Monday, January 21, 2013

April 15th !!!

April 15, 2013,  this is the date of our Fontan Surgery if nothing changes in the next two and a half months. Deep breaths...

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!

Saturday, January 12, 2013

All done!

As of 1:30 pm we are out and free. All morning tests came back good and we got discharged. We won't know until a week from now on when they call to schedule the Fontan. I will update when we have the date.

The best wagon rides are out of the hospital !

Friday, January 11, 2013

Hello from 2064

We are settled into our comfortable quarters for the night and Mr. Jasiu is doing quite well. Better than I could have ever imagined... We were hanging out in recovery for about 2.5 hours and Jasiu couldn't find that one thing that brought him comfort, Elmo, his violin, even cartoons, then we went in u tube and searched "Goralskie tance" meaning Polish folk dancing which he loves and that was IT !!! For two hours we watched every variety of Polish highlands dancing and singing we could find on you tube and had to explain what it was to each nurse doctor or tech that walked in but jasiu was in 7th heaven and that's what mattered . what can we say he has Polish blood and he loves this stuff.

Then we made the trip up to second floor of Hope and that's when we saw Mr. Cranky for a bit because the nurses had to bug him, vitals,  rounds, meds, pressure dressing removal and the like. But when no-one was in the room he was silly Jasiu like usual.  He drank and ate like a champ and is sound asleep. Joe went home to get some rest, I'm at the hospital with  my little man hoping for an uneventful and semi restful night.

The plan for the night is vitals at 11pm than 4am plus last dose of Iv antibiotic morning meds, x-ray, echo, EKG and then home. Tonight I'm praying it goes all according to plan. Thank you for your support, prayers, and nice comments on facebook all day. We need all the prayers and definitely feel your presence . Thank you all !

Http://  is the link just in case you done believe me about what we were watching for about 2 hours.


So we woke up early and got ready early to leave for the hospital and were waiting at home so that we wouldn't be exposed to hospital for too long. At 8am they call us to get there ASAP because first case can't be done , we leave and get here and turns out they took the first case anyways but they started late on the first case so we are delayed ... Very frustrating ! The second we walked through the hospital doors jasiu freaked out but we got registered settled in and he's ok watching movies.. One last thing, I noticed last night Jasiu sounded slightly stuffy nosed when he was sleeping so we hope that they examine him and its nothing and we go through with it. There is a possibility they can call it off. If we have to go through this stress again it will not be fun ... Please pray

Wednesday, January 2, 2013

Happy New year.. Back to Reality

Happy New Year to everyone! I hope 2012 was great or at least not all terrible for you and pray that 2013 brings on more of the good for everyone.  In retrospect, 2012 for us was very good for  and we continue to thank God for it each and every day. It was a “normal” year for us but especially Jasiu. Besides a few cardiology appointments and many pediatrician appointments we enjoyed the regular everyday things that families with a two “healthy” kids do.  We took a few short family vacations, visited the zoo, went to the park often and just enjoyed time with friends and family. HLHS didn’t take over our daily lives and showed it’s dark side only when it became visible that Jasiu was sick or how easily he got sick or threw up due to exhaustion. But for the most part we lived a “normal” life. I like to think we had a great year because we had NO hospital admissions….and now… back to reality for us!

From the beginning of the year I feel like HLHS will be on our minds ALL.The. Time… starting with a heart cath scheduled for 1/11,  scheduling and going through open heart surgery, and recovery. This year Jasiu turns two in just two short months, TWO ! How amazing that we were blessed with almost two years with this amazing little boy. However since our center schedules the Fontan, last planned surgery for HLHS after the patient turns two even the birthday celebrations may be affected by his condition. Depending on cath results and scheduling of the Fontan by the hospital a birthday celebration may have to be postponed for the sole reason to try to keep our warrior germ free. Why do two year olds have to go through this, why do any kids have to go through it is just beyond me. All we can do is deal with it as best as we can and do what we think is best for our kids.  Only time will tell and we have full faith in God that everything will be good. We do have a very strong willed little boy and as frustrating as it is when he’s misbehaving, I hope he uses this strong will during recovery as well to pull through and kick some Fontan but.

So our 2013 resolution is to make the best of each day, to try to see the silver lining in each situation and most of all to try to keep both kids healthy.

Here is to hoping for a Happy HEALTHY New Year !!!

Ohh and Jasiu is starting the new year with a new hair cut. I feel like my baby just grew up. He wasn't too shaggy to begin with but he was starting to look like he has a mullet (and that's just not our style) so we decided to spruce things up for the holidays. Doesn't he look handsome? Thank you Ciocia Kasia.

Bad mommy didn't take a before pic, but it would have been funny to see on picture.

All Done !