Haha – if that isn’t a strong title, right? Before my medical buddies get defensive… I am
trying to be understanding, here.
So here’s a little back story to what’s going on with Ellie
bug right now. On Monday night, Ellie
starting having a fit around 2am again.
Dang it – we were hoping that we were on the other side of those. Brandon and I took turns trying to soothe her. We made sure her diaper was clean and dry and
that she wasn’t too cold/too warm… and that her feed pump was set up fine. Still cranky.
Dr. Luby said that after they’d ruled out all other things, this was
probably just colic. “Just colic” is
funny to me. I know we do not have a
fraction of the colic experience that other parents have had or are having… but
it’s terrible. I think I have a lot of
patience most days… but this colic deal is not fun – for Ellie, for me or for
Brandon. Anyhow, the worst part of this
fit was over around 6:30am. She was
restless, though, for several more hours.
Around 9:30am, I went over to her crib and she was drenched in sweat. I took her out of her cozy sleeper and took
her temp – 103.8F. Yikes! I called B and gave her Tylenol. I know that we have strict instructions from
the cardiologist and from our pediatrician that if she’s running a fever of 100.4
or greater, that she needs to go to the ER.
We had the same rules for our boys when they were less than six months
old. Dang it. I’m not trying to sound selfish here, but I
had a very busy day and a meeting at 12:30pm that had already been moved when
she was in Children’s before. So Brandon
came home and picked Ellie up to take her to Dayton again. They arrived around noon.
Ellie bug in the ER. She was tired... and extra wiggly.
Tracy sent me this picture of our boys hanging out with Uncle Josh at work Tuesday afternoon.
She was in the middle of testing when I came down around 2pm. She wasn’t allowed to eat until after she had
the testing done, so she was a hungry little monster by the time I could feed
her. She was pretty cranky still, so it
took over and hour to gavage this time.
Her urine and blood tests for viruses came back negative. They did not check mucus because she wasn’t
congested at all. Around dinner time,
the ER doc came in and said we’d start getting ready for discharge. She stepped out to write the discharge orders
while a nurse came in to take one last set of vitals. When he hooked Ellie up to see her oxygen
saturation, it was lower. It was in the low
80s. I told him that her baseline was
the low 90s, but that she’d dipped into the 80s in other hospital stays. Then Ellie decided to play games. Her pulse ox dropped into the 70s. At that time, the nurse plugged her into
oxygen. I told him right away that our
cardiologist didn’t want her on any oxygen.
Cardiology came in and took her off of oxygen. The nurse came back in, spazzed out that she
was low again, and again started oxygen.
For the third (or 5th or 7th) time, I told him
that Ellie wasn’t supposed to be on oxygen.
We went back and forth like this several times… and I was pretty darn
frustrated (to say the least). I know he
was just doing his job and I know that he was following a typical
protocol. I know that he probably deals
with bossy parents all day long. I’m
sorry for this. But every time he hooked
her up to oxygen, my blood boiled a bit.
I knew that cardiology didn’t want Ellie on oxygen because it would only
make matters worse. She has pulmonary
hypertension and oxygen dilates the blood vessels in her lungs – exaggerating
what was already making her work so hard to counteract. When her pulse ox was really low (it went as
low as 58% at one point) she turned a dusty blue color. I’m not going to lie, it was pretty darn
scary… but the nurse was a lot more panicked than I was… which is why I wanted
to punch him. Seriously, dude… you work
in the ER at a children’s hospital… THIS cannot be the worst thing you’ve seen
today, right? End rant.
Needless to say, we weren’t going home after those
shenanigans. The ER doc started the
admission process, instead. Dang it – a full
180. They suctioned Ellie's nose to test for viruses there. She came back in (the ER doc, that
is) and said that she’d talked with cardiology again and also talked with the
ICU. Both said, “I don’t care if she
dips into the 40s, DO NOT put her on oxygen”.
They were okay with her being on room air, but not more than 1
Liter. They were originally getting us a
room in the Almost Home unit on the 4th floor, but the respiratory
team suggested we go to the 3rd floor where the staff used air more
regularly. Sounded good to me – the
third floor had been our home the last two times we’d stayed. When we found out we were headed to room 358,
I said, “Hey, that’s the same room we were in before. Those nurses are going to be excited to see
how much bigger Ellie is”. And they
were. When we were in 358 last time, it
was when Ellie was a month old and was admitted for failure to thrive. She weighed a lousy 6 pounds 7 point some odd
ounces. She’d gained three whole pounds
since then and (while she’s still very much a peanut) she’s so much bigger and
chunkier than before.
After bath picture of the boys with Makayla and Zandria.
Ellie was given Tylenol at 3:30am, but around 4:30am, her fever spiked again. Since they couldn't give her anything, they stripped her down to her onesie, turned our thermostat way down and put her on a cooling pad. This picture makes me shiver just looking at it.
The viral tests (from her mucus) came back negative, thank
goodness. So we’re waiting on cardiology
to tell us if they think this is some kind of infection or if this is just
going to be our new norm as we get closer and closer to surgery. The cardiologist who was with us in the ER
did say that we had to keep a close eye on her breathing and congestion. She is all clear now, but if she does catch a
cold that settles into her lungs, surgery would have to be moved back 4-6
weeks. We don’t want that. We want to get through surgery and get this
NG tube out as soon as the surgical team is comfortable with everything.
Long story short: she
likes to make us panic and we’re still waiting on a surgery date. Oh, and she’s a rotten little turkey… no
surprise there.
---- update as of 4:00pm 11/12 ----
At about 2:30 today, there was going to be a concert in the
lounge on our floor. Since Ellie isn’t
in any kind of isolation, we decided to venture out and enjoy some music. The performers were awesome. We saw Raelynn (who I remember from watching
the voice a few seasons ago) and Maddie and Tae… all country singers. There were only a few people in the lounge,
so it was really cool to be so up close and personal. And our sweet Ellie bug got her picture taken
with these beautiful young ladies. I wasn't familiar with them, since I rarely listen to country music, but click on their names above to listen to one of the songs they sang for us.
Ellie meeting these pretty girls.
Shortly after we were back in our room, Dr. Luby walked in
to chat. She said that Ellie looked
great and that all of her test results were negative, but to just watch
her. She said her fever is what was
causing her fussiness and not the other way around. She said there was no amount of fussiness
that could raise her body temperature that much. We talked about how Ellie seemed to be so
hungry all the time and she said it was because of the continuous feeds. She made a good point that because she’s
getting 30 ccs an hour (instead of 85 to 90 at a sitting), she never gets a
chance to fill her belly. This causes 2
things. 1 – she never feels full and
will always feel hungry – not ideal, but not terrible. 2 – this can actually shrink her stomach if
she’s ALWAYS eating this way. So we need
to make sure she’s just getting this during the night. Good to know!
She also said that she talked to the surgical team in Cincinnati and
that they should be in contact with us to set up a consultation and surgery
timeline in the next week or two. So I’ll
be waiting for that call. Otherwise, we’re
good to go. Well, except that as I write
this, they’re taking her vitals and she has a fever of 102.4 again. Really, Ellie? Really??
---- update as of 9:00pm 11/12 ----
The doctor did end up discharging us, praise God! She was concerned about the fever, but asked
that I keep an eye on it and make sure that we’re in contact with our
pediatrician within 48 hours of discharge.
I can do that! So we brought our
baby girl home and our house is full, once again!
Thank you for your prayers and for following along. Much love!
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