Our beautiful girl is now 7 months old... and home!
Home, sweet, glorious home!
We were finally released from Cincinnati Children’s on
Friday, March 20th (our 114th day inpatient). I’m still so floored that a one-hour
appointment turned into a stay just shy of 4 months. We packed up our room and went to visit our
friends at the Ronald McDonald House.
Oh, how I wish we’d been taking pictures all along with the friends
we’ve met. These people (families in
CICU and the RMH) have changed our lives and opened our eyes to a world which
is completely unknown to the rest of the world.
The RMH is full of people who are fighting for the lives of their
children every day. They’re people who
know the scary reality of their situation, and yet choose to be happy about
life. They’re people who value each day
more than most people because they know how precious their days are. They’re people who rattle off medical
terminology as if it’s their first language and ask blunt questions out of
compassion and understanding. They’re
people who ALWAYS see the child under the veil of equipment or diagnosis. They’re OUR people… even if we’re not sharing
a kitchen or family lounge with them every day.
These people offer a reprieve from drama, grumpiness and negativity. It’s not an easy world to live in, but at
least we were in good company while we were there. We miss these people BIG time already!
Some of our RMH family: Jack, Cassie, Tillery, Alana, Christine and Austin
Christine & Austin finally got to meet Ellie bug
Alana and Tillery meeting Ellie
Diane was our day shift primary nurse in TCC - we love her!
Alexa was Ellie's evening primary nurse - love her, too!
Kylie was Ellie's RT (we don't have primary RTs...
but we had Kylie a lot... and of course, we love her, too)
And Linda - she was frequently our PCA... love her so much, too!
We arrived home Friday evening and met with the nursing
company, the enteral supply company (for feeding/G Tube stuff), and the vent
supply company. We had about 12 big
boxes of supplies to organize, plus enough equipment to make our neighbors
think we’re running some kind of janky clinic in our living room. As we were unloading, I went to get formula
ready for Ellie and realized that I wasn’t sure where her feed pump was. After searching through all of the boxes we’d
brought home, we determined that the feed pump must have been packed in the
boxes from the Ronald McDonald House… which were in B’s truck… in
Cincinnati. We had both vehicles down
there, but need to have 2 adults in the vehicle with Ellie at all times, so we
left one vehicle behind to come home.
Brandon left the house around 8pm to drive all the way back to
Cincinnati to get the feed pump. He
didn’t get back until after midnight. I
bet we don’t make that mistake again!
We were up by 5am on Saturday to prepare to meet our daytime
nurse at 6am. I was a nervous
wreck. Our nurse, Rae, showed up and we
jumped right in trying to get into the swing of things. I was stressed out, to say the least, and we
had several hours where I was just in freak-out mode. Soon after, though, we started to get to know
Rae and by the end of the day, we knew that she was a great match for our
family. Praise GOD!! Sunday afternoon we’d have lunch at Mom &
Dad’s house. We walked in to balloons,
Team Ellie Bug shirts, flowers and “Welcome Home Ellie” signs. Tears welled up in my eyes… I had no idea
that this was all about Ellie. My whole
family was there… plus my grandparents.
My aunt and uncle stopped in to see us, as did Kelly, a friend who has
plenty of experience with trachs and vents.
Rae came with us, of course, and got to meet my crazy family. Denny, B’s stepdad, stopped in, too. He was heading down to Cincinnati with B to
pick up the truck. It was a great day!
Ellie snuggling w/ Aunt Karen at the "Welcome Home" party
Kelly let Ellie try out Addison's wheelchair for size... we have some growing to do yet!
Grandma Schroer holding Ellie
Sunday evening, B found out that he was no longer
employed. Oy! We’d been talking for a while about him
possibly changing careers… he’s been really inspired by our experience with
Ellie and is interested in becoming a nurse.
I’m super excited and proud of him – but the stress of being a 1-income
household right now is daunting. He
starts his first step in the nursing process this fall, so things are happening
fast. I guess it’s a blessing that it’s
such a production to get out of the house with Ellie right now – maybe we won’t
make impromptu trips that damage our budget considerably, right? We know that everything will be okay. It doesn’t mean things are not stressful, it
means that we have faith that we’re being taken care of. On the plus side of this, it has been amazing
having Brandon home over the last two weeks.
