This story has a happy ending. I thought I should start with that so that you didn't
worry about that through the whole reading.
I want to type this up tonight so that I can then try to forget the whole experience.
It's important to tell the story because it's something that can happen when a baby
has a big head, or is still too little to sit up. But it's not something that I
want to have to think about again in detail in a few days to write about it.
This weekend we received another miracle for Owen. On Saturday he ate his lunch
just fine and then snuggled up with me and fell asleep for a nap. He was healthy and
happy. After he fell asleep I put him in his crib, grabbed the baby monitor and headed
outside to do some work in the garden while he napped. After only about 30-45 minutes
I thought I heard him stirring on the monitor. This seemed odd because he usually
sleeps for at least an hour and a half, and often more than two hours. But I decided to
go in and check on him anyway. Figuring that my work time was done, I went and put the
wheelbarrow I had been using away because it was supposed to rain later that day.
I headed back into the house and went up to check on Owen. It was clear as soon as
I saw him that something was wrong. His color wasn't right, he was somewhat blue,
he wasn't breathing right, his heart was pounding and his head was in a pool of vomit.
I picked him up and he was limp. I tried to put his head over my shoulder in the
burping position to let him cough and he immediately threw up again and sucked some
of it back in when trying to breath. I laid him down on his left side, like you
would for a person that was drowning and gave him the baby mini-heimlich and a whole
bunch of stuff came out. I couldn't tell if he was just throwing up again or if he had
managed to clear out his airway a bit. Then I sat him up again and he did cough a few
times. But his breathing still wasn't right. It was 5 - 10 seconds between each
breath and it was a gasp each time. I put him on the floor on his side again and
called my husband on the intercom to tell him that something was wrong with Owen.
When my husband came in, I had Owen stretched out on the floor on his side. He was
still breathing on his own, but still very slowly in gasps. We brought him downstairs
and kept putting him up on our shoulders to let him cough and then putting him on
his side on his changing table to keep his airway straight. His pupils were responsive,
but we still couldn't get him to wake up and he had only minimally moved his arm once
on his own. His arms and legs just flopped when we let them go.
He had thrown up a few more times
and he just wasn't improving so I called 911. It's a volunteer rescue squad, and when
my brother recently had a bad accident with a compound leg fracture, he had to wait for
over an hour for them to come. So after 10 minutes I called them back to see if they
were on their way, or we were going to get in the car. Thankfully they arrived within
about 15 minutes. My brother only lives about 30 seconds away on the same
road as us and he came up at light speed to take our daughter while we
went to the hospital with Owen.
They took him to the nearest hospital, which we knew couldn't handle pediatric cases
long term, but had the benefit of being close. I rode with Owen in the ambulance and
on the way there Owen still would not
wake up and only gave minimal responses to stimulation. Once we were in the ambulance
they put an oxygen mask near his face to help him breathe. They filled out some
paperwork so that they could get the right things set up at the hospital before we
got there. Then they put a pulse-ox meter on his to measure his oxygen level. His
oxygen was only at 79 percent, so the EMT started bagging the oxygen instead.
All the way to the hospital he never woke up.
When we arrived at the hospital I carried him in to the emergency room. He did
wimper a little bit when I brought him out into the sun, which made me feel a little
bit better. The emergency room people at Lewis-Gale hospital were amazing. They
were ready and waiting in the room when we got there. Within seconds they had the
oxygen back going and within minutes they had the breathing tube (aka ventilator)
inserted and running. Doctors were taking blood samples, administering drugs and
doing all sorts of things. A chest x-ray was done to see if there was anything in
his lungs. They suctioned out his trachea and removed a bunch of stuff that
was blocking his airway. In a lull I went over and tried to touch Owen under the
mass of blankets they had on him. He had started shaking and they announced that his
body temperature was 95.3. The doctor paused to say, "I'm sure I don't have to
tell you that we have one very sick boy."
The most hopeful moment we had at this time was when they tried to put the breathing tube
in and Owen started to fight them. They ended up needing to sedate him in order to
get the tube in. We didn't know whether to root for him to fight knowing that it meant
that he was alive and had enough brain power to realize that he didn't like what was
happening, or to wish that he'd calm down so that they could get the tube in.
Once they had his oxygen levels stabilized they wheeled
him out of the room to do a CT scan to see if it was a shunt problem.
The people at Lewis-Gale were awesome and the stop there probably saved his life,
but they are not equipped for critical care of small children. So it was back onto
an ambulance to be transferred to Carilion Roanoke Memorial Hospital which has a
Children's Hospital with a PICU (Pediatric Intensive Care Unit). It's about 20 minutes
between the two hospitals - unless you're in an ambulance doing 80mph. My husband
rode with Owen in the ambulance this time and somehow I managed to beat them there
when I drove over to meet them. Again they had everything ready and waiting. This
was the same team that was responsible for transferring me and Owen down to Duke
while I was in labor and they are amazing.
