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!

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 !

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://YouTu.be/BuaGctu0kVw  is the link just in case you done believe me about what we were watching for about 2 hours.

Waiting

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

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 !

Merry Christmas

Praying at the Manger - (I would like to think they are praying for good health)

We had a wonderful Christmas shared with our closest families that spanned over about three days.  We start out on Christmas Eve with a traditional "Wigilia", open presents, go to midnight mass  OK, now with kids it's 8pm mass. Christmas Day we go to mass once more and we usually dress up in our traditional outfits and celebrate with a big dinner once again. December 26th, though most have to go to work, I took vacation and celebrated the birth of Jesus once more in church for a mass with just my kids since dad had to work, the remaining of the day we spent putting all toys together and playing with ALL the stuff the kids got for Christmas.

It was ALL great!

So far the best present was that the kids is our health.  So far we are all healthy and not any visible signs of colds just yet.. shhhh and knock on wood.

I hope you all had just as much fun as we did and that you got to spend your holidays with the ones that mean the most to you and really experience the real meaning of Christmas, the birth of our Savior Jesus Christ.

My angels before Wigilia

Can you tell she is excited

Concentrating to pry it out of the box



Smile, smile, smile



Ughh.. they are over it !!! haha





Always Something...

Wouldn't it be nice to have a day off where I can just spend the day with the kids, do the usual errands, etc... nope, not around here. John likes to keep us on our toes and this time came down with pink eye, yep, pink eye.

Gross, pussy, pink and swollen eyes. Our kid just needs a break. I know in the grand scheme of things this is nothing, but it's always something.  So off to the pediatrician we went today because if it got worse over the weekend there would be no one to see him on Saturday or Sunday besides the ER, and boy do we NOT want to go there!  So a quick call to the ped at 9:30 and we are in at 12 pm right after Emily's preschool.  I also asked to do a full check because of the swollen eyes made me think if he wasn't gathering fluid so she felt the liver and funny how she just knew what I was afraid of (every heart parent knows my biggest fear) She said that it's not the same type of swelling if he was to retain fluid and be in heart failure, but better to be safe than sorry and I'm glad our pediatrician is on board. While we were at it, we checked the ears and it turns out that last month's ear infection wasn't quite completely gone and there is some fluid still in the right ear so we were given a different antibiotic instead of just drops for the eyes.  Hopefully this medicine tastes good just like his Enalapril.

Also, we scheduled the next heart catheterizing for January 11, 2013, because what a way to start the New Year than with a hospital visit... that's just how we roll. I already spoke to the nurses who scheduled it and said that it most likely will be OK to give him a dose of Versed before they start doing ANYTHING to him to make him a little loopy and hopefully a lot more calm and relaxed... than the nurse asked me if I will need some as well... HA!  I wish !

Till next time..

Cardiology Update

This past Friday we had a cardiology check up and it was not as bad as it was last time but I think we are still about 2 years away from cooperative Jasiu at cardiology. So until then, daddy is coming along for the ride.  So again Jasiu was not a fan of even the receptionist as we walked in, but we distracted him with some toys and books in the waiting room (this bought us 10 minutes), however since we had an appointment first thing in the morning, as nurses were walking in andsmiled at him saying to each other "ohh look how cute he is" he lost it again. Then when the door opened again for our nurse to take us back and Jasiu lost his marbles... again...

Weight - a whopping 27 pounds
Height - ??? I didn't even get to write it down
Blood pressure - decent
Heart rate - 150 (not his normal but he was screaming for a good 20 min by this point)
Pulse Ox - 79-82%, but again he was screaming so that's not necessarily right.

Echo time was awful tolerable. The poor kiddo cried and cried and we tried everything imaginable - bubbles, lolly pops, cell phone, tablet, books, peek-a-boo, TV, no TV, in my arms and on the exam table, etc. I felt so bad for him, the look I was getting seemed as if he though we were betraying him by holding him down hostage while the tech was doing he scan. Well.. we got a few periods of decent calmness and the tech was VERY patient and was able to get what he needed for the doctor. By the end of the echo Jasiu was so tired that he was almost falling asleep (what we were praying for this whole time) and as he was dozing off, he could see the tech from the corner of his eye and began sobbing uncontrollably... again.  My poor baby was so scared and there was nothing we could do.

