What a difference a nurse makes

Ford seems markedly improved today. Christa was able to cuddle him and even briefly play pattycake. He has taken up his old interest in ornithology with renewed vigour and took to his soother for the first time since the surgery. We had a hard time leaving this evening because he seemed to show no signs of drifting off to sleep. It's great to have him suddenly so bright eyed, but why does he have to do it at 11pm?

There has been no more sign of chyle accumulating in his drainage tubes, but that has more to do with the switch they made to his feeds than the condition having resolved itself. His body isn't producing as much of the fluid anymore because there isn't anymore fat coming in to make it from. They will wait a few days and then do another test to see for sure what the deal is.

He is doing well on the BiPAP from a respiratory point of view, but from a behavioural point of view he is clearly not tolerating it. We feel buoyed by the number of advocates we've had today all pushing for them to remove the apparatus and try him on high-flow. This morning after rounds, the gloomy Intensivist Dr. Seer (I'm not spelling that right, but its phonetically correct) said we should expect him to be on the BiPAP for months given his past struggles, but the surgeon came around later and scoffed at it, suggesting they ought to take it off ASAP, that it might be doing more harm than good for the amount of distress is causes him. A couple nurses seconded his opinion and it sounds like tomorrow they will trial him off it. It's a horrible mask, that we have yet to get a good photo of, and we'll be happy to see it go.

Ford's "central line," which entered his jugular vein through his neck, was removed today. One less line! Yay! I guess the risk of it forming a clot in his neck was too high to let it linger.


His heart's electrical system is still all screwy. He goes for long periods of time in "Sinus rhythm" (normal) but still regularly drifts into "Junctional escape rhythm" (not normal). So he's still hooked up to the pacemaker but it's being used less. Everyone seems optimistic but they are still actively watching it. I was quite pleased with myself, after becoming familiar over the last 4 months with the heart's mechanical components, to get into a conversation with our nurse this evening about P, Q, R, S, and, T waves and the whole electrical side of things. I am well on my way to becoming the cardiologist I always wanted to be (apparently).


(Begin arguably unnecessary Rant)

We've really been struggling again with the ICU's inconsistent 'confidentiality' policy which frequently has us barred from entering the ICU or thrown out when they want to talk about someone else near us. We've had to argue and push our way into the ward at some point every day this week and are really starting to resent having to do it. Mostly that's because we've had so many sympathetic and understanding nurses who have gone out of their way to impress upon the doctors and administrative staff that we *really* want to be there when big decisions about Ford's care are being deliberated... but as soon as they go off shift their impressions trail out the door behind them.

Yesterday our nurse, who was commiserating with us (and even went around the ward putting signs up on all the phones notifying anyone who picked up that if we were calling to come we ought to be let in) said it was mostly a problem with 'older' nurses who'd been around when parents were rarely included or consulted.

As far as I can tell, there does seem to be a big shift in attitude around a family's participation in their child's care. In Edmonton I remember the first week when the NICU doctors explained "rounds" to me. They suggested we go home to sleep at night so that we could get up early and be at the bedside when they came by. That was our time to ask questions and hear about any the changes they were making. It was the same in the PICU.

But here (and I know I've complained about this before) we are made to feel at best like our presence is irrelevant to Ford and his treatment and at worst like we are a nuisance to him and an impediment to his recovery.

The daily experience of having fight with someone on the phone to get permission to come in and see our baby is exhausting, humiliating, and incredibly disempowering.

But then tonight, after a horrible day, we had an amazing nurse who went out of her way to entertain Ford and make sure he was comfortable, who made us feel welcomed and involved, who listened to and answered all my obscure and unnecessary questions.. and I left feeling happy.

What a difference a nurse makes

(End Rant)