On Thursday morning Jasiu woke up with a smile, ate some of his milk by bottle and emptied his bowels Jasiu style (TMI... I know) all while watching Mickey's Club House and waiting happily for rounds. He was smiling, cooing and showing off his high sats at around 81, which is good based on his standards). The doctors were amazed on how well he was doing and I kept asking them if he is really and for sure ready to go home, the last thing I want is to be back a few days later because they discharged us too soon. (It's still early and I'm keeping my fingers crossed but so far so good). His discharge echo, x-ray and EKG all came good. Heart function did show a little lower but I was assured that is to be expected. My son is a rock star!!!! He has many amazing heart buddies whose footsteps he is following which is great. These kids are just so strong beyond belief. Everything they go through and still they are pretty happy kids. So we were ordered to discharge around 9 am but Jasiu fell asleep from tiring our with all the commotion of rounds and everything that we waited about 2 more hours until he woke up to start removing the leads, pulse ox and his IV line. Once fee of all the bondage he was a happy camper and glad to be back in his car seat and of course passed out again on the way home, he loves the car.
Jasiu is home on 3 medicines, Lasix- to help his kidneys so he can pee easier and his heart doesn't have to work so hard, Prevacid - to help with his reflux and Poly Vi Sol- nasty tasting (thank God for NG or he'd never take it) type of multivitamin. Additionally he is taking pain medicines still and we can wean him off of that as soon as he shows signs that he is much more comfortable. Finally, were still on the NG tube :( The two stellar performances with the bottle were a slight fluke, though they showed that he CAN eat, just is not ready to. Once the pain goes away we will work on getting him to take more by bottle and say bye bye to the NG.. at which point he will have to take the Poly Vi by mouth .. yuck :(
We had a WONDERFUL and RESTFUL night. Jasiu was not attached to any machines, looked wonderful and VERY comfortable in his own bassinet. However I did have the Angel Care monitor under his mattress and the video monitor on all night as well (for my sanity of course). He slept for almost 6 hours straight, ate and is back sleeping. I also missed my bed and had a good nights rest as well. We were home under one roof and that was a wonderful feeling all in itself. Wow ...how such small things are the world to us now, we would have never even thought about that a year ago that it was such a blessing to have your kids and your entire family together and not have to split your time between hospital and home. Way too many families have to move and be separated from their other kids while the heart baby is getting treatment and I feel for those families. I am so blessed to have our hospital and great doctors right here 15 minutes away from my home. Thank you Advocate Hope Children's Hospital.
Now I go back to reality and house work for one more month and back to work in ONE month. I am sad and can't wait all at once. It will be a challenge but I can't wait ...
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