Monday, January 21, 2013

24 Hour Holter

This past Friday I went with Jasiu to get his 24 hour holter monitor hooked up at the hospital. It actually sounds much more invasive and troublesome than it really was. The registration wait took longer than the actual placing of the stickers and hookup.  Here is a quick description for those of you who are interested,  Click Here.  Though we never had any rhythm issues that we knew of, our hospital likes to get a baseline pre Fontan, it's just another step that we need to do in order to get ready for the next BIG step. It will also make me feel better because while we were in the hospital for the cath, I noticed that Jasiu's heart rate decreased a lot from his regular activity baseline of around 110 beats/minute. He would get as low during deep sleep as 70, but the cardiologist was not worried about it as long as it went up as he stirred and woke up.We will see what they say after they get the results.

He shed only a few tears when we had to place stickers and get hooked up, but after that, I hid the little transmitter in his hoodie and he forgot all about it. By the next day he got used to it and was carrying the pouch around his neck/shoulder. See some pics below. The funny thing to me was that he slept so still when wearing the holter, as if it was prohibiting him from sleeping on his stomach, which it wasn't but may feel a little uncomfortable and his 3 hour nap was spent on his back, which never happens!

Sleeping very still with the pouch hidden under the pillow
total of 5 leads on this holter
The "extra" cables taped to his side
By morning he didn't seem to mind the pouch all that much


I called the cardiologist to follow up from our cath and all was good news. Jasiu is ready for the Fontan but there is no emergency to have it immediately. His pressures are good and function is good as well. His activity level is not alarming and he is still able to be pretty active without getting too blue or extremely winded. The surgery scheduler will call us to get him a date. As of now they are scheduling for March so if she calls me in the next few weeks, I have a feeling we are looking at mid April.  I don't mind so much because I don't think I'm just quite ready to hand him over, don't think I ever will be 100% ready but at least it gives us a little bit more freedom to enjoy his birthday and throw him a little bash to celebrate the big TWO !!!  I'm torn between Mickey Mouse or John Deere Tractor theme, he loves them both, maybe a tractor riding Mickey .

Since it's not for a little while we are letting our extreme guard a little lower and going places and bringing Jasiu. This weekend we had a Polish Highlander Holiday Banquet from the village that I come from in Poland and we dressed up in our traditional outfits and Jasiu was just awesome. He LOVES this stuff! I think we will sign the kids up to dance practice so they can just be around it at least once a week and when they are ready start dancing.  Take a look at our little dancer in action. Everyone was amazed at his energy level and that he looked so "healthy" as most people know of his diagnosis and are diligently praying for his well being. We are so lucky to be surrounded by so many friends and family that are lifting us up in prayer.



Today is "Dzien Babci" in Poland whcih is Grandma's Day and tomorrow is Dzien Dziadka, Grandpa's Day, similar to the US day which is actually in September. Since we are Polish and Emily goes to Polish School on Saturdays her class performed some songs and poems for the grandparents. Here is a video of Emily singing with her friend. Sorry for non Polish speaking viewers, but at least you can see her enthusiasm :) We are so proud of her.  She is the ont on the right with the white sweater and white boots.

Our Grandmas and Grandpas are very involved in taking care of our kids and are the babysitters when we go to work daily, so we are very grateful for thier help and LOVE them very much.  Thank you!





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