For 10 days now, we have been on an adventure we never
dreamed we would be on. Sounds familiar,
huh? It all started last Thursday when
Finn started presenting cold like symptoms.
On Friday, he was super clingy, and definitely on a downward
spiral. Nana the Wonder Sitter greeted me
at the back door when I got home from work by saying “It’s going to be a long
weekend. Finn is VERY clingy!” She had
no idea how prophetic those words would turn out to be.
First off, a little education.
Babies
born as early as Finn are really
disadvantaged as far as lung function goes, and it takes a long time for them
to get caught up.
The image below shows
what baby lungs look like at 8 weeks gestation, 16 weeks gestation, 24 weeks gestation (about where Finn was born) and full term. Finn was born at 26 weeks, spent 10 weeks on a ventilator
(2 weeks on an oscillator), and has chronic lung disease.
This means he is VERY susceptible to upper
respiratory infections, pneumonia, and RSV.
And, a little about RSV (via marchofdimes.com)
Respiratory syncytial virus (RSV)
commonly causes infection in childhood. RSV is very contagious. Almost all
babies get it before the age of 2. Many babies (and most older children) get
only a cold from RSV.
Some babies with RSV develop potentially serious lower respiratory infections.
Examples are:
- Bronchiolitis, an infection of the small breathing
tubes in the lungs
- Pneumonia
These infections are especially
dangerous in babies who were born prematurely, have lung or heart problems, or
have certain other chronic illnesses. Your baby can get RSV at any time of
year, but it is most common from October to March.
Symptoms of RSV usually last between 8-15 days. Most babies with RSV do not
become seriously ill. But a few become very sick. They may need to be treated
in the hospital with oxygen. In some cases, the baby will need bronchodilators
(drugs that help open up breathing tubes) and antiviral drugs.
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Now, our time line of how we got to be in the hospital for 5
nights (and counting…)
Thursday, January 31:
Finn starts having cold-like symptoms
Friday, February 1: Nana the Wonder Sitter declares we are
in for a long weekend as Finn is not feeling well and is being very clingy
Saturday, February 2: After being up a lot over night with
Finn, we decided our baby was sick. He
was laboring to breathe a little bit, and we didn’t want it to get worse or let
it go any longer, so we were off to our favorite local urgent care – and our
favorite PA was on duty! RSV, flu and
strep swabs all came back negative; after examination it was determined that he
had a virus, perhaps an upper respiratory infection (Bronchiolitis?) and to watch for it to get
worse. No meds, no specific follow up
required. He did puke and cause Britt to
miss Jake’s basketball game, but we had no idea what we were really up against!
Sunday, February 3: Another long, tiring, stressful night had
passed. We had been giving breathing
treatments at home every 4 hours for a solid day now. Early
in the morning, we decided we needed more treatment. After having a bad experience at our local ER
earlier in the fall with one of the Big Dream Weavers, we chose to head to
Oklahoma City for help for our baby. By
11:00am we were in the Mercy ER – chosen simply because he was born there and
they already had records for him. We
spent about 4 hours there with x-rays, tests (flu and RSV again negative), and
had 2 breathing treatments , IV fluids, oral steroids and antibiotics. We were told the diagnosis was dehydration
and pneumonia and to follow up with our pediatrician ASAP. The middle left lung was the worst spot for
the infection. We left there with
prescriptions for oral steroids, oral antibiotics, and to continue the
breathing treatments every 4 hours, or as often as 2 hours if needed.
Monday, February 4: After a slightly better night, we were
on the phone by 8:00 am to schedule an appointment with our pediatrician. At our 11:15am appointment, she examined him
and agreed with the Mercy ER diagnosis.
Told us to use the prescribed meds, keep up the breathing treatments,
and to call if it got worse. He wasn’t eating or drinking very well, but he
took his meds like a champ! But, then he
puked all over dad again!
Tuesday, February 5: Overnight was one of the worst we have
ever experienced since he was tiny and on monitors and oxygen. By 5:00 am Finn was in distress, and so was
dad. We needed HELP for our baby! After much debate and discussion, we decided
to go to our local ER as our other kids still needed to go to school that day,
and we already had a diagnosis just needed more help. Finn and Britt went on in while I waited for
back up for the big kids at the house. They
put Finn on “flow by” (where he doesn’t actually wear the mask, just blows it
into his face/nose) oxygen support in the ER as his O2 saturation levels were
in the high 70’s. They also repeated the
RSV swab (which had to be done twice since the tech doing it DROPPED the first
one!) – Still negative. A portable chest
x-ray was taken as well. Started an IV with
minimal complications, but they were unable to do the required blood draws –
from 2 different sites. So, 2 nurses (one
with NO compassion that really ticked Britt off!) and then 3 different lab
technicians came in and made their attempts.
I think he ended up with about 8 sticks!
Within 2 hours, they had called our pediatrician and we had been
admitted. We were in our hospital room
by 9:30am.
We had seen our pediatrician right before we were moved to
our room. She said they would continue
with monitoring and breathing treatments and we settled in for the day. About 7:30pm, Britt came back to the hospital
after going to basketball practice with Jake.
When he arrived, the room was a bit chaotic. I was holding Finn in the recliner, trying to
keep the flow-by oxygen going, because his O2 levels were dipping pretty
badly. They had turned up the flow of
the oxygen to about 5 Liters (it had been on 1 or 2 most of the day), but Finn
was being very resistant and not interested at all in sitting still. When Britt got there, the Respiratory
Therapist (RT) was in the room with us, and I immediately handed Finn to Britt
and asked him to help. Over the next few
minutes, the RT continued to turn the flow of oxygen up - clear up to 15! – And
it was blowing in Finn’s face like a blow drier! He was NOT tolerating it AT ALL! And we as parents were miserable with the situation. We asked what else we could do, and the RT
suggested nasal cannula. They had
attempted that in the ER, but were unsuccessful – babies don’t like the
cannula! So, after one much harried
attempt, the RT threw the cannula on the bed, threw is hands up in frustration,
and told my husband “My hands are tied!
