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| Adorable as ever noogie and all |
On 4/30/13 Noah went into his first surgery. Surprisingly this was his first actual
surgery even though he has been in hospitals and doctor offices every single
month since he was born. Before this
surgery Noah had been sedated twice in the past for his two prior MRIs. This time however he was actually given
anesthesia. I was unsure how he would
react to this and the surgery. I had
anxiety for weeks leading up this surgery and exactly one week later I am still
full of anxiety and fear.
A few months ago I had gone ahead and scheduled an
appointment on my own with an ENT (Ear Nose Throat doc) for Noah. Nobody including his special needs
pediatrician had ever mentioned Noah be seen by such a doctor. I however knew he needed to. Since birth he snored and snorted and always
sounded like he had shallow breathing even though every oxygen monitor he had
ever been hooked up to (12+) had always shown really good levels
(thankfully). As I have mentioned
endlessly Noah to date still in unable to drink liquids while he is awake and I
have always felt like there was/is an underlying reason to think about in
addition to his oral aversions and sensory issues. He always accepted liquid in his mouth using
many forms of cups ect however he just could never actually swallow it without
acting like he was drowning or in pain.
One day I caught a bit of a cold myself and my nose was
completely stuffed and I was trying to drink my morning coffee when I realized
that it was incredibly hard to swallow and breathe at the same time. It dawned on me that this might be what Noah
is also feeling.
The ENT gave Noah an exam and didn’t see much but Noah
started to snort and so he sent us for a throat x-ray. The x-ray showed that Noah’s larynx and his
adenoids were vibrating off each other because of his low tone in his neck and
throat. All this vibration caused his
adenoids to swell very large and were blocking his airway. His tonsils looked normal and of good size so
the ENT decided it best to remove Noah’s adenoids only at this time to open up
his airways and hopefully in time he would be able to drink feeling safe
someday.
Then, during his most recent session at Now I Can, one of
the amazing therapists was watching me give Noah a bottle while he was
asleep. She was very intrigued and
noticed that all of the muscles that would be needed to get one to swallow were
working normally. Then the next day I
tried to give him a bottle while he was awake and she noticed that he was
unable to wrap his upper lip around the bottle nipple.
In all the exams from every single doctor and therapist Noah
has seen not a single one of them noticed that Noah had a very prominent upper
lip tie. I remember once when he was
first getting his upper two teeth I noticed how large and tight this frenulum
seemed and showed it to his general pediatrician who said it was normal. When I was 11 years old and going through the
braces stage I too had to have my upper frenulum clipped so that my upper teeth
would be able to move together and reduce the pencil width gap I then
sported. I put in a call to the ENT and asked if it would be possible
to clip this upper lip tie at the same time he was already under anesthesia for
his adenoidectomy. He agreed and an
extra ten minutes was added onto his surgery time.
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| Ninja jammies!!! |
The morning of his surgery we were to arrive at 6am for
check in. This was a very early start as
I had to wake up around 4:30 to be able to get us both ready and to the
hospital in time. I was the first to
arrive and check in but within literally 15 minutes the entire room was full of
families and small children still in their jammies not knowing they were all
going to be knocked out and have something removed in a couple hours. I felt bad for every child that hour.
After Noah got weighed and dressed in this adorable little
hospital jammies, which made him look like a karate kid, we were then escorted
to the surgery waiting room. I was alone
at this point as my husband had to work and I had told my parents to come up
once he was taken back for surgery.
Thankfully, my sister-n-laws (Noah’s care taker during the day) neighbor
works at this hospital and had come in especially for Noah. This made me feel so special and helped
tremendously with my anxiety and fear.
She walked me though all that was going to happen and took him back for
the surgery herself. While waiting in
the surgery waiting room with my parents she not only called me once but twice
within the 35 minutes surgery to give me updates. I felt like a VIP and was very thankful for
her guidance and help. The surgery
really did only take 35 minutes and that was from knock out time to post
op. I was then called back to see my
poor baby in this dazed and screaming post op state from the surgery and
anesthesia. I felt so bad and then I saw
the blood stains on the sheets and felt even worse for my little man. I could tell his was in so much pain and so
confused.
Our “hospital angel” then led us to the 23 hour overnight
observation area where we had to stay because they wanted to keep an extra
special eye on Noah since he has neurological issues. This was a total blessing in disguise because
there is no way I could have handled Noah at home that first night without an
entire team of nurses and aides there to help us. His lip looked like he had just received a
collagen injection from the frenulum removal and his entire face was just
puffy.
Noah did NOT have a very good recovery. He was so uncomfortable and out of it that he
just screamed and screamed and screamed.
I felt bad for the other kids recovering and having to wake up to blood
curdling screams. Thankfully our Angel
as well as my parents were there to help me “try” to calm him down. They kept him hooked to an IV in his foot and
were able to give him some stronger pain meds that finally helped calm him down
and fall asleep.
The funny part of this entire adventure/horror story is that
Noah has always hated being on his stomach.
Tummy time in our house started in infancy as torture time and then
later on turned into “I’m just going to lay here in protest and not do anything
other than sleep or cry or chew my thumb.”
