Monday, April 22, 2013

Post Fontan !!!!

still waiting patiently
Hello from PSHU (Pediatric Surgical Heart Unit) at Advocate Hope Hospital. God is so good. We are hours post Fontan and doing very well. The day started out rough with some waiting room anxiety as our surgery time was severely delayed, Jasiu was getting hungry and agitated due to hunger, but he took everything like a champ and we finally got the versed (happy meds) at 1pm and by 1:15 he was in the operating room playing peek a boo with the anaesthesiologist (or so we were told). (we were scheduled for a 9:30 am surgery)  Then he was put completely under and went to sleep. They got an iv in the foot and one spare one on his left hand, but that one is not being used so it's not bothering him too much.  Our nurse during the operation was super super nice and came out almost every hour with an update. Jasiu came on the bypass machine (heart and lungs machine) very smoothly, than Dr. Illbawi did the Fontan (major portion of the surgery) and then came off the bypass very well also, with very minimal blood loss and his count was good, so they did not need to actually use the blood during the surgery, which is extremely good, however they are still keeping the blood around one more day just in case he would need the transfusion in the next 24 to 48 hours. They closed him up, stabilized in his room and we finally got to see him at 6pm. So we were away for only 5 hours, but it seemed like forever. 

the Bair hugger cooling machine
Jasiu came out of surgery extubated (off of the ventilator) and on 3 liters of regular flow oxygen and his saturation's are around 99-95 (mostly 99!!!). The pressures were good and they did not need to do a Fenestration (small opening in the tube they placed to release pressure). This is such a blessing to see. He is a bit puffy/ swollen around the face and neck and that is to be expected. He is only on dobutamine (blood pressure medicine) to help his heart with the pumping. Other than that he is on IV fluids and was given some bicarbonates and now a calcium supplement all in an effort to get to a good equilibrium as the body stabilizes after surgery. Hew was still sleepy from the anesthesia so he got the pain/ sedation med at 9pm when he was starting to move and thrash. He's only on .39mg/hour so that is a small dose for now but is probably expected to go up tomorrow, unless he tolerates pain well. Additionally, his temperature was starting to rise slowly, so he got a Tylenol suppository and a cooling blanket, which really isn't a blanket since it's an under body type. Really interesting to see a puffy mat which cooled air flows through out and cools the body. It's called Bair hugger cooling blanket that comes with a little portable air conditioner/heater depending on what temperature they are trying to achieve. Bair Hugger. for more info on this interesting gadget. Blood gasses are coming  back with good numbers and everyone is doing well with his progress. So good actually that as of 11pm he is no longer 1/1 with a nurse and is sharing a head nurse with the bed next door.

Jasiu currently is sporting two separate chest tubes, urine catheter, arterial line, central line, 2 iv's, oxygen nose cannula, cerebral and renal servo saturation monitors, pulse ox probe, his binky and Barney! 

To someone who has never been around this it would seem like but somehow we were mentally prepared to see it. Though it's still not pleasant to look at and seeing your baby boy connected to so many wires, tubes and monitors breaks a mamma's and tata's heart. He was still pretty sleepy so only went for the nasal cannula once and the head monitor once as well but we were able to distract him with Barney and hugging Barney and highlander music seems to keep his hands away from the wires.. for now. 

Dr. Illbawi, our surgeon, did come out to see us today after he was done in the OR (and he had 4 surgeries today) and I couldn't help but hug the man that touched our son's heart yet again.

His first words after Jasiu woke up were for his pacifier and he fell asleep. The next words were for something to drink. He is on a strict fluid restriction for the next 24-36 hours that means he can not drink anything till at least Wednesday morning. I have been warned that this will be the hardest part, not being able to give him what he wants which is so basic.. water...

We decided that to try to avoid having Jasiu freak out if he happens to wake up so at least one of us will stay with him at all times. I'm taking the first shift while Joe went to try to attempt some shut eye.  Baby boy is sleeping so I'm able to type up an update and it's a way for me not to fall asleep. It has been a long day, but it's the least we can do for him, just be there.

We appreciate all your prayers and good thoughts through text messages, phone calls and facebook. God is Good and we are thankful for everything. While we are not "out of the woods yet" we are on the right path so far.


  1. Those are beautiful #'s. So glad you got to give some love to Dr. Ilbawi. Jasiu is such a strong little boy, he's going to probably be a bear to deal with these next couple of weeks - but it's only because he's a fighter. Many hugs coming your way mama!

  2. Wonderful news! Will be praying that the liquid restrictions aren't too brutal. So happy that he is doing so well.