In one month from now, we will be handing over Jasiu for his third open heart surgery. Yes, our date has been changed to April 22. Friday we had a consult with Dr. Illbawi, Jasiu's surgeon. He is such an amazing person to us and to so many families that he touches during the toughest times. He takes time few times a month to sit down with families and go over the procedure, draw pictures, answer questions and provide hope. Me being the "obsessive compulsive disorder" one I knew the procedure fairly well but I listened with Joe and then we asked our questions. To prepare for this meeting, last week, again being the OCD one, I got Jasiu's medical records from the hospital for his last catheterizing procedure and his last echo report to get an idea of what exactly we are up against in detail. I learned a few things about the specifics of Jasiu's anatomy and maybe I think that I should have known before, but I know now. Another thing I learned is though I know a lot of medical jargon, I still don't know that much and had to look up quite a few things. Here are a few observations from reading these documents:
Listening to the official risks of the procedure at the hospital and signing is one thing and actually reading them in your home, right there in black and white, you want to just throw up right there
The report actually included the word "beautiful" as in "the left pulmonary artery near the hilum looks beautiful" With such a complicated anatomy knowing something that often gives these kids issues, we were blessed with a BEAUTIFUL pulmonary artery.
Once wasn't enough, we also saw the word a second time as in "beautifully low diastolic ventricular pressure"
A disappointing thing to see was to see that his heart muscle is still seen as enlarged and some diminished function of the top right
Another thing is they confirmed is the tricuspid valve is leaking but in the report it said "mild"
Overall, all and all, Jasiu is good to go for the Fontan and our surgeon confirmed this.
So in our meeting we found out what the procedure will entail and all the options that may or may not happen depending on what they see once they open him up. Our surgeon performs the extracardiac Fontan, meaning they insert a gortex tube and run it along the outside of the heart wall, instead of going through the heart muscles. Dr. Illbawi switched to this variation of the procedure about 12 years ago and has seen improvement in the long term outlook for his patients. Jasiu may or may not also need a fenestration, which is a small opening in the new tube connecting to the heart to relieve pressures. They may also need to work on his valve, but all of this we will not know until they see how his body actually looks and reacts to the new circulation. Dr. Illbawi provides so much calm and hope when he speaks that it really puts us a ease. Doesn't make it easier, but it really helps. Below is a picture that Dr. Illbawi drew while he was explaining this to us. Also this link shows a video of what is done (it's not graphic, just computer gnerated 3D visual explanation) Link to Video of HLHS treatment (3 staged surgeries)
In other news, Jasiu and Emily both had some sort of virus and as usual a bad cold for our little man ends up in an ear infection. I took him in on Friday as well because his voice was still hoarse after 5 days and his cough was also not getting better so we went to get checked out and ear infection it was. Since this is our 3 rd infection this winter and even when not with a cold there was a little fluid in his ears at the well visit we got a referral to an ENT specialist (ears, nose, throat) . Hopefully we get an appointment this week because after Easter we are on a mini lock down and Jasiu is sentenced to 3 weeks of being home bound : no stores, parties, church and minimal visitors in hopes to keep germ exposure to a minimum. I hope it works otherwise we postpone once again . For the time being we pray for health and we humbly ask for your continued prayers as well.
This is the second anniversary of Jasiu's first open heart surgery, the Norwood Procedure. I don't think it will ever get easy thinking about that day. That day our fears our hopes and dreams for this baby boy of ours were halted and we just focused on that ONE day, to just get through it. We did. We got through that day and again for his second surgery and we lived our normal life, not thinking much about it for over 18 months. I don't think I dwell on it as much anymore in a sad way, and I feel more overjoyed that he has gotten through it and that despite all of those obstacles he is just kicking HLHS's butt. However as April 22nd approaches (Yes our Fontan date as changed) I'm starting to become emotional once again. We will celebrate today as a victory day and continue celebrating each and every milestone on this journey because life is worth living and Jasiu reminds us of this every day.
