Our Seattle Children’s Nightmare…
This year marked the fifth anniversary of our time in PICU at Seattle Children‘s, and I wanted to provide details that we hadn’t previously talked about outside of our family. In part I wanted to do as a sort of catharsis, but also because unless issues are brought to light, they are not fixed…and there certainly are some fixes needed.
The question though is how to relay the information. Much will be what we’ve written about on Evanna’s FB Community Page during that time and since, but some details we’ve never discussed until now.
So let me set the stage leading up to just after the first shunt replacement.
May 11, 2017. A Thursday. Evanna had PT, and one of the things that had been worked on what had been thought to be torticollis, which is where Evanna wasn’t able to turn her head part of the way in one direction. We now know this wasn’t the case. Her shunt tubing had adhered to tissue somewhere along where it ran down the side of her neck. At this particular PT session, the therapist had been stretching (carefully, but stretching), when she suddenly cried out in pain Initially, no signs of issues were displayed.
Later that day, we began to notice fluid build up around the site of the shunt. A slow build up, but building up nonetheless. And she started to get fussier than normal. Called that evening to the Seattle Children’s on-call neurosurgeon, and he displayed little concern, suggesting that we wait, and follow up with an appointment with her regular neurosurgeon the next day if needed. We discussed for all of about 30 seconds, and decided JoAnn would take her up to have her checked out, against that advice, because any issues with shunts can turn critical quickly, especially when there’s already symptomatic Chiari Malformation in play. So they get up there, get checked in, eventually get seen, albeit with a little attitude from that on-call neuro. Turns out, and for the purposes of this post because it becomes a theme of this visit, we were right. The shunt had an issue–the tubing had become disconnected from the valve.
Next day, they schedule surgery and replace the shunt (May 12th)
But now has low O2 levels that they’re watching, and initially flowing O2 past her mouth and nose.
This is about when we began hearing from the doctors that “..she must have had this all along.” And it’s also when we began wondering how in the world they could claim that, and why in the world they would even say it, because:
- Records from their own NICU when she was born state otherwise. She did not leave with desats.
- During their time in Iowa earlier in the year, she spent a night being monitored at the ER (she apparently passed a kidney stone), and during that time had no desats or concerns.
- She co-slept with us from the beginning. No desats.
- She either napped in our arms or beside us, always. No desats.
We’ll come back to this, but for now, on to the rest of the timeline.
On the 13th, she’s up and down as she recovers from surgery.
On the 14th, mostly back to her happy, smiling self.
On the 15th, determined her desats are enough that she will require oxygen during the night and when she naps. Later on the 15th, Evanna starts acting sick, cranky, and her lungs are “junky”. She’s going downhill. We get coverage for the other kids so I can be up there alongside JoAnn.
On the 16th, despite our emotional state, we have to get a little forceful with the treatment team. You see, neurosurgery decided the day before that this was all just a pulmonology issue, so they bowed out. We saw the decline, and looked at ALL of the symptoms, and demanded they get neurosurgery back in to check the shunt. We had to fight for it. Guess what was discovered? The shunt was failing because the catheter that runs from the ventricles up to the shunt was clogged or partially clogged. Back to surgery to replace the replacement.
But that’s not all. I’m going to quote directly from the Facebook post I did:
Evanna’s out of surgery. Don’t have much of an update beyond that yet because…well, they changed plans.
Originally she was supposed to go to PACU (post-anesthesia care unit) after the OR for initial recovery/wake-up, and JoAnn would be there with her, then go up to PICU with her.
They decided–without letting JoAnn know–that they were taking her straight to PICU, and intubated…and the real kicker…JoAnn wouldn’t be able to be with her or see her for an hour after her arrival in PICU.
We sent what we call the “acknowledgment letter” on May 26th and I failed to send the follow up summary letter reflecting the steps taken—I apologize.
I’m sorry I wasn’t clear—I never wrote the follow up letter—that’s what I was apologizing for, he said sheepishly.
This year marked the fifth anniversary of our time in PICU at Seattle Children‘s, and I wanted to provide details that we hadn’t previously talked about outside of our family. In part I wanted to do as a sort of catharsis, but also because unless issues are brought to light, they are not fixed…and there…