The blink of an eye – that’s all it takes to turn a mundane Monday night into a parents’ worst nightmare. One minute Connor was completely fine being wild and crazy before bed with his siblings, and the next I’m woken up out of a dead sleep at 11:15 p.m. to him shaking with a high fever and mumbling nonsense in his sleep. At first we just assumed it was the fever “talking”, but after a very long and uncomfortable night that turned into the wee hours of the morning, we knew something was very very wrong, and we needed to get our sweet boy some medical attention as soon as possible.
Typically whenever Connor needs immediate medical attention we make the two hour drive to CHOP. However that wasn’t an option this time because he was very unstable. The plan put in place with his GI specialist in this type of situation is for us to take Connor to a local emergency room where he can receive immediate care, and CHOP will work with that emergency department to get him transported as soon as possible.
At 5:15
a.m. Tuesday morning Connor and I arrived at a local emergency room that shall
remain nameless because of the disdain that I have for the level of care that
he received (that’s an entirely different blog post for another day). Ten hours
later we were transported by ambulance to CHOP where we still are today.
Late
Tuesday night after getting settled in at our home away from home on 5 South,
the GI doctors on the floor came to share just how sick our baby boy was. He
somehow contracted two bacterial infections that ended up in his bloodstream,
one of which is known to cause meningitis. After two days, more rounds of
bloodwork than most people have in a year, two x-rays, an ultrasound, CT scan,
and lumbar puncture we were finally able to breathe a little bit easier when we
found out that while his symptoms lined up with those of meningitis, he
thankfully does not have it.
Today was
the first day that Connor was off of what they call “watch protocol” and was
able to go for a walk around the hospital with us. It was the first day he felt
like beating us in UNO (without cheating for once), going to the playroom, and
playing the daily hospital Bingo games. It was the first day since Monday that
we saw glimpses of our happy-go-lucky little boy.
Connor’s
labs are finally trending in the right direction. He is set to reintroduce his
IBD medications tomorrow and appears to be getting a little bit stronger every
day. We are hoping that he picks up stride and we are able to go home soon. We
were already told it won’t be before Monday at the earliest. We miss the other
three kids, the dogs, and the comfort of our own home. We learned a long time
ago that it’s easier to have no expectations because things can change quickly;
so for now we will enjoy our quality time together and do what we can to get our
sweet boy to feel better.
This week
was another not so gentle reminder to try my hardest to enjoy every second of
every day. The trajectory of our week/life can literally change in an instant.
It is so easy to get caught up in the everyday craziness of life and take
things for granted. I haven’t had time to process everything that has happened
this past week, and I can guarantee you that a breakdown is coming once we finally
get Connor home, but after I allow myself an hour to wallow in self-pity, I’m
going to pick myself back up and focus on enjoying every little thing that I
can. Life is too short not to.
.
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