However, literally the second out of surgery he was flipping wildly from
back to stomach and since then this seems to be his preferred position. All this tummy time has really encouraged him
to put weight on his arms and the one good thing that has happened through all
of this is that Noah is now able to sit in his floor bouncer without the huggabebe pillow and can actually balance himself.
The first night was rough…really rough. Up every 20 minutes and almost a total
refusal to eat or drink which is to be expected. It literally took me 23 hours to get in
enough food and fluid to allow us to leave the hospital and go home instead of
staying another night. In retrospect, I
kind of wish we did spend one additional night there. As soon as I got Noah home, and after two
bags of IV fluids and three doses of loratab, Noah was happy and cooing and
hungry. He ate an almost 300 calorie
meal which never ever happens. Then out of pure exhaustion both he and I took a
long nap on my bed where I slept too long and didn’t wake up before he did to
feed him his “sleep bottle”. As soon as
he woke up everything started to go downhill.
He was thirsty but awake and couldn’t drink anything. He was hungry but overly hungry and wouldn’t
eat anything. He started to cry and
scream and so his throat started to get sore and raspy. He kept banging his face into the floor or
mattress and kept hitting his upper lip which would cause more pain. Every time we tried to sit him up or lay him
on his back he would cry harder like we were poking him with needles or
something. This lasted for two entire
days and nights and both my husband and I were just spent.
I had taken the day of the surgery as well as the following
day off work to be with Noah and my husband took the next day off work to be
with him. We took turns trying to allow
each other to rest when we could but still….we were plain exhausted. On Friday, the next day, we took Noah to his
care givers house but that was not a very good day either. His food intake was going up but his liquid
intake was dwindling further and further.
Feeding Noah while he sleeps is impossible unless he is
sound asleep on his back so that we can position and feed him correctly so that
he does not aspirate. Since he refuses
to sleep on his back since surgery we have had to try and turn him over
covertly and pray he doesn’t wake up.
Prayers were not answered and he has woke up more times than not which
means no bottle…less fluid…and approaching a dehydrated state again.
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| heading out with battle wounds and arm braces |
Fast forward a few days: Totally dehydration now: Made a call into his doctor who rushed us to
the Rapid Treatment Unit at Primary Children’s Hospital for what we like to
call “The Noogie” insertion. When Noah
was just 3 months old he got his first nose feeding tube aka Ng-tube aka
Noogie. We hated it so badly that we
spend every moment weaning him off the stupid thing. We have spent literally 13 months trying to
keep the stupid noogie away. Like a bad
nightmare it was now back in our lives to taunt and torture our whole
family. We had to endure another
overnight stay and I got to watch Noah puke and puke and puke because the first
day of having a noogie is like gagging on a funny straw that has been shoved
down your throat. It was another night
of no sleep and watching Noah try to adapt to another oral issue. Keeping in mind he was only one week post op
from his last surgery. Poor dude.
We have now had the Noogie in our home for exactly 8
days. We have found it to be a love hate
relationship. We hate knowing that Noah
hates it. We hate that it has made him
not eat a single thing by mouth since it was put in. We hate that it gets caught on
everything. We hate having to keep Noahs
arm in a brace to prevent him for yanking it out (which he tries
constantly). We have the process of it
all and the care and management of the adhesives and syringes. However, this is probably the first week
since we weaned off his last noogie where Noah has been well hydrated and we
have seen an increase in energy in him that we just love. We no longer have to struggle to feed him
bottles when he is asleep and can actually let him, as well as us, sleep
uninterrupted. We have been able to get
all medication in him which is nice.
Plus, eat time we do try to feed him orally it is more for practice and
not an anxiety stricken task to force calories into our son. Like I said love/hate.
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| AMT mini-One |
Monday morning we have yet another 1-2 day stay scheduled in
the hospital when Noah will be getting a permanent G-tube placed into his
stomach. We have chosen to go with an
AMT mini-one button with a 14 french size tube.
We will be using both continuous feeds through a pump as well as bolus
feeds through a syringe using gravity to flow the formula into him. Currently we are using Bright Beginnings soy
drink that is 240 calories a can since he has a milk intolerance. However, this is all on our wish list and
things might change mid surgery as they commonly do. G-tube feeding will be new to us and we do
have our hesitations, fears, but also positive outlooks as well. It is the best option for Noah at this time
and though we have fought this since he was an infant I regret not doing it
sooner. I have joined all the tube
feeding networking sites and educated myself to the nth degree about g-tubes
and maintenance.
Monday starts yet another chapter to Noah’s story and
another hospital stay and medical history line to his already too long list. Praying that for the rest of this summer (and
year) we will be able to stay out of the hospital, away from IV fluids, and
miles from the ER. I feel prepared and
ready and I have a really good feeling about this surgery and what will come
out of it. I am not going in with
irrational expectations like I did with his first Ng tube. I will take it a day at a time and work hard
to get Noah to eat orally as well as start to drink orally while awake. Already with the noogie I feel a weight
lifted off my shoulders knowing he is fed, hydrated, and is getting his
meds. The g tube which I might have to now
call his “goobie” will allow Noah to have his throat and cheek back and once
healed will be a discrete reminder to us that Noah is healthy.
Here is a link to an instruction Handbook about G-tube options and care that was given to us at our G-tube assessment appointment.
