After the Norwood

Picking up where I left off the other day, Eli has now successfully completed the Norwood procedure.

 We were told the surgery would take anywhere from 8 to 10 hours, depending on how well Eli comes off of the heart lung machine and the bleeding is controlled. His surgery only ended up being 6 hours long and he was back in his room at 1:30p.m. He was now in a special unit called the PSHU (pediatric surgical heart unit). When we (Rafe, my mom and myself) had toured the PSHU previously it seemed a lot more intimidating, this time it seemed welcoming. The nurse told me it would be a few minutes to get Eli all settled in and then I could get in to see him, with many warnings that he had a lot of machinery and tubes attached. I quickly ran to the bathroom and when I got back to the waiting room, Dr. Ilbawi (the heart surgeon) was waiting in the hall to talk to me. I feared the worst, did something happen to go wrong that fast? Thankfully he just wanted to tell me personally  how wonderful Eli had done during surgery and assured me things were going as planned. I smiled and wanted to give that man the biggest hug I could give a person, after all he had just saved my son's life. How could I ever re-pay this man, this miracle worker?

A few minutes later I was allowed to go see Eli, despite everything attached to him, he looked great! The nurses explained everything to me, all of his medicines, his tubes, and the plans for care. Talk about some of the best nurses in the world!

The next morning I got a phone call that they were going to do a bedside procedure to close his breast bone. Typically they wait 3-4 days to do it to allow for swelling to go down but since Eli had little swelling they went ahead and did it the day after surgery.  When a bedside procedure is done, they lock down the whole unit (9 beds), no visitors in or out until everything is finished. Eli was the first procedure for the day and they had 4 that day so I didn't get in to see him until mid-afternoon. During the next few days in the PSHU the nurses and doctors just kept saying "he's following the rule book on recovery". He was their star patient and he was doing everything right.

 Every night when Rafe would get out of work we would head back up to see Eli and check in with the night nurse. We would see Dr. Ilbawi walking the halls every night checking in on his little patients and talking with the parents. It was so comforting to see, this is a doctor who really cares about his babies and was totally approachable if you had questions or concerns. He stopped in one night just to tell us our son is beautiful and such a trooper.

During this time we were staying at the Ronald McDonald house right across the street from the hospital. That place was a lifesaver, we could be with Eli any time of the day or night and only have to walk back home. It was also nice for me because I got to talk to other mommies and hear their stories. I will be honest  and say I was happy to have someone who could relate.

The day before he was discharged, I had a horrible breakdown. Reality set in that I was soon going to be in charge of my baby and have to make sure he is fed and medicated on a tight schedule. It was one doctor after another that day to go over discharge information and all of the do's and don'ts  for his care. Talk about information overload, I ended  up crying for about 30 minutes. One surgery assistant even had the nerve to tell me in a snotty tone, that "if I wasn't ready to be a mother, we can keep Eli longer".....really chicky, you better watch yourself! I also had to learn how to put in a NG tube, which hurt me more than Eli I think. I'm convinced this boy will hate me when he's older!

My list of do's and don'ts : Do make sure you wake up every 3 hours to feed him, Don't let him cry for more than 5 minutes, his heart can't handle it (easier said than done). Don't forget his 8 meds a day, two of them being twice a day. Don't pick him up from his armpits (it will hurt his chest). Don't put lotion, alcohol, or hydrogen peroxide on his scar.  Do take his blood oxygen saturation daily (annoying stupid machine). Don't let his oxygen tank run out. Don't pull his NG tube out. I'm sure there is more that I can't remember at the moment, I have a routine down already. And you understand why I was overwhelmed right?

I was so proud of my little man, he got discharged 12 days after having open heart surgery! It was wonderful having him home with us finally, he got to be ours! Two days later, the noise started. He had developed this loud breathing out of nowhere, he sometimes sounded like he was snoring and other times he sounded like a guinea pig. Whatever the noise was, it was constant. We told the doctor and he thought it had to do with how Eli was positioned. When Eli still had the noise at next weeks appointment Dr. Husayni got worried. Dr. Husayni is the pediatric cardiologist who is monitoring Eli until the second surgery. We meet with Dr. Husayni every friday for the "Norwood Clinic".

Tuesday July 12th I got a phone call from Dr. Husayni who wanted us to see an ENT (ear, nose and throat) doctor, Dr. Marra. We set up an appointment for that same day, and we were told Eli had paralyzed vocal chords. If this didn't clear up in a few weeks, we would have to do a tracheotomy. Let me tell you how frightening that thought was! It seemed so extreme for such a small baby (like heart surgery wasn't). The next morning Dr. Husayni's resident called to say Eli had to be re-admitted to the hospital for testing, they wanted to figure out what was going on with his chords.

So we waited until the hospital called us to say there was room ready. We then headed up to the hospital for what would be a whirlwind of a 3 week stay.....