Post Glenn - Day 2

Jasiu is AMAZING and continues to surprise us and his great doctors and nurses every day. Since my last post on midday of Day 1, we went to the regular floor. He got to the PSHU around 5pm on Monday after surgery and almost exactly 24 hours later we were moving down out of the intensive care unit to a regular care floor, "step down". This experience is so much different from the first surgery...much quicker, stronger and knowledgeable.

Though things have been going generally well, Jasiu is still in a lot of pain as one can imagine. After the shock wore off from Jasiu taking two feeds PO, I mean the whole 4 ounces each feed without so much as a cough or whine...feeding on the floor by bottle has been a struggle and he's back on the NG. However, we knew not to expect full PO feeds right a way... we have a few theories why he took those  two bottles so well: 1) he was starving... he was not fed for over 24 hours because of anaesthesia and 2) he was still on a lot of pain meds so he may not have been bothered by the swallowing and energy needed to feed. Again, these are just our educated guesses... Jasiu needs to get his strength back and he can not do that without food and nourishment, so we will feed through NG until he gets some strength back, recovers from the surgery and gets in overall good health.  Hopefully he may wean himself off of the tube once that happens, otherwise we have a plan in place to wean him when he is medically ready to do so.

Second night was much better than the first and pain is controlled a little better on top of the Lortab (sp?) he can also get Motrin as needed interchangeably, so that helps. He slept much better because of the drugs (so I did too and even horizontally as there is a pullout bed on the floor)  and I feel like he will heal faster if he doesn't struggle and cry, though we don't want him to become dependant on the drugs.. it's really a fine line and we just have to read him well enough to know when he needs it. The biggest thing that hurts him right now from observing him, as he can't really tell us, is his cough from being intubated. He has some gunk stuck in his throat and clearing that requires a cough which he is good at but that causes him to jerk up and we think that causes pain to the incision and his throat. The pain meds will help with that so he can clear his throat without the need to be suctioned as he doesn't like that very much. If suctioning is needed, so be it, it's a necessary evil and eventually makes him feel better.  

Nonetheless, things are looking good for Jasiu and he had a chest x-ray in the morning, EKG and an echo on top of the routine vitals and morning rounds so it was a busy morning for him and he did pretty well. We will wait to see the results of all of these tests later today. We even got a few smiles and coo's from him, so we know his pain level is lower and he's not trying to sit up as much and makes me think that he knows it hurts so he won't do it. He still does bump his head with the big IV pad on his left arm and his eyes and face seem to itch a lot. He has a lot of strength in those little arms as we try to keep them away from scratching his face.  Additionally, he's still on oxygen. It's barely puffing for him as he's on 1/4th of a liter, but he seems to desat if we turn it off. Again, it's still quite early after surgery so he has to get used to the new  "plumbing" as one nurse said it. Also, being in this position already, I know Jasiu needs to adjust to changes sloooooowly, so I requested an even smaller Oxygen attachment a 1L measurement so that we can go down in increments of tenths and not quarters and wean him 1/10 of a liter at a time. He did well with that last time and I had to explain to the nurse since she was hesitant to do so.. I know him best and I know they have this so I had to stand up for him... sometimes that frustrates me with the nurses on 2nd floor. However, 2nd floor is only one floor away from the door so we need to cooperate and get out of there as soon as possible.

Speaking of home, earliest they see us leaving is tomorrow, Thursday, 4 days, 3 nights post surgery. I think it's too early but I trust our doctors and see that Jasiu is soooo strong it's just AMAZING.. I keep praying that we keep taking steps forward and know that home is the best place for him. We need prayers that we don't fall back and keep healthy in the hospital and go home tomorrow.

Day 2- waiting for echo in mommy's arms

Post Glenn - Day 1

Prayers answered, I can say post Glenn. This is huge ! !! We sailed through interstage  beautifully and without any trips to the ER or unplanned doctor's visits. I was paranoid and took as much precaution as possible to make sure he didn't get sick, but we did it and you may call me crazy but I did what every mother in my shoes would do, I protected my son from the unknown and did everything in my power to make sure he thrived.

