Note: I started writing
this Thursday night, continued Sunday morning, FINISHED Monday Morning ;-P
Sometimes I question how many times we can go through
troubles and heartache like this. Every year I dread spring. We get through
winter bugs like nobody’s business, but come the change of season no matter
what we do, minus all of us living in a bubble, shit hits the fan. And kind of
literal this time, which we were not prepared for. Riley has thrown lots of
curveballs in his 4 ½ years, with random symptoms of his underlying unknown
degenerative neuromuscular disease, but a GI issue gone crazy….to land all of
us in the hospital for over three weeks with not much light at the end of the
tunnel…who knew? Leave it to this kid, nothing is normal and straight forward.
(Packing up at the house...waiting in the ED to be admitted...hanging out with an upset tummy...getting a special CT scan to check his GI tract...)
The last time I sat down in wrote, I was bored out of my
mind during a long scheduled mundane appointment at Children’s. Tonight, I’m
home sitting comfy in my green “movie chair” in the family room with Blue
Bloods in the background, laundry running, Sadie curled at my feet, freshly
made taco makings wafting through my kitchen…while both my boys are hopefully
either both asleep, or our kiddo comfy and tucked in and papa bear headed that
way, with a much quieter night than the past few. The dreaded and untrusted RT
showed her face again in our room tonight, and papa bear is making sure she’s
taken care of, in a more respectable manner than I would if I was there
tonight…..
(Post endo & colonoscopy, where he failed to make it through on sedation w/just BiPAP, as I explained to docs that was the probability of happening; and with his puppy from his buddies and teachers at school, and Super Grover of course)
Tonight, I write to give updates on our past three-week 2018
spring stay at Children’s. Not everyone has FB for my almost daily-updates, and
being here and dealing with everything, individual updates can be daunting and
exhausting sometimes. So, I write. Good thing I like to write. I get to voice
my opinions and mama bear feelings.
Riley has been having a hard time tolerating his feeds
(strictly gtube fed through his tummy) for the past few months. Nothing super
specific, or super concerning, just the occasional irritability and extra gas,
which gradually got worse. We thought the increase correlated to the change in
his caloric intake in his ketogenic diet recipe (as he gained a random 4+lbs at
the end of last year). Changes in his diet usually take a week or two of
getting used to, but get better. He didn’t. It got to the point of him still
being pissed with running each feed less than half what he’s use to. St.
Patrick’s weekend was the tipping point. Bit of TMI, but he started having a
little blood clots in his diapers, which quickly graduated to a lot of blood,
and that was the last call. In to the ED we went the day after our St. Pat’s
party, ugh….knowing we’d probably be admitted, so had all of our bags in tow. Where
hoping for maybe a few days with something “minor”. I don’t think this kid
knows the meaning of the word.
(Hanging out Easter weekend, post first-extubation)
We are currently on day 22 into our 2018 stay. With at least
a week, plus, to go. I’m done trying to predict when we’ll go home, because
when I do, some other “shit” hits the fan and we back track. Last week’s shit
was problems with his secretions. They suddenly got really thick and hard for
him to move them, and hard for anyone to pull out of him. So, mama bear ordered
a chest x-ray and respiratory viral panel. Everything checked out normal. Next
step was to take away his glycopprolate medication that he’s on to help the
amount of secretions (that med has a fine line in dosing to either help
secretion amount, or make them thick, if too much is given). Thankfully his
secretions seem to be back to normal, and he’s back on his normal dosing of
glycopprolate to help with the amount, especially since being on his BiPAP just
blows them around constantly.
