So we had our visit to the ER from throwing up which led to the discovery of Little Man’s shunt over draining. They bumped the setting up from a 1 to a 5, which we felt was a drastic adjustment. After some talking we understand that was a necessary adjustment to prevent the brain from collapsing any more.
Two weeks ago we had 3 nights in a row that he slept all night! That hasn’t happened since last year when he was sleeping all night every night prior to his shunt being adjusted from a 2 down to a 1. My gut says it’s related, so having those 3 nights and then getting back to waking up crying I can’t help but feel that for those 3 nights the pressure in his head was where it needs to be. Now since the pressure has been building back since the adjustment, assuming I’m right and it hit its “sweet spot” now it’s getting to be too much pressure. He seems to be getting right back in to more fussy times, waking up crying, and not always acting himself.
He even had one night it was so bad poor guy was screaming crying and holding and grabbing his head on and off. To me it seemed like he had a headache.
My mommy instinct says his setting needs to be dropped down, preferably one setting at a time, until we find that sweet spot again.
We had set up a neurologist appointment to discuss this for this morning and his 15 month well visit was scheduled for this afternoon. With terrible timing over the weekend he started with a runny nose and by end of day yesterday he had goop building in his eyes as well as a possible fever (turns out our thermometer isn’t in sync with the doctors office so we no longer trust it).
At the neurologist appointment we went over our concerns and explained his symptoms of pushing/digging at his right ear, starting to have balance problems at times, grabbing at and holding his shunt. A few nights ago he woke up screaming and holding his head like he had a headache and Motrin was the only thing that worked to get past that. The PA said a lot of it sounded like it could be from an ear infection so they wouldn’t adjust his shunt and wanted to wait until he saw his pediatrician before deciding what to do. She said if his ears are good then they will probably bump up his MRI which should be in 3 weeks to possibly next week.
Well, at the pediatrician his lungs sounded good, he does have some cold symptoms of runny nose and eye discharge but HIS EARS LOOK GREAT. No fluid, they are perfect. To be honest I was kinda hoping for an ear infection. It would be easier to handle knowing what it is now and treating now. Instead I have to wait till morning when the neurologist office opens to call and tell them his ears are fine and figure out when they can see him again and get this all figured out.
I feel like this year is going to be a tough one with his shunt. I just pray that it is all setting related and he doesn’t have to have another brain surgery.
I’m so upset, annoyed and frustrated that they didn’t listen to us or take us seriously. They say that the pushing and digging at his ear is a sign of ear infection but both times he’s been to the pediatrician when doing that his ears have been perfectly fine.
There’s a thing on Facebook with Mother’s Day coming up about mom fighter. Moms with kids who have Hydro, fighting for their kids, being there to support them. I feel like today I didn’t fight hard enough, I have to be his voice and I don’t feel like I spoke loud enough.
Right now I’m frustrated with myself, feeling like I didn’t do enough and with the neurologist PA for not understanding.