Now to the update on Jasiu. He had a decent night, as the anaesthesia wore off he was a bit irritable and was given Fentanel for pain and one dose of Versed so that he could be more comfortable. I think he was more hungry than in pain so around 3 am I asked the nurses to check with the doctor and we were able to start giving him clear liquids. He took one ounce of pedialite very quickly. Than at 4:30 he took ounce and a half. Finally at 6 am we were allowed to try breast milk and offered 2 ounces. He took it all by mouth. We watched and he tolerated it well so at 9:15 Jasiu was given 4 ounces, his usual amount per feed. I was the one to feed him and he drank the whole bottle BY MOUTH. !!!!! This date will go down in the calendar because he has never taken the entire bottle orally and this is one day after a major heart surgery. I am so proud of him, he really is a miracle and my hero. I actually cried after he did this, tears of JOY.  Now we can't be surprised if he doesn't continue to eat like this by mouth right a way, he may just have been starving, but we can hope that it's a step in the right direction. Words can not express our happiness with his progress. He is such a strong boy, stronger than I can ever be. God is good to us and we are forever grateful.  Additionally Jasiu took his medicines orally as well without much hesitation, so I was shocked about this as well, but quite happy.

The plan for today is to see how he continues to tolerate the pain, his blood gasses and oxygen requirements. He is now on a nasal cannula of 2L 100% oxygen and doing well. They will continue to wean the oxygen and the Debutamine (heart med).  Actually the heart med was turned off before I left the hospital today at 10:30 am. He no longer has any lights on on his "Christmas tree" (a rack of all med drips that light up as they are dispensed). His oxygen saturation have been excellent in the low 80's high 70's and that is new for Jasiu as well. His color is great and quite pink which is nice to see as well. He still loves his pacifier and being tapped on the but to calm him down...Also they think, depending on how much he's draining to remove the chest tube and possibly be in step down by evening.  I'm shocked, I knew that things moved fast with the Glenn, but this seems awfully fast for me. I wouldn't be surprised If I spend the second night in the upright position on the recliner in the PSHU but if we go down I will be happy as well. Jasiu does things on his own schedule and that is what matters, even if I had to spend the night sleeping on concrete I would, just so he's not alone. His eyes do look quite sad and it's hard to see him in pain and whining a bit, but it is what it is and we try to control his pain as best as we can. 

Now Joe relieved me for a bit so I came home to shower, update blog and get a few hours of sleep. Maybe Emily will be back from grandma's before I have to go back to the hospital, I miss her terribly and she misses Jasiu as well. She has been asking for him yesterday and today and doesn't quite understand why he had to go.

I hope the day continues to go as well as the morning and Jasiu recovers smoothly. We continue to pray for healing of his little heart and body.



Right after Glenn in PSHU



After Extubation :)



GLENN day

Jasiu was referred to in rounds as a "GLENN". That was music to my ears and a highlight of my day which was a long day. It was probably harder than the first because 1 we actually had to bring him to the hospital ourselves and 2 we really got attached to him now that he's been home.

It started out with his last meal of the day at 5:30 am, though Jasiu went to sleep I did not. I still had lots to do before we left. We got to the hospital a little before 8:45 as we were instructed to. Jasiu as always flirted with the nurses had his vitals taken and blood drawn. After all that it was only 9:40 so Jasiu passed out in Joes arms for well over an hour. 10:15 came and went and still no one from surgery there to pick him up as scheduled. So once he woke up as you can imagine he was a hungry fellow. Once the pacifier didn't work, we walked back nd forth in a cramped pre op room, watched some fifa womens world cup game. Jasiu was calmed for a little bit. The anasthediologist picked him up for OR at 12:30 (2 hours after our schedule) but hej its surgery and we wouldn't want doctors to rush jasiu's surgery so were praying for the first case that it went ok for them. First update was around 2pm that he's on bypass machine and so far good, next at 3 that chest will be closed shortly and we get moved to PSHU waiting room.