(Hanging out irritated with the breathing tube, happy without it on BiPAP)
Now that we have control of this issue…it’s become obvious
we might have an even bigger one on our hands. His airway. This is where I want
to yell, scream, curse and cry. It terrifies me, I can’t and will not bring him
home until the issue is figured out and resolved, somehow. I won’t risk him
having some big event at home, where his airway somehow collapses. Since he was
extubated a week and a half ago, he’s been making little “humming” sounds. We
thought at first it was just his voice coming back, and were more focused on
getting his secretions under control. But over the past few days his secretions
have been more normal, and the humming has become obvious it was with every
exhale, so not purposeful. ENT did a bedside scope, and sure enough showed the
vocal chords closing with each exhale, creating the sound. They weren’t overly
concerned about it, and there didn’t seem to be any upper airway (above the
chords) damage or irritation. Now of course yesterday (Sunday) he started making
kind of a wheezing sound with inhales on top of the exhale humming. He didn’t
look very comfy all day, little higher heart rate, hard time getting coughs to
move above his chest, and on BiPAP the whole time. I knew in my gut something
wasn’t, and hasn’t, been right. Slowly working with docs to come up with
noninvasive ideas to try and help, but he decided to show everyone how bad off
he was, and quick.
(First momma snuggles in like a two and half weeks)
Shortly after his 4pm respiratory treatment, he started struggling
more. RT got out really really thick secretions (very impressive for them and
me, for what we all know what “normal thick” looks like) out of him after cough
assist. And he started having oxygen issues, trying to recover from having that
junk pulled out of him. He quickly spiraled not being able to take any breaths,
and tanked hard and fast…having a staff assist called (pretty equivalent to a
code blue). I watched in tears as doctors raced to save him. I’ve experienced him
being “bagged” more than I care to even try and count, and rescued like this a
fair amount of times too, either due to respiratory or seizure problems. But I’ve
only seen & been terrified of losing him in a situation like this twice
before (once due to a massive seizure and once after trying to extubate and him
immediately failing).
What seemed like hours, but reality probably not more than a
minute, they had his oxygen and heart rate coming back up with the bag, never
needing chest compressions. Thank god, don’t need broken ribs on top of all
this. Once he was stable with the bag breathing for him, anesthesia was called
(and I made sure it was not the same woman who did the harsh first intubation
causing him to lose 8 teeth, and possibly doing god knows what now to his
airway). They looked with a camera prior to trying to get the tube in and found
that his vocal chords where closed. We had several different sizes of tubing to
try, but if the doc couldn’t get the tube through the chords, our next option
would have been a bedside trach. Godbless that doc for being able to somehow
slip the tube through his vocal chords. After the hour plus of chaos, hooking
him up to the vent and cleaning up, we were left with a drugged and tired boy.
But still here and getting the air, he needs.
This morning he’s a little stoned on some sedation
medication to keep him comfortable, but has opened his eyes frequently and even
squeaked out a few smiles for both myself and Chris. Just finished with rounds,
and doctors have his brain MRI set up for 7pm today. We were insistent on
having it done on a particular higher technology machine, to keep his pictures
consistent with all his previous ones. The one time it was done on a lower
grade machine, his disease appeared to be more progressive than it actually
was/is. I’m sure we won’t have results on the MRI until sometime tomorrow,
hopefully at least by morning rounds. Depending on what it says, the next step
would be for ENT to take him into the operating room to safely (as possible)
evaluate his airway. Which requires them pulling the breathing tube out, so
they can see exactly what his vocal chords do, along with the rest of the airway.
Feels certainly risky to us, but it’s the only way to evaluate and in the
safest environment as possible. Doc are confident if the MRI doesn’t give us a
clear answer on what/why this happened yesterday, and ENT goes in, that they
should have no problem getting the breathing tube back in, as it went in with
ease yesterday bedside.
(And it's back in...)
We are all so incredibly blessed with amazing family,
friends, co-workers, and neighbors. We came in for what seemed like a common issue,
might be in a few days. Now day 23, 2nd round on the vent, and both
of us not exactly sure what day it is….it’s spring right?! ;-P Chris has been
able to go out to work most days, and manage his guys from here on days like
today. I’m blessed to have amazing women that I work with pick up some slack
where I need it, and be able to remotely do things (which at times is a nice
distraction vs binging Netflix) from here, that I would normally be doing from
home anyway. If we didn’t have understanding and compassion from work, good
lord who knows what stress levels would be like. And friends and family members
jumping in to give us breaks, offer things up, and show their love and support
helps get us through each day.
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