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.