A lot has been going on with our
big girl since the end of July. We feel like she’s been making a load of
progress since she turned two in June. The main thing is that on July 23rd,
at her Pulmonology appointment, we got the “okay” to start sprinting her!! That
means she is breathing on her own, through her trach, the ventilator is powered
off, and we disconnect the circuit tubing for a specific amount of time each
day. The first day (at the
doctor’s office) was 10 minutes and we continued that through the week, the
following week was 15 minutes, then 15 minutes twice a day. Now we are up to 45 minutes twice a day! Emma has
seemed to enjoy it and will often laugh and flap her arms as we disconnect her
from the ventilator. Only a few times has she cried and gotten hooked back up
if we ended up trying to sprint her too soon before or after a nap, while she
was tired. Her Breath Rate is also off all during the day. Before July 23rd
we would turn it back up to 10 when she napped, but now we only have it up when
she is going to sleep at night. At the last appointment her Pressure Control
and Pressure Support were both lowered to 12. All of this has to do with how
much air the ventilator pushes into her airways and lungs, versus how much her
body can do on its own. Yesterday was
her most recent Pulmonology appointment, and these are the latest updates: She weighs 17 pounds, 11 ounces (with her clothes and diaper on), her length is 25 3/4 inches. We are upping the sprint times by 10 minutes each week now, compared to five minutes before. And she does not need the RSV shot with the Synergist medicine anymore since she is over two years old. I thought it was a trach or ventilator thing, but she said no.
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| The Rey hairdo (from Star Wars) & Monkey going into Retirement since he hasn't been used since last October! |
On July 25th, Emma
required an emergency trach change, or a trach “re-insert”, rather. She loves
swinging her vent tubing around and when we went to pick her up to take her
back to her bedroom for the night, the vent tubing got caught on the wheel of
the ventilator stand. Michael put her back on the floor and asked me to turn up
her oxygen (which is always connected but giving her zero support 99% of the
time since she doesn’t usually need it unless she gets water down her trach)
and turn the light on. I got up from the couch when he added, “Quickly!” When
she started turning dusky (a grayish purple, which Michael noticed as I turned the overhead light on), that is when Michael realized that her trach got
pulled out even though the ties were still around her neck. The part of the
trach that goes inside her throat had come out and was lying to the side, on
the outside of her neck, hidden under her ties. I dropped to my knees, helped
Michael sit her up, undid the Velcro of her ties behind her neck, and quickly
supported her shoulders, holding them above the floor so she was leaning back
and her head was almost on the ground, exposing her airway and trach stoma
(neck hole). Michael re-inserted the trach and Emma quickly blinked her eyes
again and the pink color came back to her face as the oxygen entered her lungs.
We all relaxed for a few minutes before taking Emma to her bedroom. Michael
said he was really worried that she would fully pass out, like she used to do a
lot in the NICU two years ago (before her surgery in Michigan where she got the
3D printed airway splints attached). A few days later we talked about it again
and he said he wondered what he would have done if it happened when I was at
work or somewhere else. So even though she is doing well without the
ventilator, she definitely still requires the trach.
Emma got her first haircut on
August 19th! Michael preferred a friend to come to our house to cut
it instead of taking her to a cheap salon. Plus the hairspray fumes are never
fun to breathe in. A girl named KD who Michael knows came over around 4:30pm to
cut it. Emma was so cute with the huge black cape around her, trying to see
what KD was doing behind her. Michael distracted her with her spinning light so
Emma kept her head down and looking forward. It only took about 20 minutes and
she probably only cut off about 2 inches, which is what we asked her to do. She
was sweet and only requested payment in the form of a Chick-Fil-A meal.
I
“accidentally” taught her how to “give kisses”. It’s more of a face lean in,
but we love it!! One day I had Emma sitting on my lap while I
was watching TV and she was facing me. I would give her a kiss on the nose
every 30 seconds, then she started leaning forward very slowly and tilting her
head juuust right so her nose (not her lips) would touch my lips, which would
make her laugh. Then she did it 10 more times! By September 1st she
started responding when I would make the kissy noise about five times. It works
better if she is sitting higher than us, like when she’s propped on her trach
table and I’m sitting on the floor that way she can lean her head down for the
kiss. And I love it even more when she does it without us needing to make the
kissy noise. Sometimes for Michael she will tilt her head down so he kisses her
forehead, but I think that’s because he’s taller.
Emma
also gets more “handsy” every day and explores more of what she can grab and
open on her own. She is able to open the medicine port on her G-tube and we had
to start wrapping it up with Coban tape when not being used because she would
leave it open and formula would be dripping out until we noticed. Michael said
it happened one night I wasn’t there (a rare occasion- only my second night
away from home since she came home from the NICU) and the formula got all over
her and in her hair, so he had to give her a bath in the middle of the night.
He told me that Emma laughed the whole time! She also loves ripping her foot
probe off, within 10 minutes of having it put on after trach care. So we had to
start putting knee-high socks on her. The regular socks are too easy for her to
pull off. She also started grinding her teeth recently, Tuesday night started making the W sound, and moved up to a size 2 diaper.
Hurricane Dorian was scheduled to hit Florida
on Sunday, September 1st, but then because of the devastation to the
Bahamas, the storm slowed down from 180mph as a Category 5 to about 12mph, and
then also headed East further into the Atlantic Ocean a little bit rather than
staying right along the coast, so we didn’t get much else in Orlando aside from
what seemed like a regular rain storm. It wasn’t even a monsoon as I tend to
call it when it’s down pouring in the summer and I can’t see more than 10 feet
in front of me while driving. It was a regular amount of rain for many hours
throughout the night, starting around 9:30pm on Tuesday, September 3rd.
We were lucky that we didn’t even lose power this time. We only had a quick
blip of power around 5:30am, but it did not affect any of Emma’s medical
machines. However, we did learn that Michael’s car is too long to fit in the
garage and that our generator is working properly again. He had to fix
something with it since it kept idling, but we didn’t need to use that either.
Better safe than sorry!
For some reason I never mentioned Hurricane
Irma from September 2017 on this blog. That one hit harder and our neighbors
had a lot of trees and fence pieces blown down. Emma was only three months old
at that time and the hospital was put on lockdown for about 24 hours. We
visited her for a bit before the lockdown started (7pm I think) and the nurses
were sweet to send a few pictures during the hurricane to make us feel better.
I didn’t worry about anything happening to the hospital, but the next morning
we lost power at our house for 12 hours. My main concern was how to keep the
milk I was hand-pumping cold for her. Michael filled a cooler with ice, so I
kept my little bottles in there until the lockdown was lifted and the nurse
sent us another picture to let us know we could visit again! I love having tiny
baby pictures mixed in with current photos to see how much she has grown!!
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