Next I get this horrible feeling in the pit of my stomach. Joe left to use the restroom and here I am having this awful feeling and not more than 2 minutes later a nurse comes out to tell me they are opening him up again because his blood pressure hemoglobin and something else dropped and they thought he may have some bleeding or other issues and it needed to be investigated. At that time I thought things went really bad but half hour later he was closed up and everyone assured us it was ok and he's still doing well. There was no bleeding, so they were happy about that but gave him dobutamine drip and also gave him a transfusion from one of the direct donors we just don't know who as they will not tell us, I guess they can't but a huge THANK YOU to those who were able to donate and to those that were turned away for various reasons beyond your own control. Just your willingness to help is so greatly appreciated and we will be forever thankful. Once the medicine kicked in and blood replenished his numbers went back down. It was quite scary for
Us to hear everything didn't go completely smoothly but the surgical team was Very pleased. Hence as a percautionary thing they kept him intubated for a little bit longer. The blood gasses came back good for two hours in a row, then they weaned the vent , gasses still good, then they did CPap (sp?) Where they keep the tube in but turn vent off did a blood gas and it was good so Jasiu was extubated at 9:50 pm. It looked awful but to finally hear something when he cried was bittersweet. It was good to hear him though it is quite raspy its BETTER than the silent vent cry. It broke my heart tosee him go this.

Jasiu's heart function is good and he's only on one heart med which will be weaned off tomorro. He's only on Fentanyl and tylenol for pain and bolus dose of lasix. I'm super excited and hope he continues to improve.

I'm sure I'm forgetting something from today but its midnite and this is from my blackberry so I'm really tired and don't have the energy to reread and correct . Jasius pain meds were inreased for the night so he can get rest and so can u my nuirses and gave me a pillow and a blanket and I can sleep in the actual PSHU.

Please pray for a quick recovery and a restful night and thank you for all the messages on FB and persnal messages.
on F

4 months old ....

 

Dear Jasiu,

Today you are 4 months old and you have come such a long way already... Mom Dad and Emilka love you SOOO much here is a little about you and what you have accomplished already...

You...

• love to wake Mommy up with your smile and play for an hour each morning before Emily wakes up
• smile all the time when we tickle your belly till you get hick ups
• make the same face when you go number # 2 as your sister did.. .it's quite funny
• you put your hand over your eyes and head as if  you had soo many problems ...it's the cutest thing
• don't like when mommy and daddy push you to your limits with the bottle
• love to nap in the front room listening to the fish tank water running
• like to fall asleep in the stroller on our walks
• do NOT like belly time
• love all your aunties
• have great head control and want to sit up way too much than you should for your age
• make the cutest face when we press on your nose or stroke your neck
• giggle when Emilka mom and dad make funny faces at you
• already had your first Goralski outfit on
• move your head so much that you have a bald spot in the back of your head practically from ear to ear
• actually fall asleep on your own sometimes
• have battled and conquered the worst colic ever for 10 weeks
• have spent first 21 days in the hospital
• never been anywhere but home, hospital and pediatrician office by car
• were at the park and not even know it (slept the whole time)
• have had one open heart surgery
• are scheduled for second open heart surgery in two days

You are the best thing that happened to us. We love you so much and wouldn't trade you or Emily for the world.  We wouldn't change a thing about you and only wish you had a healthy heart and not have to suffer so much because of your special heart. You are perfect in our eyes and we only hope that you can grow strong and big with the special heart that God gave you. We will do everything in our power to help you do that and will support you in everything you do. We will stand by you as long as it takes and pray that it's a LONG LONG time. This quarter of a year passed  by so quickly and we are soaking up every minute of it. You taught us to not take anything for granted and continue to be such a blessing with your wide grin and happy self.

Love Mom, Dad and Emily



Jasiu being cool with Auntie Aga




How on earth can a baby be so comfortable sleeping like this?




Tigger, Jasiu's new best friend




Play time with Emily



Cuddly time in PJ's



Father's Day - close to 4 months



Hope...

This just about sums up everything, except I am still climbing that mountain. I was about to "lose my marbles" today and reading Stephanies poem brought me back to the place I should be at.. Hope..  Thanks Stephanie !

