Monday, 18 August 2014

Elias' #heart surgery #Down Syndrome

I have been busy in the last 2 weeks. Today, I actually feel like do nothing at all. I am so tired even though I didn't run a marathon.

Elias went for his heart surgery on July 30th, 2014. We were fortunate to be able to stay at the new Ronald McDonald house in Vancouver. We went in to Vancouver on July 29th, a day before his surgery. His appointment is at 7.30 in the morning. Somebody recommended us to go in a day before because it is very early in the morning. We are glad, we did that.


Elias was sleeping on that morning of the surgery. We have to wake him up and walk to the hospital.

We went to surgery daycare clinic for our appointment. Wait there for about 30 minutes until they called Elias' name. One of the nurse came and gave him some type of drug that make him fell asleep within 10 minutes. This drug put him to sleep so that they can give him IV and insert Anesthesia for him.

I am glad that the nurse took him from the bed instead of I handing him over to the nurses and doctors. They gave us pager so that they can contact us when the surgery is done or if they want us to go in immediately.

Gotta love how big this is. ha ha ha

They asked of we want to stay at the waiting room and they will keep us inform through out the process but we think we will get crazy so we chose to go out instead.

We went out after that, trying to keep ourselves busy. I was hoping that we will be able to see some booths on English Bay for fireworks. We took Sky Train to Burrard street and walked from there. I found out that the booths don't set up before noon. We left there around 1 pm and some booths just started the set up.

It was quite a walk on that day. We were so tired but good work out for both of us.
Around 11.45 am, they paged us. We are not sure how to use it and ended up page ourselves. (Our brainless day. We call the number on our pager and paged ourselves.) We called in to the hospital and finally got a hold of the surgery nurse that told us that we probably just paged ourselves.

We got the news that the surgery went really well. Elias got moved to ICU after that.

We came back around 2.30 pm and went in to ICU to see Elias. He had a lot of wires and machine hooked up with him. He is on temporary pace maker to help his heart to beat normal.

We got to talk to Dr. Campbell about 5 pm. He said that Elias' heart had bigger holes than he thought. His valve is also now split up into 2 valves but the way his valve was working is a surprise to him too. Dr. Campbell said it worked like parachute shape. From my understanding, the valves should move downwards instead of upwards like what Elias had. This is something that we have to keep an eye on, just to make sure that everything will be ok with him.

Long story short, Elias was in ICU for 6 days. Usually, babies and kids stay in ICU for about 1 or 2-3 days. Elias' heart didn't work properly by itself. Eventually, they tried to set pace maker to the different range and keep trying and decreasing some drugs for him. On the 5th day, they only set his pace maker just for the back up and let his heart work by itself.

He made it! What a relief....whew...he got moved upstairs on day 7th. I have to confess that I am glad we stayed there only 1 night! The room, specially the bed was horrible. One of the nurse recommended me to put mattress on the floor instead. It was that bad. (Specially after we were spoiled by the very nice and comfortable from staying at Ronald McDonald house.)

Here are some pictures from the new RMDH Vancouver.


  1. I'm glad the surgery went well. It must be so stressful for you.

  2. Thank you very much. It went really well and he is doing a lot better now. :)

  3. Awww, bless his little heart..literally. My best wishes for his continued good health. =)

  4. Oh my gosh what a scary-sounding ordeal. How is Elias doing now? And even though it wasn't a marathon, I'm positive that all the emotional and physical stress that comes with a marathon, you were feeling (if not more), so it makes total sense that you were exhausted.


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