Liam’s Story (as told by mom, Shannon Scott)
Liam was born on February 24, 2017, he was immediately taken from my us and put in the neonatal intensive care unit, to be put on medicine to keep a certain chamber in his heart open. This was only a temporary fix for 7 days until they did the first (The Norwood) of his three stages of open heart surgeries on March 3, 2017.
My husband and I were inpatient at UVA with our son until he was 5 weeks old, when we were finally able to take our little guy home on March 29, 2017. Unfortunately, our time home was short lived and only lasted for 3 weeks. On April 18, we were readmitted, to CHKD in Norfolk, because his O2 levels dropped. Once we were at the ER they did an echocardiograph on him and discovered he had a growth in his heart. The growth turned out to be a severe heart infection called Endocarditis. The treatment for this was 6 weeks of strong antibiotics. Hopefully the antibiotics are enough to treat it, because sometimes this type of infection requires another dangerous surgery to go in and remove the growth from his heart.
After a week of being inpatient he started having seizures out of nowhere. He then was scheduled for an MRI to go in and check on his brain to find the cause of the seizures. They discovered that he had suffered from a stroke, which resulted in permanent brain damage, which in turn was causing the seizures. On June 15th, 2017 we were transferred to UVA in preparation of his 2nd open heart surgery (The Glenn), which was on June 19th, 2017. The day after his surgery his Oxygen saturation dropped down to 15% twice and that was very scary to see him basically stop breathing in front of your eyes, but he pulled through with little intervention.
About a week after surgery he got sick with the parainfluenza which caused him to develop lung disease. He then started to drop in oxygen saturation frequently and they did a heart cath, which they found the hole in his heart was starting to narrow. So they ended up ballooning it open twice in that Cath and it seemed to stop his desaturations he was having. He also starting aspirating when he was eating so he needed to have a G-tube (feeding tube) surgically placed straight into his stomach on August 28th, 2017. We were inpatient from then till September 5th, which came out to be 240 days hospitalized, we were FINALLY able to go home.
We were home for 2 long, and fun-filled months. On a one Thursday afternoon I received a phone call from our cardiologist, he told me that he had sent his last echocardiogram to our surgeon and they decided he needed an unplanned open heart surgery because that hole had started to narrow again and it had gotten pretty bad. So on November 6th, 2017 we traveled back to UVA for pre-op appointments. He then had his third open heart surgery (an Atrial Septectomy) on November 7th, 2017. While his breathing tube was being removed his oxygen saturations dropped to 20%, again a scary site to see when your baby turns purple and is fighting hard to breathe and you can’t do anything to help but pray to God. He finally started to pink back up once they put him on 11 liters of oxygen at 100%. He also suffer from Ileus, which is an injury sustained after surgery to his stomach. We finally got him back up to his full feed amount and then got discharged only 8 days post-op, which was the shortest hospital stay we have ever had.
Well, we got home on Wednesday the 15th and ended up back inpatient at our local hospital on November 19th because his Oxygen saturation dropped during his feeds. While we were there working on his Ileus issues, the hospital overdosed him! They gave him literally 10 times his dose of Clonidine, which a sedative medication. He was supposed to get 9mcg and ended up getting 90mcg. Liam wouldn’t wake up for 24 hours or so. That was a scary thing to see too, when your baby can’t wake up. But he finally woke up and luckily nothing serious happened. We were home the night before Thanksgiving.
Hopefully we can keep him well this winter and stay out of the hospital because we would love to celebrate his 1st Birthday at home and not in the hospital. Hopefully he won’t need any more surgeries until his third stage (the Fontan) which he shouldn’t need until he is between 2-3 years old.