Now that’s a title you won’t hear every day, right? This is just a short update on Ellie. Since Tuesday, as they have weaned Ellie off
of her doses of clonidine, Ellie has been going through withdrawal. This is NOT a fun process and totally breaks
my heart. They held doses of clonidine
and propranolol Tuesday night after Ellie’s heart rate was bottoming out. She hasn’t had any of those episodes
since. However, Monday, she was on 15
micrograms of clonidine every 8 hours. Tuesday,
they knocked that down to 10 micrograms… today and Wednesday, 5. Our sweet girl was irritable Tuesday, but
nothing crazy. This morning and
Wednesday morning, she was so irritable that she raised her temp, started
sweating more, and shot her heart rate, blood pressure and breathing rate much
higher than her baseline. Initially, I
thought she was storming again. However,
I was able to rock Ellie and soothe her with singing (my singing… which is
horrible) and running my fingers along her arms and legs. She’s a touch person… like me, and this
calmed her down. If she had been
storming, I wouldn’t have been able to do anything to soothe her. So when the nurses asked if she needed
Ativan, I’d say… no, let me hold her first and see if she calms. It worked Tuesday and Wednesday, but today I
could only soothe her for a minute or two before she’d spike back up. Her heartrate was bouncing around the 170s
and 180s and while it was higher, her pulse ox would dip. She got Ativan this morning and was finally able to rest.
Yesterday and today, they needed to call for an extra
(small) dose of clonidine to stop/slow her withdrawal symptoms. It isn’t something that works immediately,
but it does work. Once past that, Ellie gets
exhausted. Poor kiddo. I’d never known what withdrawal looks like…
now I know that it looks exactly like her storming looked… so if you’ve seen
withdrawal before, Ellie was doing THAT for 4-6 hours each day at home. This is why we kept saying, “this is not colic”. Now at least we have something that’s
relatable for some people… if not directly, maybe withdrawal is something you
have seen on TV. For Ellie, withdrawal
and storming are almost identical… except that I can soothe her during
withdrawal.
She did a 4-hour trial on the trach collar yesterday morning
– and like a champ, Ellie handled it very well (even through the craziness of
withdrawal). The RT made my day when she
came in and said we’d try the artificial nose yesterday afternoon for 4
hours. So from 4:30 to about 9pm
yesterday, Ellie was on the artificial nose (with a little supplemental oxygen). Yahoo!
Essentially, the artificial nose is just a little barrel that attaches
to the end of Ellie’s trach. On either
end, there are air filters. These
filters capture some of the moisture when Ellie exhales and uses that moisture
to dampen the air that Ellie breathes back in.
The filtering/dampening of the air coming in works just like your nose
does… hence, the name.
Today, she’s going to be done with sildenafil (which is
really Viagra… my immaturity makes me snicker at this). Ellie was on this for pulmonary
hypertension. Her last dose was early
this morning. Now that we’re done with
that, we’ll get a better idea of how her pulse ox looks without medicine. The goal is to stay above 75%. Dr. Hirsch (the doc who does the heart catheterizations)
stopped in our room last night and told me that he’d like to do a cath on Ellie
in two weeks. This is just to see where
her new baseline is after the trach and PA band. We thought we would have to wait 8 weeks to
see if any changes have been made. Now,
I do not at all anticipate that she’ll have so much improvement that she’ll be
eligible for surgery… this is just to establish her new baseline, but it might
be a nice sneak peek to give us an idea if it IS improving (which would fill me
with so much hope). Dr. Hirsch was
thrilled that Ellie was so much more awake and alert than she was before her
first heart cath (on December 3rd).
She doesn’t look alert at all in these pictures, but she is very alert
through the day, I promise.
Ellie's artificial nose today.
A close-up of the artificial nose (the white ends of the barrels are the filters)
A full body shot... simply to show you the adorable jeggings ;)
Her 1st trial on the artificial nose (yesterday)
Another exciting milestone, we started to bottle feed again
yesterday. This is the first time that
Ellie’s had a bottle in almost a month.
We start slow, of course. We only
let her take 5 mL (1/6 of an ounce) yesterday… we’ll try 10 today… but these
baby steps will help Ellie regain the ability to eat by mouth… something that
is so basic – something we totally took for granted with the boys. I really want this feeding situation to be a
success. While the g tube is essential
right now in getting her the volume she needs, I want her to be able to partake
in the simple pleasures of eating and tasting and enjoying the daily ritual of
meals. We’re getting there… inch by
inch.
This week, I’ve met some truly amazing people. There is one mom here (who was our neighbor
when we were in the CICU before Ellie’s PA band) who is here with her son. He’s a teenager who has Down syndrome. This lady and her husband had 5 biological
children (the youngest of whom has Down syndrome) and proceeded to adopt 7 more
children (6 of them have Down syndrome).
Ahhhh… I just love this lady.
What a wonderful calling and beautiful heart she has!
I also met Ava’s mom.
Ava is a little girl who spent 7 months in CICU after she was born 2
years ago (if you remember me posting a picture before Christmas of Ellie with
a bear from Ava’s Army… it’s THAT Ava).
She, like Ellie, has a hypoplastic right heart. Ava had a roller coaster ride those first
seven months. She also has a trach and g
tube and, get this… autonomic storms (first person I’ve met who knows what that’s
like)!! Ava’s momma gave me so much hope
because Ava kept getting tests to see if she was eligible for the Glenn
procedure, and they kept saying “nope, not yet”… for over a year (until she was
almost 2 years old). This summer,
though, Ava was finally eligible for the Glenn and did miraculous through surgery
and recovery and is now a very happy little girl. Her mom says that Ava is full of life and
rolls all over the place. Ahhhh – this woman
just made me feel so much better about the outlook down the road.
So yeah – that’s where we’re at today. A day of withdrawal and med changes and a
sweet artificial nose. It’s going to be
a good day now that we’re past the withdrawal symptoms. Thank you for following along. Sorry this post isn’t as short as I led you
to believe, but thank you for hanging out ‘til the end. May God bless you today and always!
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