He’s been able to go to appointments with me and has been able to keep
up on feedings and medicines and giving the boys their fair share of “me”
time. Right now we only have a daytime
nurse… we’re still in the weeds trying to get the evening nurse on board and
the overnight nurse rolling. It’s all
just paperwork at this point. Bug is
quite the handful… well, her equipment and meds and such more than her, really;
and having Brandon home to take on the brunt of our new normal has been an
unbelievable blessing. He’s been the
runner when we’ve needed groceries and such… he’s been able to help out with
meals and we’ve been able to eat as a family almost every meal – this has never
happened. So, while the stress of this
is almost overwhelming, it’s also been a great few weeks, really.
The boys wanted to lay on the floor with Ellie at home and watch a movie
Pancake Friday! This was something the boys got used to at Grandma and Grandpa's house... we're trying to keep it alive at home.
Kaleb and Ellie playing on the couch. Ellie is THRIVING at home with her brothers.
Surgical Conference:
Dr. Hirsch (who does Ellie’s heart caths) called last week
to give us the results from the surgical conference. Essentially, he didn’t tell us much at
all. He said that “no one has excluded a
2-ventricle repair, no one has excluded a 1.5-ventricle repair, and that no one
has excluded a 1-ventricle repair”.
Sooooo… there isn’t a surgical decision right now. He said they all feel like she’s doing really
well right now – aside from her high end diastolic pressure. So we talked about what we could do about
that. He said there are 2 different
medications they can use to treat this so that it doesn’t get out of
control. He listed propranolol and
coversyl (I think… he has an accent, so I may have this name wrong… it’s an ACE
inhibitor, though). My concern is that
Ellie’s been on propranolol since early December… so I’m kind of concerned that
the medications being suggested won’t work.
I’m more concerned that propranolol IS working… and that her end
diastolic pressure IS being “controlled” now… and still doubling in two
months. Dr. Hirsch talked about
switching Ellie from propranolol to coversyl and talking us through that
transition. My concern with that is that
propranolol is the drug that is preventing her storms. So, if we wean her off of it, are we looking
head-on into storming again? So many
questions to ask yet. Dr. Hirsch said
that they would want to see Ellie back in 3-5 months for another cath.
On March 25th, we finally got back to our
cardiologist at Dayton Children’s. Oh,
how nice it was to see her sweet face!
Ellie had an echo and an EKG before we got to sit down with Dr. Luby and
discuss her thoughts on our journey and her plan for Ellie’s future. We got the vibe that Dr. Luby was not really
thrilled with what had happened (surgically) in Cincinnati. She said that the PA Band was a good thing because
it stopped Ellie’s lungs from being flooded, but it was a bad thing because two
things ALWAYS happen to people with complete AV Canal defects when they get
banded. One, end diastolic pressure
always increases. She explained that
Ellie’s end diastolic pressure (EDP) in January was 7… a normal EDP is 3.5-4.0…
so Ellie’s was already double what is should have been in January. By March, it was four times what it should
have been. UGH! That was never explained to us that way
before. She also said that in all of
Ellie’s previous echos, her AV valve (the one, common valve she has in her
heart) was tight as could be. There was
no leakage at all. Now, it has some
regurgitation. This always happens when
a PA Band is placed on a person with a complete AV Canal defect because the
pressure inside the heart increases dramatically. Soooo… now we’re seeing the repercussions of
her first heart surgery – and these make us very nervous. Ellie still looks very healthy and she seems
to be thriving, but are we causing irreversible damage to her heart while we
wait? I don’t know anymore. I asked Dr. Luby what kind of a timeline she
thought we’d have for Ellie. She first
said that she was sending all of her files and tests to Boston for a second
opinion – whether it’s what we were requesting or not. Praise God… because this is exactly what we
wanted her to do. She said that she’d be
looking to Boston if this was her child and she has connections at Boston and
was sending Ellie’s information to them with a letter and detailed
history. We are praying that we hear
back from them soon with a plan for a 2-ventricle repair. We have another cardiology appointment this
Wednesday and we’ll see if she has any feedback from Boston yet. Dr. Luby said that a decision needs made this
month and she likely needs surgery within 2 months (so… we’re now looking at 6
weeks from now). We’ll keep you posted
on this schedule as we find out more.
