Yesterday, while I was at work, Don got the phone call from Variety Children's Heart Clinic regarding Nate's conference.
Here are the basics - more details will come when we know them.
They had a good conference and spent quite a bit of time talking about Nate. They are all in agreement that a Pulmonary Artery banding be done. He is rated at a 2/3 priority, which means the surgery will happen in the next 6 weeks to 3 months. We'll get about 2 weeks notice before the surgery. They expect that Nate will be in hospital (Edmonton) for 7-10 days.
I still have a lot of questions. Some of the information Don was given yesterday contradicts what Dr. Soni told us at our last appointment, so there are still a lot of details to discuss.
Tomorrow we're off to Winnipeg for RSV needles (monthly injection during cold/respiratory season - November to April) which are normally done at BTHC, but due to H1N1 clinics, we'll have to go to Children's in Winnipeg.
Here are the boys checking out the space station on Sunday night. It was visible for about 5 minutes - Brady got quite a kick out of seeing the astronaut's home!
Okay, maybe not the Greatest Day ever....but it was a pretty fantastic day, and it just happens to be a line in one of Chantal Kreviazuk's new songs!
So, while you turn the song on, sit back and enjoy and I'll tell you about a fun day that I had!
On Tuesday I was back to work for the real deal. And I felt pretty good too! This year, our office decided to do a different kind of Christmas party. We omitted the spouses, changed it from a typical fancy dinner in Wpg, and an overnight stay to JUST us girls, during a regular work day, and we went to the SPA!!
It was pretty great. We worked the morning, then went out for lunch together. We got to the spa just before 2, and were pampered till 5:30! We took a little bit of time between treatments for some drinks and snacks. Super fun!
And in a last minute impulse, a dear friend and I decided to go see Chantal Kreviazuk's concert in Winkler. Now here is the most unbelievable and most amazing part. The morning of the concert, my friend went to get tickets....would you believe that we got tickets for.....wait for it....the FRONT ROW!!! And not just front row in the wings.....FRONT ROW - CENTRE!!!
Amazing!
And the concert. Incredible. Chantal has a powerful and moving voice. Amazing strength in her voice. She's pretty funny, too! Her talent on the piano was indescribable! Especially in this venue, where the stage is not even 3 feet away from the front row, it felt like she was singing right to you! Seriously, several times she looked at me....and smiled....AT ME!
A live performance like this is hard to describe and put into words. Just take my advice - if you ever have a chance to see her show....make sure you do!
And a funny thing that happened. We were walking back to the vehicle after the show, and a lady walking in front of us turned around and said I looked just like the opening act (referring to Meaghan Smith, the opening singer). I just had to laugh. Apparently, all it takes is brown hair and bangs to look like her! Her music, accompanied by her husband on guitar (I'm a sucker for husband/wife duos!) was pretty fantastic, too! Loved every song!
So, like Chantal sings in this song....this was a pretty great day!
And thanks Charity Faye Spa, coincidentally, one of the concert's sponsors - and the location of our awesome staff Christmas party! That's another place everyone should visit!
And a final thank you to whomever cancelled their front row tickets the morning of the concert....I'm forever grateful!!!
Nate is having a nap and Brady is watching Mighty Machines, so I've got a few minutes to fill you in!
Yesterday was Nate's appointment with his cardiologist. We left home before 7am, so thankfully Nate slept the whole way in.....or so we thought that to be a good thing. Let me go on.
His PC wanted him to be sedated for this appointment so that they would be able to get very accurate diagnostics. The whole point of the appointment was to put together Nate's case, and then present it to Edmonton, to determine the course of treatment.
So at 9:10am, I gave Nate the medicine (chloral hydrate). Nate's nurse told us this was not a nice tasting medicine! Poor Nate, he had a tough time! He had a bit of a cough, too, so his gag reflex was a bit more sensitive.
Then came the hard part. Usually the medicine is effective in about a half hour, but our Nate, in his usual fashion, fought sleep every step of the way. It took over an hour of him being so upset and crying, then closing his eyes and giving in for about 30 seconds, and then getting all worked up again. Not a fun time. But finally he gave in and fell asleep. Note to self: maybe best to keep him awake on the drive in next time!
Our ultrasound tech was delighted with all the amazing pictures he could take! He just kept taking more and more, since getting shots of this quality would never have happened if he was awake. Even Dr. Soni (his PC) was able to do a thorough physical exam, checking his liver, etc. and was pleased that the liver was not enlarged. They also did and EKG and took his blood pressure.
After review the results, Dr. Soni came in and we talked about where we were headed.
She feels his breathing issues are now heart related
We will increase his meds in the interim
She will present Nate's case to Edmonton on Tuesday, during which the panel will discuss and determine how best to treat Nate (there are 3 different surgery options)
After the panel, Nate will be scheduled for surgery in Edmonton in the next 3-4 months
Interestingly, Dr. Soni told us she had just been in Edmonton at a conference that weekend. One day of the conference had been specifically geared to discussion of treatment of C-CTGA (or L-TGA). She said there are really very few cases that they have treated, and it seems there are differing opinions of treatment.
After Nate woke up, we had a quick consult with physiotherapy for some breathing therapy. We got out of the clinic just after 12.
So, those are the facts! Maybe another day I'll get into how I actually feel about all this!
And since what's a post without a picture....here are my two favorite boys!
I didn't stomp - and I wasn't fierce...if fact I'm quite sure Tyra would not have been impressed. And to be perfectly honest, it wasn't so much a catwalk as it was the tarmac on runway 08 at the Winkler airport.....
But it was fun!! My two super talented and super creative friends met us there to take some awesome family photos. And it was fast....we're talking less than 10 minutes from the first shot to the last! And that just goes to show how good they are!
Because I'm super thrilled about the pics, and because I just can't wait - I thought I'd share just one of my favorites!!
