Not Again…Part 2

After part one I got a lot of messages! Thank you so much everyone. Many of you stated you hoped things didn’t get worse. Well, from where I sit they didn’t…

We finally got to our MRI slot. I dreaded this. I was scared. I had been holding it together all day and I did end up loosing it. We had to ‘put my son to sleep” leave while he’s with total strangers and not see him until he was stable and awake- so he was going to wake up to complete strangers. Plus he already didn’t feel well and had a shitty day. Yup – this mom bawled her eyes out after leaving him with the MRI team.

My grandpa was on his way home from getting my grandma from the airport so they brought us some real food – this was amazing considering I hadn’t exactly had anything other than that instant oatmeal bowl and a few ER crackers all day.

After a long wait we were able to go back with him. He was completely out of it. The most peaceful, dead weight 2 year old you’ve ever seen. He needed that sleep (even if it was drugged) so badly. And then it was back to our ER room for more hurry up and wait. His dad needed to go home during this time, so I sat and tried to rest with mee man asleep in my arms.

I wasn’t really expecting what came next. A neurosurgeon came in to talk to us. And not about an infection. They found fluid build up in the spinal cord and something with the lower part of his brain. This doctor was honest at least that she really didn’t know what was going on and had to call her boss. The next couple hours included a bunch of confusion and disconnect between the neurosurgery and emergency doctors. We were told at one point if he ate and drank after waking from anesthesia and kept it down we would go home. And momma lion wakes up –

“What about his infection? What happened to the doctor in neurosurgery who had to call her boss? What did he say? What is wrong with my son?”

After asking a nurse 1001 questions we finally got both doctors back in and things sorted out. There was no way a kid who had spent 19+ hours in the emergency department in pain so bad he was either screaming or zoning out, needed to be transferred from another hospital by ambulance, have an emergent sedated MRI was going home.

It would be after 1 am before we got a room, but we finally were going to at least get some pain management and have a conversation the attending neurosurgeon and get a better idea of what was going on.

We spent a lot of time over the next several days trying to entertain a bored, trapped inside 2 year old while trying to keep his pain managed and figure out a pain plan that would work at home. During that time we spent a lot of time going back and forth with doctors who were going back and forth with other doctors trying to figure out what needed to be done and what was wrong. We ended up also doing ANOTHER MRI, this time of his brain, to get a better picture of what was going on.

At this point looking back, a lot of this is a blur. But here’s what we left with:

  • -Having spent 6 days in the hospital
  • -A diagnosis of hydromyelia (fluid in spinal cord), mild ventricularmeglia (mild fluid build up in brain), mild cerebral tonsillar ectopia/herniation (brain sitting too low on spine), suspected tethered spinal cord, and possible neurogenic bladder (bladder that doesn’t work quite right). That’s a lot.
  • -The need to coordinate 8, yes EIGHT, follow up appointments all to be done by the end of the first week of December.
  • -Knowing we man is probably going to be needing surgery in the very near future.

More to come…

The day we got to go home we happened to have an OT appointment scheduled in the sensory gym. It wasn’t the greatest session but we at least got to let him play and have some entertainment before the long drive home. Plus I got proof Daddy fits in the “house” wee man loves to hide in at therapy.

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