Dr. Luby is also switching one of Ellie’s meds around. When we went to Cincinnati, Ellie was on aldactone
– which is a diuretic that helps her body hold on to her potassium (instead of
peeing it out). In Cinci, they took
Ellie off of aldactone and instead, started adding potassium chloride (KCl) to
Ellie’s feeds. When I had asked in
Cincinnati why this was done and if we’d go back on aldactone, they said that
they’d rather add KCl to her feeds instead of putting her on a drug that had
other possible side effects. I got that…
and that sounded good to me. Dr. Luby
said that KCl was great for a clinical setting, but she did not want us to use
this at home… especially since we’ll be having several nurses throughout the day
administering meds and such. If a night
nurse mistook the 8am dose for an 8pm dose and Ellie got two doses in one day,
it was potentially fatal. WHAT?? Fatal?
I said… we need to get rid of that NOW!
So Dr. Luby wrote the script to switch Ellie back to aldactone and off
of KCl. Whew. When I hear things like this… I wonder what
else we’re dealing with that is that scary that we don’t know about? Ick. So
now we’re just waiting… waiting to hear back from Boston… waiting to see what
Dr. Luby thinks this week.
Easter:
Now that we had a downer in this post, it’s time to talk
about something really happy: Easter! We
had a great Easter weekend this year. It
was awesome to finally have Ellie home for a holiday with family. On Saturday, we loaded up (with our nurse,
Rae) and headed to Kettlersville to visit with my Grandma Shuster. Grandma was so excited to see us (and especially
Ellie) and held on to that little girl the whole time we were there. Ellie was adoring Grandma, too. After visiting Grandma, we headed north to
Lima to have the Ward Easter with Brandon’s family. As always, Aunt Kay made enough food to feed
about 60 people. Ha! It was wonderful because we were there for
lunch and dinner, so that whole food overload worked out well. Ellie finally got to meet our family from
Tennessee on Saturday and got to meet her Grandpa Ward and her new baby cousin,
Zoey, too. There was never a moment when
Ellie wasn’t being snuggled. Grandma
Ward snuggled Ellie and sang her sailor song – the same song she sang to her
kids and grandkids and our boys to get them to sleep. It was adorable! The older kids all got to participate in a
massive egg hunt through Kay’s yard.
What a great time with some great people! We arrived around 1pm and didn’t leave until
about 9pm. It was nice to have this on
Saturday when we could spend so much time together.
Grandma Shuster with the kids
Grandpa Ward meeting Ellie bug
Lance hunting eggs at Aunt Kay's
And Kaleb
On Easter Sunday, the boys awoke to eggs hidden in their room. They excitedly ran through the house finding eggs. After breakfast, we realized that a mystery bunny had delivered Easter baskets on the porch and hid eggs through our yard. What a wonderful surprise! We took the family to church and brought
Rae along, too. After a great Easter
service and hugs from lots of friends, we came home for a bit before heading up
to Lima again to spend time with the Maier family. Again, Ellie wasn’t short on any cuddles and
the boys spent a lot of time outside blowing bubbles with Grandma Maier. Again, full bellies and lots of time with
family. Lastly, we drove to Anna to have
Easter dinner with my family. We spent
the balance of the night visiting and laughing with my family. My Grandma and Grandpa Schroer were there, as
well. The kids played in the bounce
house and enjoyed time with their cousins.
Holidays are always so busy, but we’re so thankful that we have family
to visit and an abundance of food and love.
We often take this for granted… but what a blessing this really is! After spending Thanksgiving and Christmas in
the hospital, it was awesome to finally get back into our normal holiday
routine. We'll have to get pictures from other family members for the other get-togethers... I think we were lazy on snapping pictures on Sunday.
This brings us to this week and now you’re caught up! Yay! I’m
sorry that it took me so long to post… hopefully you enjoy all the pictures in
this post, though. Thank you for your
prayers and thoughts along this journey.
Here are some additional pictures for your viewing enjoyment. We were finally able to get professional
pictures taken of the kids together.
I think I need a GIANT print of this in the living room
I absolutely love Ellie's eyes here
100% rotten!
Sweet Kaleb
And sweet Lance
Ellie's warrior pictures. Our strong girl showing off her scars.
Ellie with her Cardiac Beads of Courage. She earned beads for inpatient days and procedures, blood draws, dressing changes, feeding accomplishments, etc. She is quite the warrior!
