We recently spent hours in the ER when Oliver was acting off of his usual self.
What is he acting like?
Well, he is crying, very clingy, and does not seem to want to do anything.
That is until I mention he was running a fever, oh, and he has a VP shunt.
Now I have them moving.
Oliver has always been a sweet, quiet boy. Granted he is only a year old, and I am sure he will make those terrible twos memorable, but he has never been a fussy baby despite what he has been through.
When he was only a month old, he had a reservoir placed in his head because he was too underweight for a VP shunt.
This required daily “taps” to relieve the pressure in his head caused by hydrocephalus.
They would remove just enough of the spinal fluid that has failed built up in his head, to keep the pressure down.
I managed to watch the procedure one time, because if he was strong enough to get through it, I should be strong enough for him to be there for support.
Of all the times, more than once a day even, he never cried once!
As a parent of a child with special needs, you learn a completely new definition of strength through them.
Here we were though, in the Children's ER trying to explain to the staff that he really doesn't cry often, and it is very unlike him.
Results came back from the scans and his shunt is still working like it should.
Unfortunately now we move to the next set of doctors, because Oliver doesn't just have one thing we look out for.
Oliver was born with a neurogenic bladder.
Because of his nerve damage from Spina bifida, his bowels move at a much, much slower pace than others.
For this, we are on daily medication for it.
It really is a hit or miss though.
Nothing seemed to be different in this area, but they decide to catheterize him to get a urine sample anyways.
The bad thing about an ER, the wait time for results seems to take hours, but we finally got those results back and this is when we met our first urinary track infection.
For Oliver, kidney function is important to keep healthy, so these don't come lightly.
Five hours later and I am just hit with the reality of it all.
Where others may have associated a fever and fussiness with teething, I had this whole checklist I had to go down and make sure it was not this or that.
As a new mom, new special needs mom at that, I usually have no idea what to expect or look out for when he may be experiencing something new.
Where I was told to look out for foul smelling urine, my son was just clingy and running fever.
In these moments though, I shed my tears, wipe them away and move on because my life will just consist of more ER visits than my friends and family with their own kids.
I have accepted it, and I know that I would spend any amount of time in any hospital facility if it meant getting my son healthy again.
When our children are young, they have no voice to tell us what is wrong.
You just have to trust that mommy instinct and speak up for them when you know something is off.
Does your child use a "sleep system" at night?