local news showed up to
interview Brandon and ran a story on Ellie on the evening news.
About halfway through the day, we were pulled out to the
welcome table because there was someone there to see us. A group from the Western Ohio Down Syndrome
Association stopped by after seeing an article in the paper about the
benefit. The one family brought their
daughter, Kara, with them. Kara is a
beautiful 19-year-old girl who has Down syndrome. She is a senior in high school this year and
cheered for Perry High School for 3 years (a girl after my own heart, for sure). She is graduating this year and wants to be a
fashion designer. She showed me her
designs and shared her hugs and smiles with us.
Kara brought me to tears. She’s a
strong girl; independent, loving and warm.
Kara is driven and excited about all the opportunities ahead of
her. I just wanted to hug her
forever. I hope that Ellie grows up to
be as full of life and hope and promise as Kara has. Her dad said that they always have to give
Kara challenges. “If she’s not
challenged, she’s not going to grow and we’re not doing what we need to do for
her” he said. He said he has three goals
for her right now. 1 – graduate high
school this year, 2 – get her driver’s license, 3 – get married so someone else
can help take care of her. Ha! At this, Kara gave him a jab and said, “Daaadddd”. You could just feel the love pouring out of
the hearts of the people who came up to meet us and welcome us into their
world. It’s a different world, for sure,
but a world full of more hope and promise than ever before.
In total, 125 people attended the bowling event and raised
over $3,400 for Team Ellie Bug. Three
generations of family were helping out during the event as well as countless
friends. I know there were people who
worked behind the scenes on this and people who took the reins and made it
happen. I am thankful for each and every
one of you. I’m thankful for the
businesses who donated prizes to be raffled in the beautiful baskets. I’m thankful for each person who bowled, or
sent donations, or bought cupcakes or shirts or raffle tickets. At the end of the day, I think I only bowled
2 or 3 frames… but I spent the day giving hugs and sharing Ellie’s story and
talking to people we hadn’t seen in a long time. We felt the love from Team Ellie Bug, that’s
for sure.
Karen, Noah and Jake
Teresa picking which baskets to put her tickets in
The Shuters representing Team Ellie Bug
The Daleys representing Team Ellie Bug
Keykob and Mookie
These ladies were busy all day - Thank you!!
Grandma Ward helping with the basket raffle
The group from the Western Ohio Down Syndrome Association. Kara is up front :)
The Beech family (Andrew was helping with raffles)
Check-in table... the Beech family and Braun family arriving
Signing the prayer quilt for Ellie
The kids were so happy to help with the raffle drawings
There were literally 130+ photos from this event, and I can't post them all here. Sheryl Maier (my mother-in-law) has an album full of pictures on FB from this event.
After bowling, we went out to eat with Sheryl and Denny,
plus Brandon’s 2 aunts, his cousin and her friend. It was nice to relax and bond with family
that we didn’t get to see at all this holiday season. We hope to be able to spend Easter with them…
but we’ll see… after all, it’s Ellie’s world, we’re just taking up space in it
right now.
CHD & Tubie Awareness
Last week was the awareness week for Congenital Heart Defects
and Feeding Tubes… both things that are very much a part of Ellie’s world. If you didn’t see what I posted on FB about
these, check that out. Just a few quick
facts to enlighten your world:
“There are more than half a million people in the United
States who have a feeding tube. About a
hundred thousand of those are children.” – Feeding Tube Awareness Foundation
In Ellie’s case, her feeding tube has saved her life. If not for the tube, or tubes in her case,
Ellie would not be able to take in the calories she needs to support her heart
and lungs (that consume a ton of calories) as well as the rest of her
body. When Ellie’s been in heart
failure, her body was struggling just to keep her awake some days. She didn’t have enough energy to try to
eat. To this day, even with all the
extra energy that Ellie gets (thanks to her tube), she gets exhausted very
quickly. When she eats by mouth, she is
only able to eat 3-5mL at a time (less than a teaspoon). Until I was the proud parent of a tubie, I
had no idea that feeding could be a challenge… that taking food by mouth wouldn’t
be an option for several months. I was
just concerned that my kids would someday be picky eaters. I had no idea this other world existed where
you get excited about the idea that maybe your child will eventually take a
little food by mouth, ANY food by mouth – something that is so normal and
social and part of family life. Until
your reality is different, you never know how common these issues are. This is why it’s important to raise
awareness.
Just to give you an idea of how critical feeding tubes have been for Ellie
And did you know that congenital heart defects are among the
most common birth defects in the U.S.?
It’s true. They can range from
heart murmurs to very critical defects that require immediate open heart
surgery on the tiniest of bodies. There
is a campaign to add pulse oximeter testing to all newborns. This is an inexpensive, very fast test that
can tell (without the obvious signs) if a baby is not oxygenating well. It takes less than a minute. This can help diagnose critical heart defects
that were not seen on prenatal ultrasounds.
Pulse oximeters are non-invasive… Ellie wears a pulse ox 24/7 and will
continue to wear one for a few years, likely.
So simple… so life-saving. Be
aware!
Ellie’s heart defect was seen on our 18-week
ultrasound. Our obstetrician thought she
had some sort of ASD (atrial septum defect), a hole between the top two
chambers of her heart. Once we were
examined with a fetal echocardiogram, Ellie was diagnosed with a complete A-V
Canal Defect, which means she’s missing most of the septum of her heart (making
her heart 1 big chamber instead of 4) and she has just 1 valve instead of
2. As if that wasn’t enough to rock our
world, we found out in November that the right side of Ellie’s heart is
entirely too small to function even if she had surgery to repair her
septum. This is called hypoplastic right
heart and is a very serious defect which will result in Ellie having multiple
surgeries to bypass the right side of her heart completely so that her heart
works as 1 ventricle instead of 2.
Medical mumbo jumbo, I know. But
the more people know about these things, the better.
There is nothing we did wrong to cause Ellie’s heart
defects, and nothing we could have done to prevent them. Essentially, when Ellie was about the size of
a sesame seed, her heart was supposed to divide into 4 chambers and start to
beat. It skipped that first step and
developed all crazy-like on its own. It
beats like a little champ, but is all kinds of busted up… I say that in the
most loving way possible. J Thank God for good medical care and amazing
(non-invasive) prenatal testing. We
welcomed Ellie into our world knowing she’d have a hard road ahead of her… but
willing to dive in and give her the best treatment we could find. Ellie’s trach and g tube were essential
because of her heart defect, really. But
by golly, every stinkin’ day in this place is worth it for the smiles on that
sweet baby girl’s face.
Ellie is showing off her scar (because tough girls have scars) for CHD
awareness week... and wearing her pretty red tutu for Valentine's Day
Thank you all for following along. I’m sorry it took me so long to post – I’ll
try to be better moving forward. We love
you all and thank you for your prayers and constant support.
Side note
Keep checking the Team Ellie Bug Events page (posted
1/9/15). We have 2 new events in the
works right now and this is where I’ll continue to post any happenings for Team
Ellie Bug. Much love!
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