Wednesday, October 31, 2007

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
* * *

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.


Eva Nichole said...

Wow that is one long Halloween day. I am glad the doctor and nurse and everyone could sit down and talk with you about Reuben and your concerns. It can be hard and I remeber when Eva was in the NICU and it seemed everyday I was alone and everyday someone had come in to tell me more bad news. The day they told me she needed a g-tube placed I lost it and I cried and cried. I didn't think I could take anymore bad news again. Eva's doctor and nurse sat with me until they knew I was going to be ok. It was one of the most amazing things I have ever seen a nurse and doctor do for a mom who was going out of her mind.
You are doing wonderful with Reuben and it's all a day by day thing and before you know it those days turn into weeks, months and years. You will look back and be amazed and how well you did.
Hug and Happy Halloween to all,
Crystal and Eva

Kristi said...

Ahhhh... so much better of a day!
I am so GLAD! :-) He looks wonderful! LOVE the photo of him w/ the pumpkin and his first friend, Dylan!
I am glad you are getting a road map... a plan is good :-) Something to work toward and look toward.
Erica's kids look adorable! Although we can't see "them" it was super fun to see them in their Halloween costumes!
So much good news, glad that the pulmonologist is giving you a method to manage secretions and that the Pulm. & ENT are going to conference on a trach plan AND a decrease in heart meds to boot! That's a lot to accomplish in a day! :-)
Cheers to you for bouncing back from a rotten couple of days!

P.S. We still find it "oddly comfortable" at the hospital (when we go for OUTPATIENT stuff!)... we know everyone (it seems!) and it's always like a reunion. So it's definitely not lost on me why the place you least wanted to be is the place where you had a good day!

yp said...

What a delightful, delicious long post detailing your marvellous day. I savored every word and image :o) Thank you for giving me these glimpses into your lives. I celebrate and cry with you always- oxo,y p.s. another community of comfort is the CHARGE conference! All of our lives unified by events none would ever have asked for, yet the celebration is no less profound - perhaps even made more profound.

Lorna said...

Just loving the pics of reu leaning against the Pumpkin!
Great caption too! hehe

Wasn't that great that you got to see Dylan again and his mum, looks like you all had a good day, here's to many more to come!

Happy halloween holiday

Lorna,John & Katie

Sandrine said...

Hi Catherine, great picture of Reuben with the pumpkin.
Thinking about you,

ellen charge said...

what a wonderful day if news and stuff i was practicly leaning on my screen reading it all lol great picslove the pumplin great stuff bout the pulmoligist man and the opthamoligist yay at least even though u have the trach u will get a direction a way and wonderful to get of soem of th meds did you tell him bout thenrusing probs though he mite have some ideas i have an idea its this talk to ur friends at picu and nicu and tell them who knows some may be able to come over on their days of hugs ellen

Nana and Grandad said...

Great news, things seem to be finally coming together and the amazing support is wonderful. We love the photos, especially the one with the pumpkin and his sleepy little face with red hat, so adorable. Catherine just want to thank you so much for that lovely bottle of Champagne you sent for my birthday, it was the best We made a special toast for little Reuben, God bless his fighting spirit. We love you all so much and are keeping the prayers going for an easier road ahead for you. Never give up hope and trust in God. He knows all and is guiding his medical team to do the best for Reuben. Love & prayers

Ericap said...

I will never live that down will I, asking if Halloween is celebrated much in the US? OK, ok .....!!
Wonderful to hear such encouraging news and fantastic unexpected news about Reuben's eyesight!!
Adorable pictures of Reuben and his pumpkin hat!!
Love Erica