We also had a 2 year well baby check up with the pediatrician. I love her and she genuinely takes his best interest to heart and is so darn proud of him. Jasiu in his true diva way only cried when he was being weighed and measured and the ears and throat check, other than that he was talking up a storm, let the doctor listen to his heart and lungs. I was shocked. He is 27.6 pounds and about 34 inches tall which puts him at 42% and 40% for weight and height respectively. Still didn't catch up to his birth 50th percentile but he is on the chart and growing steadily, she is very pleased. She complemented his speech and how vocal Jasiu is. With his Fontan coming up and his last Synagis shot being scheduled for next week she said she will try to convince the insurance company to cover one more dose of the Synagis just to protect him just in case. She said if she pushes hard enough, usually they approve it, I love that she's willing to stand up to them. The last part made my day, she went over his whole 2 year history and noted that besides the scheduled surgeries and two caths he had no hospital admissions, and he has rarely (relatively speaking based on his condition) been in for sick visits and said he and I have done such a good job at keeping him well. When she said that I am pretty sure I saw her get emotionally teared up, as if she was so proud of him. I would have never though I would get that reaction from our doctor, and I'm so glad we chose her and that she cares so much. She even remembered that I'm " that accountant" and asked if I intentionally scheduled his surgery post "tax season" .. Ha ha.. why.. yes I did, that and post flu season I mentioned and she just smiled. It was one of our best visits. It also didn't hurt that Jasiu was all caught up on his vaccines so he had no shots. Hurray for no shots and Jasiu even left the doctor's office saying "Doctor tu" and pointed at his chest that she was listening to him and wasn't crying about it. What a blessing.
So as we celebrate our miracle boy's first fight with HLHS I want to ask for prayers for one of his heart buddies, Austin, who will be fighting his THIRD battle on Monday. Austin will be having his Fontan and needs lots of prayers for a smooth ride and quick recovery and for his mama to have the the strength to get through this with him as well. Go Austin Go !!!
Today marks the end of our 2nd year with our hero. Jasiu turned two years old at exactly 12:34pm today, February 25th. What a wonderful year it has been.
In one year he went from our baby boy barely taking his first steps to a rambunctious little tornado toddler. His love for life is so radiant and pure that it shows in everything he does. When he laughs he laughs to the fullest 1000 watts smiles and giggles, when he cries he throws himself to the floor kicking and screaming when he wants something he will be so persistent that at a certain point everyone will give in to him. His personality is so unique and vibrant that he captures every one's attention everywhere he goes. He is outgoing, passionate and dramatic. He is mesmerized by his Polish heritage and loves all things "goralskie" He wears his hat and drags around his fiddle everywhere he goes. He would wear the traditional outfit all day if I let him. He recently started watching videos of goralskie dancing and he imitates the moves and jumps around like there is no tomorrow. He is trying to sing and is starting to count and even knows some numbers that come next when we count out loud together, loves his cars, trains and mickey... all this love and passion with just half a heart!
We celebrated this amazing milestone with our close family and friends with a very special tractor/ John Deere party for our little guy. I LOVE parties, planning, decorating, and all that goes with it. But this year this birthday somehow snuck up on me and the invites were designed a few weeks before the party and went untouched for about two weeks so they were pretty last minute, but even with only about 2 weeks to plan I came up with some crafty ideas; however, pinterest was starting to make me feel like quite the underachiever with all their John Deere party ideas that I just had not time to get to. I think it turned out pretty well and the kids enjoyed it a lot.
I made water bottle labels, banners via printer, dollar store bins with stickers of tractor's I printed on label paper and I ordered green and yellow m&m's in individual packets. There were green balloons everywhere.
The cake was ordered and it was delicious, I had to go to 3 separate bakeries and none had the tractor decorations so I had to buy my own little tractors at Walmart. Jasiu loved blowing out his candles that I had to relight the candle about 1- times before we finished singing the birthday song.
The only family photo we have of the entire celebration. I'm glad it turned out nice.
We learn that a Piniata should be an outdoor activity and that Jasiu has a pretty mean swing (see dad make a run for it).
Happy Birthday Rock Star ! You truly are our miracle. We love you to the moon and back !
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!
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.
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.
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 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.
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.