After the echo was read, Dr. H came in to do his exam and discus the next steps. -

The echo looked "good", doctor's words. Although the heart muscle is still a little bit thickened, the doctor said that the function is great and is pumping really well. He said the Enalapril is doing what it should be and we are staying on the 1ml twice a day as we have for the past year. He ordered us to have a heart catheterizing done in the next few months and we asked if it's fine if we have it done after the holidays and he said it was fine, so we are waiting for a call to schedule it and I plan on doing it in the first few weeks of January, depending on availability.  This puts us a little at ease because we can enjoy Christmas and New Year celebrations with family but at the same time we will have to be on higher alert so that we try to prevent him getting sick before that cath. Even a cough, runny nose or anything along those lines, as little as it may seem will defer the cath because a lot is at stake with anaesthesia and the evasiveness of procedure so this is a big deal. The results will tell us if we are a good candidate for the Fontan (which right now it seems as it is but we need this diagnostic test to tell us). Once this is complete, Jasiu's case will be brought before the surgical and cardiology team to discuss and tell us to schedule the Fontan.

So this is where we are.  We are in a good shape and trying to enjoy the season with our family and making memories and spending good quality time together as much as we can.  The first fun thing we did this December was to see Santa... well it was fun for everyone but Jasiu- he was not a fan of Santa :( but we had fun, nonetheless.



Waiting for Santa




Jasiu not so happy to come near the Big Man




Out of sight out of mind...




Emily not shy at all :)




Playing with cousins




Silly Boy



Hate the Cold/Flu season...

I must preface this blog post to just say that despite this complaining blog post, I am  blessed to be able to complain about it and just the fact that my kids are able to go through these colds at home we are lucky. Many are not so lucky and would love to have their kids to be at home... just putting things into perspective.. but it still sucks for us.

Well it started since Emily started preschool and brough home the first cold, at least that's where I think it originated. She then proceeded to get better and we were hopeful that Jasiu's flu shot will do its magic, well it hasn't and the next few weeks it was Jasiu coughing on and off and then Emily the next week and this continued for over two months. Nothing that seemed too alarming, just the normal every day stuff, which got slightly worse at night, but they slept though it.  We cranked up the humidifiers, rubbed in the Vick's and tried all homeopathic remedies we could think of.. This Sunday it got a lot worse for Emily to the point where I thought her cough was croupy and I already made the decision that Monday she would not be in school.

Well Monday she spiked a 103 fever and vomited. Fun times. A few hours later, Jasiu- also fever.. go figure.  Anyways, we make an appointment with the pediatrician for late afternoon after work and here is the verdict

Emily -  a sinus infection most likely from the prolonged cough and snotty nose
Jasiu - right ear infection most likely from the prolonged congestion
Both - amoxicillin for 10 days and acetaminophen (as needed for the fever)

So I ask for prayers for my two little sickos that they get better soon and we get some good nights rest (ALL of us!)

I am also pretty tired of changing and washing the bed sheets and comforters EVERY DAY from a different bed :( and cleaning puke from everywhere. We are at the point where last night there was a puke bucket in Emily's room, Jasiu;s room and in our room just in case they decided to spend part of the night in our room (not unlikely).

Must also give many thanks to our grandma's and aunties who watch the kids during the day and are able to care for the kids so Joe and I don't have to take too much time off of work. If we had to we would, but again we are blessed with excellent caregivers for our childern. 

Also an update on Jasiu - I am diligently working on getting him the Synagis shot set up through insurance to protect him from RSV. Synagis shots are VERY expensive and insurances try to get out of covering them once a baby is a certain age or what they think is not high risk, but according to our doctor and the American  Board of Pediatrics John should still qualify and would benefit from it.  The cost outweighs the risk of RSV, even with our insurance the copay was 50 dollars per shot (and this is actually fairly cheap compared to many people's co pays).

So lift us up in prayer as the kids get through the cold/flu season because the Thanksgiving and Christmas are our favorite holidays and we would like to enjoy them in health.

Holloween picturest to come soon.