Our HLHS Journey: Cath

I'm going to start out by saying Jasiu is such a trooper and did wonderfully for us the day of and after the cath. His last feeding had to be at 3 am because of the anaesthesia so I woke him up for that and than we had to be at the hospital by 6:30am so once again his sleep was disturbed, but at 6am, this little guy was all smiles and giggles. It almost broke my heart to know that he certainly didn't know what was going to happen but it's actually better that way I think . We went over the plan with the cath nurses and did all the vitals, (Jasiu is now 5.47 kilos= 12lbs .5oz). We also found out that this will require intubation, I had no idea :( I hate that and how the babies sound after extubation, but it had to be done. I signed all the consent forms and the nurses wheeled my smiling happy baby to get started. We wait in the waiting room drinking the hospital's awful coffee without creamer as it was not delivered that day and waited for the phone call to tell us that they are ready to do the actual cath. We got the call and then went to have breakfast, than I went to pump to the NICU pumping room. I'm barely done and Joe calls asking where I am and that Dr. Patel already came out and gave him the lowdown and they are just waking up Jasiu and we'll be able to see him in half hour. Mind you, it only takes me 10-15 minutes to pump and the hospital is big but not that big, I thought it went way too fast. So here is the information from the cath...

Pressures in the lungs are good
The shunt is narrowing a little but it gets taken out during the Glenn so it's a non issue
The Right Pulmonary Artery was narrow and was ballooned

After Mom calmed him down

Heart function is good
WE ARE READY FOR THE GLENN !!!

We go back to see Jasiu and are greeted by not so happy camper with a very raspy voice and cry because of the vent, but not nearly as raspy as after the Norwood since it was in there only for couple of hours, and he's quite hungry. However, all he needed was mommy, because he quickly calmed down, and drank 1.5 oz of pedialite.. to ease his stomach slowly to food after the anaesthesia. Once awake he took some of his milk and went to sleep again while we waited for a room to open up for us on 2. Waiting, with hospital time sucks... we got to our room at 4!!! We have been waiting in a crammed recovery room for 6 hours.. but our little trooper didn't mind and was smiling like nothing ever happened.. he's so amazing.. After a night of intruding nurses, techs and doctors bothering Jasiu and me as we slept Jasiu was his usual happy self in the morning, though I was tired as heck, you can't help but smile when you see his big grin... All the nurses, cardiologists and nurses were wrapped around his little finger.. Jasiu was so happy and bouncy that he threw up his breakfast almost all over the cardiology fellow who was examining him at the time.. I had a feeling he was going to do this as I know the look on Jasiu's face, but wasn't prepared at that right moment.. we all had a good laugh and that was that. Our discharge x-ray, EKG and echo all looked good and even our pediatrician made an appearance. Life is good we went home and Emily couldn't be happier to see mom and Jasiu home again. Somehow she does not do so well at night when I'm not home and instead of sleeping through the night as she normally does, Joe said she got up to go to the bathroom, than needed a drink, than she had a nightmare and etc.. Joe ended up sleeping with her all night and of course didn't get any rest himself either.

Next steps on this journey are the second open heart surgery for Jasiu. The Glenn... The cardiology and surgical teams will discuss Jasiu's case this Wednesday at their weekly conference and decide when his Glenn will be, than Katie, Dr. Illbawi's nurse will call us with the date. I think I will be a nervous wreck until I get that phone call. I'm already dreading it, though I think I am looking forward to it so that Jas gets stronger and better and able to see more people and grow without having another surgery hanging over our heads for a while. The feelings are indescribable. On one hand I want him to be better and know he needs it, on the other hand I will have to sign for his life and hand him over to the surgeons. He looks so good now... ughhh God will have to get us through this as he has so far.. that's all I can say.

Here are some pics of our little trooper...