Hope nudges me forward,
When things don't seem clear,
It reaches for my hand,
And says, "Have no fear."
It points to the mountain,
And says..."Are you ready?
It's time to begin,
Just keep yourself steady,
And when my steps falter,
I cry..."I can't do this,"
Hope pulls me up,
And says,"We will get through this,"
Together we walk,
Toward the ominous hill,
Then I ask hope again,
Are you sure it's His will?
It's so very dark,
Toward the long road ahead,
I wonder...if I should just stay here instead.
Hope squeezes my hand,
I squeeze back real tight,
Hope says we must go,
And... I know he is right.
As we trudge up the mountan,
Into the unknown,
Hope soon reminds me,
I'm never alone.
Then we reach the summit,
We have come so far,
At the top of this mountain,
I see every star.
Did you think we would make it?
Hope asks, with a smile,
Did you think you'd keep going,
In the midst of your trial?
God surely led you,
Yes...everyday,
He marked out your path,
And then...He paved the way.
And now we'll part ways,
For just a short while,
As you have surpassed,
The worst of your trial.
The path from this place,
Is only downhill,
It's much easier,
And it takes little skill.
I thanked my companion,
For leading the way,
And helping me get,
Where I'm standing today.
God paved the way,
When I thought..."I can't cope."
He taught me to climb,
And then, He sent ..."Hope".

~Stephanie Husted

Blood Donations

I spoke with Life Source Special Donations department yesterday and got Jasiu registered so that people can make blood donations specifically for his surgery which is coming up on 6/27. Though he would still get the blood needed from the blood bank, it is really good if family or friends can donate for you, even as a pay it forward kind of thing. As I stated in my previous post, I am A+ and can not even donate for him. I was so sad to learn that. For the last 3 months I was thinking about this surgery and how I could help him in any way and all I can do is stand there and be strong for him because my blood won't work. Joe on the other hand had no idea what his blood type is, that said, knowing I'm A+ and Jasiu is AB-, that leaves Joe with only two options B or AB, though he was pretty sure he was A+ and was joking with me about how Jasiu ended up with AB... haha..We called Joe's doctor about previous blood work he had done and they told him "AB+O" which is pretty much nonexistent, so he will have blood work done again as part of his annual check up and get to the bottom of this. I'm pretty sure he's AB just don't know the Rh factor, which is a big deal breaker if he's +. Jasiu can only take AB-, A- or B-. I know another couple who both parents were not matches for their son, so I am starting to not feel too terrible but still sad to some degree.

After I got all the technical stuff done with the special donations coordinator, I asked her how many people should show up, or how much blood is needed. The script was written for 4 units, that is 4 people. I also asked if there were more people interested can I spread the word. She said, NO, special donations is quite complicated and they do not want to be overwhelmed for one person since there are many many people also in the same situation, and though the extra blood would not be wasted and go back to the blood bank, the time of the special donations department would be. She said to have 4-6 definite matches lined up with appointments and request that they keep them so that Jasiu gets what he needs. From everyone that responded to my FB post and conversations with family and friends, I have lined up such people and am SO thankful to them as well.

I want to thank each and every one of you who took this to heart and posted announcements on your FB to look for donors. There were a mass of responses and that is so wonderful to read. I can't believe how many good people there are out there willing to help my little special boy. It is overwhelming and I can not even begin to say enough thanks to all. You all mean the world to us. By spreading the word you also spread awareness of CHD's and that is a BIG deal. The more awareness the more funding for research the more knowledge and more medical breakthroughs for kids like Jasiu. 

You can still donate blood to Life Source if you would like, no matter what your type. Blood is in constant shortage and it is the GIFT OF LIFE to so many people. Jasiu received blood during his first surgery and 3 transfusions during recovery from the blood bank, I thank those anonymous people all the time in my prayers as without them, Jasiu may not have been here either,so I ask you go DONATE and know in your heart that you are helping. Though I'm not Jasiu's blood type, I'm going to go as well so that someone may benefit from it.

Finally I want to thank everyone who is praying for Jasiu and his big day. I ask you to pray that he stays healthy and that he can get through this well. I can't wait to see what the world after the Glenn looks like, everyone I know says it's better, though under the circumstances life is good now, I just can't wait for Jasiu to grow into a bouncy toddler so we wait two and a half more weeks for that big day... THANK YOU TO ALL AGAIN !!!!