They kicked my husband and I out when they got there because there wasn't enough room in Owen's
room for the transport team and the new team. We had to wait until the transport guys
left to go in and see him. That was a very long 10 minutes. When we went in Owen
was resting comfortably and his color was much better. The ventilator was still doing
most of his breathing though, he wasn't assisting very much himself. The doctor came in
and got some history from us, but had to leave as another critical case was coming in
and Owen was stable. Roanoke Memorial is the only trauma center and PICU and NICU
for a pretty wide radius and so they are very busy. The doctor asked for Owen's most
recent CT scan, which I had forgotten to grab and then said he'd be back when the
new kid was stable. I had to call my brother and ask him to bring the scans for us.
So we waited with Owen. More people came and asked us more questions. Does he have
a history of seizures - No. What is his normal mental status, is he normally this
unresponsive - No, he's normally quite lively. Does he have a history of seizures -
No Again.
Eventually the doctor came back and this is when things started looking up. He
showed us Owen's CT scan and it was clear that his shunt was still working. Then we
asked about the thing that was worrying us the most. What were the chances of brain
damage given how poorly he was breathing for so long? The doctor said that the fact that
Owen's heart was pounding was a great sign. His body was distributing what oxygen it
had and was making the most of what breaths he was taking. They had also taken a blood sample
as soon as we had gotten to Lewis-Gale. They were looking for something called
respitory acidosis. When a person is not getting enough oxygen the amount of carbon
dioxide begins to build up in their system and then starts to dissolve in the bloodstream.
When this happens the pH of the blood gets lower and lower. This is not a condition that
is resolved quickly with a few good breaths. Had Owen's body been seriously
deprived of oxygen for any length of time, this test, known as a blood gas test, would
have shown a decrease in the pH of his blood. Thankfully the doctor said that the
pH in the tests taken both at Lewis-Gale and at Roanoke Memorial were fine. So those
breaths every few seconds were enough. He felt that brain damage due to a lack of
oxygen was unlikely. I think we could have flown on clouds after getting that news.
Next our attention was put on the CT scans that my brother had zoomed to the hospital.
It was pretty clear that they were about the same as the previous scans and so a shunt
failure was ruled out. We didn't think that was the case anyway, his fontanelle was
still sinking when upright and shunt failures are generally much more gradual than this.
OK, no brain damage and shunt is functioning, now we move onto what the focus will be
for the next two days. Because Owen was shaking after we got to the first hospital
they started thinking it was a seizure. Children with hydrocephalus are at a high
risk for seizures. We know this. But we also know that they generally start by the
time the child is six months old (according to Owen's neurologist) and Owen had never
had a seizure. It is possible for them to start at any time though, so it wasn't
out of the question. Repeatedly we were asked if he had a history of seizures and
then asked again and again if he was stiff or twitching when I found him. No, he
was a rag doll when I found him with no movement at all.
This whole thing started about 3:00 PM. By the time he was stable and resting
at Roanoke Memorial it was about 6:30 PM. Whew! Every time I looked at a clock I
was shocked. I wasn't sure if I was shocked that it was so late or that it was so
early. Time was just really munged up. My Mom and Dad live in New York and had their
bags packed just in case we were going to be in the hospital for a prolonged period.
Prayers had been said, said again, then repeated frantically. By this time we knew
that our prayers (and those of our family and friends) had been answered. Owen
was going to be OK. But we still hadn't seen him wake up and respond to us and
until then we were going to keep on praying.
As the hours went by the nurse taught us how to read the monitor on the ventilator.
A purple line at the beginning of the curve meant a breath that Owen initiated, a blue
one meant one that the ventilator took entirely for him. More and more breaths started
having purple lines and his body temperature had come back up to normal. I called his
sister and told her that her brother was doing much better. In a stroke of genius my
sister-in-law had thought to call our neighbor who has a daughter that is only a month
younger than Owen's sister Sammy. She came over to play and distract Sammy from worrying
about her brother. That was about 8:30pm. By this time the doctor had come back in
and saw that Owen was initiating most of his breaths on his own. So he turned down
the rate on the ventilator to see if Owen could pick up breathing on his own. He
was able to do so and within about an hour the doctor said that whenever Owen woke up
they could take the breathing tube out. Owen was resting comfortably, so we just
let him sleep.
Shortly after 10:00pm he started to wake up and immediately started to try and get
the tube out. So they obliged him and took the tube out for him. His first breaths
were somewhat labored and fast, but his oxygen levels never dropped. He was able to sit
in my lap for a while and his breathing became more and more sure. He was very fussy though
and they said that we could try feeding him a bottle. They started out trying Pedialite
which he just pushed away. Then they tried apple juice and he wouldn't have any of that.
