Happy Halloween from our little pumpkin

Kristi Swann says in her comment "the place you least wanted to be is the place where you had a good day!"

"You're a little heavy, Master Reuben, for leaning on me. Have some compassion! " said the Pumpkin

12 hours at Children's, that's enough to zonk anyone

It's funny when Erica asked, after sending a wonderful photo of the kids over, "Do they celebrate Halloween in the US?". The irony of that will not be lost on our American friends. Do they ever!

Today was a much better day, 12 hours of which were funnily enough spent at Children's. It was full of kids celebrating Halloween. I spotted Ariel, Buzz and the Hulk. I loved photographing this engaging group of kids in the lobby.

I received many calls, emails and blogs about Reu's hearing and how we might be able to get support. Thanks everyone for that! Tomorrow I'll have more time to address the hearing matter again.

Pulimonology "a solid citizen"





We had a 740am appointment with Pulminology (that's lungs) and I have to say, young Dr Platzker with his dickie bow tie is an absolute star. I told him about my fears about "not coping with the trach" and he compassionately said "What aren't you coping with? What problems are you having?". I felt I was entering an intimate therapy session.


He sent Sheila his nurse in to see us and discuss the trach. Sheila is the original Jiffy the trach nurse and on her 61st birthday today she reminded me that God doesn't send you anything you can't deal with, which she knew I'd heard a lot of late, but still, it made me cry right there and then (and on her birthday and on Halloween) and provided a much needed release. Dr P also sent in the nutritionalist.

It's a funny thing. I'd been having this discussion with Dr P about Reu's weight and he kept reassuring me "Listen, his weight and height are in proportion", proportionately he's in the 25-50% percentile. I was to ignore the fact that he was the size of a 2.5m old, as long as he was in proportion, that's what mattered. He really had to labour the point with me though. I'm tired and somewhat lacking brain cells at the moment, though rumour has it, they've been sucked up by the decibel-guzzling suction machine aforementioned. Dr P described Reu as a "solid citizen", I like that, and agreed to email ENT about yesterday's bad news on the trach. He said we needed a road map, that's exactly it. We need to know there's a plan regarding the trach, a milestone to reach.

Dr P has put Reu back on the nebulising treatments to aid his secretions. He'd been weened off them since his cardio bypass, but if it helps on the secretions front (Dr P did a sketch prove the point), then it's gotta be good for Reu. The Lasix (diuretic) which he's been on since birth to relieve pressure on his heart, is finally been weened, as is the sodium chloride med. That just leaves the beta blocker for his ectopic atrial arrythmias and prevacid for reflux. The Ativan sedation has gone!

Then onto the lab for a blood gas. Reu is a difficult stick (difficult to poke for a blood draw which accounts for the NICU hairdo where they shaved his head to put an IV line in there), and Jason held him down, as he had back in the NICU, to help the nurse get a drawer. It's always a difficult thing to watch. It hurts enough ourselves to have it done and we still have that lingering memory with Mum of watching many failed attempts at getting a draw in the NICU, over and over again.

Opthalmology "lucked out"

In Ophthalmology (eyes) Reu was given objects to track and was declared alert and responsive, then the ophthalmologist Dr Borchert said he'd do some tests to see if Reu needed glasses. Glasses? We'd never thought about that in the short term, far too many other accouterments, so Reu's pupils were dilated and after some tests, he was found to have an astigmatism which Jason and I have too, but Dr B said there's a 75% chance it will remedy itself. He'd revisit the glasses issue in 5 years. Hurrah! Dr B said Reu had "lucked out" visually in light of CHARGE. Visual impairment primarily from colobomas is very common with CHARGE and whilst Reu has a coloboma in his left eye, he is able to track equally well with both eyes. Actually, his deafness has had the effect of making him extremely visual and responsive to tactility.

Reach out and touch

A great surprise in the garden today in between appointments. Along came Cassandra and Dylan, also in as outpatients with pulminology. Dylan looked so good and it was the first time the boys had met since the NICU days, that of course being the 2nd time the boys met, the 1st time being in the IVF lab of Dr Sam's last August. And actually back in the NICU, they were both on their backs the whole time in between surgeries so didn't actually see each other.

Dylan was born at 29 weeks so although gestationally they're the same age, he was born 6 weeks before Reuben. There was the most lovely moment. Reuben was doing his little red reuster face and Dylan reached out and touched him and I guess that marks the first time Reuben's been touched by another baby. By his first friend. Nice. Back in the NICU days, Cassandra and I had often talked about our boys getting together and there it happened today, quite impromptu, in the hospital garden. A place where we've both spent some difficult moments of contemplation during the hot, dry summer.

Next a flu jab in the clinic. He really takes such things in his stride though.

And then to the NICU and PICU to see the gang. Feel very much at home in the PICU. Fantastic to see most of the usual suspects in today, all festively dressed.

Me and Steph, PICU



Cindy from the NICU

It's a funny thing being back in the hospital. Medical challenges are part and parcel of these kid's lives. Everywhere you look there are brave kids who've been through a lot and strangely, that becomes the norm. It's not until you leave the hospital that you realise, thankfully, that it's not the norm.







Jen & Tonette, PICU

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BTW... to illustrate the point that they do do Halloween in the UK too, here's a cracking photo of Erica's gorgeous kids, Ella Rose and Hadley.