Surgery Date and Blood Donations

So finally after almost two weeks post cath, I got a call from Katie, Dr. Illbawis surgery coordinator to schedule the date for our Glenn! (I did stalk this lady on the phone since Tuesday with no effect as she called me on Thursday). Jasiu will be going in for the Glenn (Stage 2 surgery) on JUNE 27, 2011. That is three weeks away, seems so far yet so close. Words can not describe the feeling of knowing that my son will have a major open heart surgery again. The emotions that accompany this knowledge are overwhelming 1) Fear - fear that we will once again hand over our son for his heart to be stopped, placed on bypass, and repaired by human hands; fear that each surgery carries the ultimate risk of losing him, fear that if he doesn't have this surgery he will not make it to his first birthday. 2) Excitement - excitement for the fact that once this surgery is over we can take Jasiu out of our little bubble into the world (with caution of course), excitement that he will be stronger and be given a chance to keep growing. 3) Overwhelmed - overwhelmed with a bucket full of other emotions that I can't even describe ( I had to sit down when I saw Katie's number pop up on caller ID for fear of falling).  It's so hard to explain, but it was very emotional to schedule this surgery, maybe because I got to know Jasiu, his little personality, and just got used to him being home.  

Now that we know the date we must make sure Jasiu stays healthy so we are trying to tighten the belt on our little bubble. Even a bad diaper rash could possibly postpone this surgery so therefore we must take all the precautionary measures. That's scary for me too since as of yesterday my own throat started to feel scratchy and a runny nose. We have three weeks to go and week 1- clinic visit with cardiologist at the hospital (place full of germs) week 2 - pediatrician appointment for 4 month vaccines (place full of germs) and week 3- Pre-op appointment at the hospital (again place full of germs).  I now have Purell hand sanitizer in almost every room in our house, my purse, diaper bag, stroller and car in hopes of not spreading anything to Jasiu.

I also learned from my phone call with Katie that Jasiu is blood type AB negative (-). Because Jasiu is already special with his heart, turns out he's also special with his blood type. He has the rarest blood type of all  being AB-, from some research I did, only about 1% of the population have this type. He can only receive AB-, A- or B- blood typed during surgery and for any possible transfusions post op. I am A+ and not a match. I am so sad about this. It breaks my heart that I can't even do him this one favor, but it is what it is, at least I'm still pumping  and I think that's helping him stay healthy. 

I posted this on Facebook and got such an overwhelming response of people stepping up and willing to donate to Jasiu for his surgery. It is so humbling and we are so blessed to have so many people loving Jasiu to be willing to donate blood for him. Even people who are not a match are going out of their way to spread the word and find others who are matches and willing to go in to donate. I will be forever thankful for each and every one of you who are willing and will go to donate.

That said, ANYONE can go in and donate blood if you're eligible. If it doesn't help Jasiu or is not a direct match to him, that blood is not wasted and goes back to the blood bank and will be used by someone who is a match. It is partly because of generous donors that Jasiu is here with us since he received blood during his first surgery and 3 other thansfusions during recovery time, so I will be forever grateful to ALL blood donors. By donating  blood you can save up to three lives. It is very important to donate, I will be donating blood too, even though it won't help Jasiu directly.

Please visit Life Source for more information. To check if you're eligible click here.  For donor centers click here. The closest south side location is at 9630 S. Pulaski Rd. Park Lawn Place Oak Lawn, IL 60453-3391.  

For Direct Donations you will need Jasiu's information and I will post that on Monday.  All I know now is that those willing to go must schedule their appointments 2-6 days before the surgery as Dr. Illbawi only uses fresh blood for his patients (mostly babies). Jasiu's surgery is scheduled for June 27th so donations on his behalf can be made from June 22 forward.

If you do not know your blood type, you an still go in and donate. Instead of paying for a lab to figure out your blood type, you can donate and than call LifeSource a few days later and inquire about your blood type. They must test the blood anyways and will tell you what your type is. It's a pretty cheap alternative as opposed to paying for lab work. If it will not help our son, it WILL help someone. You really do give the gift of life when you donate blood. Through this journey I really learned the selflessness that exists out there, so many people helping one another by donating blood, being organ donors and so many volunteers out there as well as support of friends and family. It's amazing and I still can't believe it. As I said, I will forever be grateful for helping us and all the other blood recipients out there.