I don’t know that Mason could tell you what his first memory
is, or even how far back he can remember. I am certain however that he can’t
remember a time he slept without wearing his oxygen, a time before his
diagnosis. I can tell you though; it’s been over 2 years, pretty much all his
life. I remember how I felt when they told me my baby boy would
need to wear oxygen anytime he was sleeping. My little chubby bubby now seemed
so fragile. Next thing I know I have a huge oxygen concentrator and all that
goes with it in my son’s nursery. His sweet simple blue nursery now housed
medical equipment. It seems like such a
small thing to do really. You put the cannula in his nose, you tape it to his
cheeks so it stays in place, the cannula tubing goes into the longer tubing
that attaches to the oxygen machine, you turn it on. Simple. NOT!
That lovely oxygen machine makes
the loudest beep known to mankind when you turn it on. If you rock your sweet
boy to sleep and then turn it on it will be sure to startle him into total
alertness instantly. Then the constant hum of the machine, which actually
sounds like white noise, will be bothersome to him and you on the monitor at
first. Of course you also have to have to portable oxygen to take anytime you
aren’t at home and he will be sleeping. When traveling with that don’t forget
the extra battery, charger, connectors, ext. Sleeping is now never simple.
Then there’s the tape. Do you have
any idea how many types of medical tape there are out there? Some tapes work so well that when you take
them off they take some sweet little baby cheek with it. So now the next night
you have to find a way to tape it down around the raw patches from the night
before. Some tapes just don’t come off period. I literally had to debate if
it’s worse to leave the tape on or use some kind of rubbing alcohol to try and
remove it. Of course we eventually found the perfect tape to go on and off easy
and leave his cheeks as chubby and intact as ever! Tape crisis over......until
they start moving. When they lay still on their backs the cannula pretty much
just sits in the nose. When he starts moving his head side to side and rolling
around you have to be more strategic about tape placement. Turns out taping half way between the nose
and the ears at a slight upward angle is just perfect!
Now that it’s taped to his face he
has about 10 feet of tubing connecting him to his oxygen machine. The tubing
never bothered Mason, he’d roll around in it and sleep just fine. He’d wake up
with tubing around his belly 4 times and his neck twice. Nothing lets a momma
get good nights sleep like the vision of her son being strangled by the very
tubing carrying the oxygen he needs to thrive. We tucked it down the back of
his pajama top, thru his pants, anything we could think of. Thankfully most
mornings he wakes up tangle free but even now it takes my breath away a little
when I see that damn tubing around my boy like a boa constrictor. (side note:
if you know me you know I’m terrified of snakes so this makes it doubly as
bad!)
Although it was a learning process
for everyone involved Mason took it all in stride. I joke at all the
“struggles” we had in the beginning and I think that’s only natural when you
are learning something new. Mason never seemed to notice, never seemed to mind,
he just smiled and went with the flow. Mason has never known what it’s like to
sleep without a cannula in his nose and tubing restricting him to his bed and
about a 15-foot radius. He has never complained, never seemed to think he was
different or like it made him sad. Mason is such an amazingly strong, young
boy!
Mason did a sleep study to see how
his oxygen saturations where doing while he slept. Most NEHI kiddos typically
have less O2 needs the older and stronger they become. The study left us all
eagerly anticipating the results. For Mason, this would be life-changing news.
The study showed that Mason had a few moments of low oxygen levels but was
consistently high enough that he could sleep without oxygen. Let me say that
again, or maybe scream that, MASON CAN SLEEP WITHOUT OXYGEN!!!!!!!!!!! I almost
broke into tears when the nurse called to tell me. Mason is strong, I’ve always
known that, but now his lungs are getting stronger too; I’ve always prayed for that.
Mason will still have times of sickness or other struggles where he will need
to wear it again but while “healthy” he can sleep oxygen free! This is a rare
moment for me because I truly feel like I cannot put into words how this makes
me feel. So what I want to do is share with all of you the moment we told
Mason. This moment is a moment I will absolutely cherish for the rest of my
life. The night this video was taken
Mason went to sleep with nothing but a smile on his face. Our Journey with
Mason is far from over; he will always have a lung disease and therefore always
have struggles. For now I’m taking this as a win, a giant step, a positive move
toward the future. I hope you all will enjoy sharing in this moment with us!