There is nothing else I can do!” This did not set well with Britt. As “politely” as possible Britt told the RT
to get out. We were told they would call
our pediatrician, to which we said,”YES! PLEASE!” She was there within 30 minutes, and after
several emotional conversations (Special Thanks to my Sister-in-law for helping
me hold it together), by 8:30pm we had made the decision to call for a
transfer. He was not responding as we
expected, and we needed more help.
We chose the
Children’s Hospital at OU Medical Center
because we KNEW they would know how to treat a baby – especially one born at 26
weeks with who had chronic lung disease and probable pneumonia.
It took a couple of hours to get it all
arranged and taken care of, but we were in the ambulance by 10:40pm and in our
room in Oklahoma City by Midnight.
I
rode in the ambulance with Finn while Britt followed in our van.
Wednesday, February 6- Children’s Hospital. Upon arrival, they had a nasal cannula on the
baby with a flow of 2L oxygen, had run an RSV swab, IV fluids continued, had us
settled in to the room, and an orientation to the hospital and the floor within
30 minutes. AWESOME! There was nothing else to do immediately
since he had antibiotics in Stillwater.
He had breathing treatments every 4 hours, and a chest X-ray the next
morning. When the Doctor came by to
examine Finn and fill us in, we were told the RSV test was positive, he has a collapsed
spot on his left lung, and he had POSSIBLE pneumonia. Only “possible” as they couldn’t tell since
his lungs are so diseased. They would
continue with oxygen support, breathing treatments, and do a follow up x-ray in
2 days to evaluate the pneumonia. They
also continued with antibiotics in case he did have the pneumonia infection. By this point Finn was miserably sick –
hacking and coughing and constantly struggling to breathe. We knew we were in for a haul, but we didn’t
know how long. (Side bar story – Britt went
back to Stillwater to get clothes and kiss the kids. When he got tour house, the power was off.
Upon further investigations, it was discovered that the City had turn off our
power at 2701 by accident – they were supposed to turn it off at 1701! OOPS!
At least they got it back on quickly!)
Thursday, February 7- Children’s Hospital. The first of many long days at Finn’s
bedside. The goal for the day was to
wean his oxygen support, and to get Finn back to eating and drinking to get off
the IV fluids. The previous overnight
was not good AT ALL! He had a terrible
time keeping his O2 Sats up! His little
body was just exhausted. We had the flow
back up to 3L at one point in the small hours of the morning. We had called on all our prayer warriors and
declared that Finn would overcome this obstacle! It worked! He had a GREAT breakfast, played with his
toys, got the flow back down to 1L, and had a great morning nap! He was also on ½ the amount of IV fluid that
we had started out on. We felt this was
GREAT progress, even thought we were back up to 1L flow when he was
sleeping. He drank a while sippy cup of milk
and ate his first few bites of food in days!
GREAT progress – and we were told we would be there one, possibly 2 more
nights.
Friday, February 8 – Children’s Hospital. Another day of
monitoring and pushing Finn to get better.
Overnight was better, but he
still struggled from 3am-5am. We were on
.5L when the day started on Friday, and we were completely off the IV
fluids. YAY! He was still getting breathing treatments as
needed, but they were fewer and further between. They were now doing CPT – where they bang on
his chest for several minutes on the front and back with a special
instrument. They do that every 4 hours
throughout the day and night. That
afternoon, one of our doctors told us OPTIMISTICALLY we would go home
Sunday. This was a little disappointing,
but we want Finn to be FULLY recovered before we take him home. Chest x-ray
this morning – the doctor reported that he could not sure out the pneumonia so
we would finish out the course of antibiotics.
Friday evening, Britt and I went
to the Thunder NBA game with our family while Nana came to hang out with Finn. He
was DEFINITELY feeling better today – even if the x-rays and numbers weren’t
showing it. He had turned his crib into
a jungle gym and was all over the place!
Saturday, February 9 – Children’s Hospital. Had a GREAT over night! Britt slept all night, and Finn and I only
woke up when nurses or RT came in. He
ripped the cannula off his face this morning, and it took Britt, me and 2
nurses to get it back on – he is feeling MUCH better! His chest is sounding clearer every time they
check, and we were told we might get to try a room air check this
afternoon. His O2 flow hovered between
.5 and .25 all day. Since he is doing
better, it was a quiet day with fewer people in and out. Makes for a LONG day. I did, however, get to be christened with
Finn puke. And Britt had taken all my
laundry home to wash it, so I had no pants to change into. Thanks to some dear friends for running to Wal-Mart
for reinforcements! YAY for sweat pants! We were hopeful this would be our last night!
Sunday, February 10 – Children’s Hospital. EXCELLENT overnight! Finn slept right through all his overnight assessments
and treatments! We tried a room air
test, but his O2 sats dropped quickly, so he failed. That means we will be here Sunday night as
well. The only remaining goal is to get
off the oxygen! I was pretty disappointed in this news, so I
went home to Stillwater to see my momma and to love on my kids. I needed the break. Today, Finn’s O2 flow was at .12 most of the
day – up to .25 for treatments and one nap.
SO CLOSE! He is holding on to
that oxygen by a skinny little thread!
One more night???
This has become our theme song over the past week. Take a listen - it has a powerful message!
Stay tuned! I’m sure
you will hear it all over Oklahoma as I scream and shout when they tell me we
can go home!!!