So we said that what he really wanted was a fruit yogurt drink that he just loves.
That's not usually on the menu right after sedation, but they couldn't get him to drink
anything else (which is normal, he's picky about his drinks) so they let us give it a
try. He drank down the whole thing. He would have taken more, but we thought we
should stop at one to see how well it stayed down. He did look at us and he was trying
to reach out and grab the ID tags on the nurse and held a toy. He was pretty
groggy though and pretty soon he went back to sleep. At this point we called the
grandparents to tell them the good news that the breathing tube was out and
then
we tried to get some sleep ourselves.
Owen slept from about 12:30am to 5:30am, when he woke up very hungry. He drank three
bottles of yogurt drink and then ate a little bit of solid food. He played with more
toys and was more Owen-like. The problem was that they had an IV in his left arm and
he wasn't happy about that. He couldn't easily hold his own bottle, he couldn't manipulate
his toys and worst of all, he couldn't suck on his left index finger. Without his
"comfort finger" there was no keeping him calm. The IV wasn't actually in use. They
had not been able to get an IV in his arm originally, so they had put one in the
big vein that goes down the side of his head. That was the IV that they were actually
using to put in fluids. The nurse got permission to remove the IV in his arm and then
Owen's mood improved considerably. He was able to play and to suck on his finger and
he was content.
At 10:00am (Sunday now), they came in to do an EEG to see if there was any seizure
activity. We were to find out later that if a person has a seizure it takes some
time for the brain to "calm down". Since the EEG was taken within 24 hours it
should have shown unusual activity if a seizure had occurred. The problem was
that the pediatric neurologist isn't on call on the weekend. So even though the EEG
had been done, it wasn't going to be read until Monday and possibly not until
Monday evening when the neurologist finished his normal office hours. Luckily the
neurologist is the guy that we have been taking Owen to every 6 months just to keep
him familiar with Owen. Unluckily they would not release Owen from the hospital until
the EEG had been read.
After the EEG Owen's Aunt and Uncle came by with his sister. She was happy to see him
and see that he was doing well. She's only five and a half, but she loves her brother
dearly and worries about him endlessly when things aren't going quite right. Sammy
stayed with us for the rest of the afternoon until Daddy went home with her. Mommy
spent the night with Owen in the hospital.
The night with Owen went fairly well. They had a few minutes when they thought his
temperature might be too low, but the doctor came in and felt his hands and feet and
said that he was fine. They took his temperature again an hour or so later and
it was fine. There was some confusion for a little while as they tried to figure out
why his pulse-ox meter wasn't showing up on the monitors at the nurse's station.
But other than that he slept through until 4:30am. I snuggled with him for a bit and
he went back to sleep on and off until 7:00am.
So it's now Monday morning. Owen is definitely more his usual self, but he was also
very unhappy with being at the hospital and being poked at. We walked him around and
around in the stoller, waiting for the word from the neurologist. The resident this
morning took pity on us and called the neurologist and got him to look at the
EEG in between patients. He also scared us because he started out asking again
if this was like Owen's previous seizures. When I said that Owen had never had a seizure
before he seemed a bit surprised. He said that from the notes that he had read he
had been led to believe that Owen had had seizures in the past. He also seemed to be
under the impression that Owen was shaking when I found him, not 45 minutes later
at the hospital after his body temperature plummetted. After we cleared that up he
made an obvious effort to get in touch with the neurologist because he felt that it
probably wasn't a seizure and that we shouldn't be waiting for nothing.
So at 2:00pm we got the news that we were waiting for. The EEG was clean with no
sign of seizure activity. He had simply thrown up and because he can't lift his
head he wasn't able to get his face clear of the mess.
**Note - I feel now, a little over three
years later, that I need to go back and make a note here. Later
experience would show us that this WAS a seizure and that this
pattern of throwing up and then having trouble breathing
was the pattern that he would repeat over and over again as the
years progressed. We have learned that seizures come in all
shapes and sizes.**
We were cleared to leave the hospital. When we got
Owen home he was a little fussy at first, but then he started playing with his own
toys and rolling around on his own floor. He laughed and laughed and smiled.
All through the evening he found joy in every toy that he rediscovered. I gave him
a bath to clean him up from everything that was done at the hospital and he laughed
and splashed and made a glorious mess with the water.
And then you remember why this is all worth it and these pictures that I
took tonight say it all:
Other than that we are waiting for an MRI on April 29th to determine if he has
the appropriate nerve endings and a properly shaped cochlea for a cochlear implant.
Thanks to all who helped us through this weekend with prayers, good wishes and
logistical support. We couldn't have made it without you.
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