CHWO pediatric non invasive cardiac center....

is my nemesis... LOL
I mean I am very glad to have them here in London and that we don't have to travel, but as Dr Buffo put it today, "we're not developing a very good relationship are we?" This he said to me after he said he wasn't happy with Yale's condition. His ASD is once again becoming more restrictive, its not near as bad as it was the last time we were at clinic, but its not optimal. He said it is unusual for us to be seen twice in a row in London, but that he will let it be because he figures by Yale's next echo it will be pretty bad and we will be again sent to Sick Kids for him to have a cath procedure. This is not good news. Although I was prepared to hear it. Didn't I say Yale would likely be in for another procedure in 4 weeks. Well that puts on on schedule...GAH.... how frustrating.
I was really upset and frustrated and asked why they didn't stent in open in the first place. I mean he has EFE (endocardial fibroelastosis) on the left side of his heart (this makes the muscle thick and fibrous) and it would most likely return to its original shape. Dr Buffo explained that after ballooning his ASD they measure his pressures and they look good at the time. They can't keep the cath in for hours to make sure it will stay at those levels. During Yale's previous procedure, his levels were fine for them not to place a stent in. Also they try to avoid placing a stent into the ASD because it just adds another step/complication to his stage 2 surgery.

So needless to say we know we have another admission into Sick Kids in the near future. Its starting to become the story of our lives. I bet they will stent his ASD open and hopefully it will be the last until his stage 2 surgery. Its all very frustrating to say the least, but as always I am very glad we have the access we have to some very good pediatric cardiologists and Yale is taken care of long before he gets into a really bad position. Every day I realize we are so lucky he is even here with us. Going in for another procedure is very frustrating, but nothing at all when you think of what the alternatives could be.

Stay tuned for more information. We go to clinic again on Friday the 29th at 1pm and I'll likely post then whats in store for us.

Family Day in Canada

I think this is my new favorite holdiay! Because of this new holiday, Grandma and Aunt Erica were able to come for a visit. I had been soo used to having Yale at home I forgot that the last time they saw Yale he was still in the critical care unit. WOW how time flies... but they got a good visit in thats for sure. Yale was so spoiled and was held pretty much the ENTIRE time. We even took him on his first shopping trip to Masonville Place. He sure was a trooper and only cried when his diaper was changed ;)

Can't wait for the next visit!

Anyhoo here are some of the highlights!

Grandma and Yale at bathtime.Erica cuddling with her favorite nephew



Yale is not shy about where he sleeps...such a baby.. lol

Hypoplastics in the news!

This is a link I got from the hope for HLHS group I am in. So cool... Not quite the surgery that Yale had, but his second surgery will look very similar to what Etta went through.

Its pretty interesting for those that don't really have a grasp of what HLHS is.

http://wcco.com/specialreports/rebuilding.baby.heart.2.637510.html

Worst Car Ride EVER!

Hiya everyone... well after what was great news at clinic in Sick Kids yesterday, things turned out to be a terrible day...

Yale did well at clinic yesterday. He had an Xray, echo and check up during his visit and YAY for us, Dr Golding said he is doing wonderfully. Well enough for us not to have to go back to Toronto for a few weeks, we can been seen here in London. Dr Golding is going on vacation and is confident Yale will be perfect, so we just have to go to clinic here in London. Dr Buffo should be happy to hear about that! He was upset that the first time we met he gave us bad news and Yale had to go to Sick Kids. We're very excited to finally hear something positive!

Aside from that good news, it was still a very draining tiring day to say the least! In the morning heading to Toronto it took us 1 hour and 45 minutes from home to Sick Kids. To get home it took us 7.5 hours...!!!!!!

I know... it was a bad snow storm, that really wasn't bad at all when we began to leave Toronto. 3 and half hours later we had made it to Mississauga....

Needless to say we saw many people in ditches, but nothing serious, and we made it home safe and sound thanks to Tyler's smart driving. We were all very stressed for the ride, but very glad to make it home. Yale even was giving us BIG SMILES once we were home and changed and fed! He's such a cutie!

SORRY!

Hey everyone.....I bet you are all a little panicy...but like I said before, no news is good news.... sort of.

So...Yale was admitted to Sick Kids on Monday the 4th. The hole between the atria of his heart was too restrictive and in Hypoplast children, this is a NO NO! if the blood can't cross to the left side of the heart it can't go up through the PDA that was stented open and out to the body.

So Wednesday, Dr Lee went in and ballooned the ASD open. This was a catherater procedure and doesn't require open heart surgery. She went up though the vein in the groin and into the heart. The procedure went well, and Yale was in recovery right away. unfortunately while in recovery Yale had a stool that had traces of blood in it. This made them worried that Yale may have developed NEC. (poor oxygen profusion to the intestine, resulting is cell breakdown). My poor little guy was then put on NPO (nothing per oral) and was starved for three days :( luckily though, he didn't develop any more signs of NEC and he was allowed to eat again.... and BOY did he eat! LOL... the little guy no longer requires is NG-tube. He has been taking his meds and feeds 100% orally! WOOHOO!

The only thing that is kind of not too good is that even after the ballooning Yale had trouble holding his O2 saturations and required oxygen for a few days. This is not what normally would happen after his cath, his O2 sats should have become high and strong like the first time we were discharged. This worried Dr Lee and Yale was sent for an echo. There is still quite the gradient between the atria, and this means more than likely they will have to do another procedure to fix it. This time instead of just ballooning the ASD they will put a stent in it to keep it open until Yale's next stage of surgery. So we are still having a close watch, and i predict another admission within the next four weeks.... but i guess as usual, its all up to Yale!

Anyhoo.... here he is... nothing on his face to make you think he may not be that healthy... :) he looks like every other baby out there

personal thoughts

This is just an email I sent out to my email group Hope for children with HLHS. I thought I would put it here as well, to share a little more of the hard things I face every day.

I hear you,I cannot explain to you what I felt hearing that my 4 week old son is going to have to undergo an unplanned procedure. we leave first think in the morning to go to Sick Kids in Toronto. We will be going back into hospital only 11 days after discharge. I am thankful they found this problem before it became just that...a problem. Its just my first time having to face a procedure that wasn't in my plans. I know there are three surgeries... but what about all the issues that arrise between them as well? i am lucky as he is my first, and luckily don't know any different. Even though I don't know what its like to have a HH (heart healthy) child, I still am mourning what should have been. I love Yale with all my heart, but the knowledge that he could leave us at any moment is so tormenting. All we can do is live day to day, and enjoy the blessing that we have, while we have them.
Take Care,
Tanna Leigh
http://babyboyseaton.blogspot.com

Back to Hell :(

Well... after a long day at LHSC with Yale at the cardiology clinic, we are going back to sick kids. I'm so sad and scared. Apparently Dr Buffo noticed that the ASD (the hole in the wall between the two upper chambers of the heart) is starting to close. This is a problem because this hole needs to be there to allow the blood to mix and to go up through the stent that was placed in the PDA and out to the body. I'm glad we caught this when we did, but really upset that Yale has to undergo another procedure....after only a week and a few days at home. He just seemed so normal to me that I wasn't prepared to hear we would be going back to Sick Kids and being admitted so soon. Apparently it won't be an open heart procedure, but something done in the Cath Lab... but still risky and scary as anything they do to his fragile heart is risky and scary.

I'm trying to use my positive thinking about this... but its just something I wasn't prepared for and really has come to slap me across the face. Lot of positive thoughts and prayers are needed for Yale that the procedure goes off without a hitch, and we are back home again really soon!