I'm on a very humbling path right now in life. As many days as we've spent in Children's Mercy, one has to be. My world, my life, my very existence has spent more days than not swaddled up in a generic hospital blanket hooked up to monitors keeping record of his every breath. He takes it all in stride because it's what he knows right now. It's mine and John's responsibility to make sure that he knows life outside the joint as what it is: full of family, love and cows...and one very confused basset hound who wants to play with the little creature in the car seat rather than just sniffing him!
Last Friday at home at the first sign of a fever, John and I loaded Bruce up and headed for Cameron to see our primary doc. After a quick look, she sent us southbound to Children's Mercy. He was fussy and irritable for him and I didn't get the quick fix I was looking for. I know it doesn't work that way...We got to the ER and they covered the basics: blood cultures and xrays. Bruce was a trooper even though for not feeling good and they sent us home that night with amoxicillin and a diagnosis of a little bit of pneumonia in his upper lungs. I thought we were done there. Progressively over the weekend, little man got fussier and if he could've talked, I think he would have told me he had a headache equivalent to the hangover to the time I swam in the Chariton River fully dressed and lost my cell phone in the bathroom closet...he was miserable. After two long nights of no sleep and one momma at the brink, we made our way back to the ER Sunday morning. More blood tests and xrays showed the pneumonia was clearing up but the spinal tap indicated he had meningitis. No wonder the kid hurt.
They sent us up to the sixth floor and we were settling into our corner suite with a view, twice the size of our NICU room, when Bruce had his first seizure. Within minutes, the rapid response team was sounded and we were swept away to our new room in the PICU. He's never had seizures and within 15 minutes, he had two. All day long, he had three total. More tests were ordered and John and I got our game faces on for another day of consults. They were fairly certain it was bacterial meningitis but the source of where it came from was and is still sketchy because of the amoxicillin doses he had at home that did its job and killed some of the bacteria. Because of the seizures, an EEG and MRI were done with abnormal results. EEG showed constant seizure activity in his brainwaves and his MRI showed a mysterious spot in his front right lobal of his brain that is more than likely result of a mild stroke which is more than likely from the meningitis. The neuro surgeon really couldn't commit to a diagnosis today so that's where we're at now: 'more than likely'. Another spinal tap will show us how he is responding to the antibiotics (Infectious Diseases had a conference today where Bruce was a main topic -- let's hope all those minds agree he's on the right antibiotics) and we also should have an idea from more scans how the drugs are affecting, if at all, the mysterious brain spot.
None of this is related to the Pompe Disease. He can still receive his infusions as scheduled as long as he is feeling good, which is why we were so concerned in the very first place when he spiked a fever. Fevers are no good-a. Our goal is to make sure he's as healthy as can be and we were lucky as well as on the ball to get him where he needed to be so the docs can do their job!
So now, we wait for antibiotics to run their course and get little man back up to eating and being his handsome, old soul self. Each day is an improvement. We'll have more doctor visits to add to our already busy schedule once we get out of here again, but we'll take it all day by day. Like the overgrown white sasquatch, Winter, from Santa Claus is Coming to Town -- it's one foot in front of the other. My little family, the three of us, are all inhabitants of the island of misfit toys...On a side note, John and my blood test results came back. Bruce has both a deletion and a mutation of the chromosome that determines his Pompe Disease. The deletion came from John and the mutation came from momma...see? We're a family of misfits!
I share all of this info for the whole world to read because if I didn't have a way to get this off my chest, I would explode. Every day folks here ask me how I am holding up and if I'm OK. I truly am OK. Of course, I'm tired. That's to be expected I would reckon. But, writing/blogging/updating the world on Bruce's conditions is my way of dealing with Bruce's conditions. And, of course, my amazing family and village of support keep me up and running too. John and I are as best as we ever have been and I find strength everyday. In God, in Bruce, in this big ol' crazy world.
We're back on the sixth floor where we were Sunday, briefly. We have a corner penthouse complete with a bed for momma, a recliner for daddy, a bathroom with a shower, a tv, mini fridge and a window view of the chopper pad 20 feet away that brought Bruce here when he was 3 days old...it's like we've come full circle!
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