The original plan was for Liam to undergo 3 separate heart surgeries by the age of 3. (always with the understanding that we are working with his heart condition, not curing it) He had his first heart surgery on July 17th, at just 3 days old. Instead of the routine recovery we were all expecting, Liam ended up throwing all different types of curve balls. He wasn’t bouncing back as well as expected and was requiring high doses of blood pressure medications to keep his oxygenation up where it needed to be. He developed pulmonary edema (fluid around the lungs) and eventually one of his lungs collapsed, requiring the placement of a second chest tube (one was initially from the heart surgery). He then developed fluid around his right lung, and the doctors attempted to aspirate the fluid. The doctors also performed a heart cath to check the placement and functioning of the shunt to see if maybe that was causing problems and the fluid in the lungs. They unfortunately weren’t able to see what was causing the problems. He continued to stay the same without improving.
By Friday July 21st, they had to reopen his chest bedside to manually inspect the heart shunt to hopefully have answers to all the questions that were on everyone’s mind. Unfortunately, the news we received wasn’t what anyone was expecting or ready to hear. The surgeon informed us that they couldn’t see anything wrong to explain what was happening to Liam. The doctors kept saying “Liam has weird blood” and he was at a greater risk for clots, bleeding and stroke, especially with the dangerous sinusoids in his heart. Due to his current state, the doctors suggested putting Liam on ECMO (a machine that takes over the function of his heart and lungs, giving his body time to heal after the surgery). Something had to be done because he couldn’t continue how he was and this was the safest option. He underwent yet another heart surgery.
Liam handled the transition well, which was a huge relief. While he was on ECMO, he became fluid overloaded and they had to add dialysis to the ECMO machine. He was also diagnosed with DIC and that explained the “weird blood”. He was forming clots and therefore had very low clotting factors which put him at a great risk for bleeding. After several days on ECMO, they attempted to trial him off. He did so well with the trial that he passed and he was taken off ECMO!! Liam continued to improve and was even moved into his own room. Throughout the next few weeks, he was weaned off the oxygen, went from continuous feedings through his NG tube to bolus feeds to see if he could tolerate them. Eventually with how well he was doing, all of his IV lines were removed, nasal cannula was removed, chest sutures were removed and he was moved to Floor 11 (the next level before going home). Talk of him getting discharged with 5-7 days started to happen.
With everything going so well, no one expected what happened next. On Liam’s first day on the new unit, he was requiring oxygen in order to maintain is O2 levels, which he hadn’t previously needed for a while. The second night early in the morning, he coded and went into cardiac arrest. He was immediately taken back to the pediatric cardiac ICU and placed back on ECMO. The doctors were able to maintain a pulse throughout the code which was really good news. Liam was then taken to the cath lab to inspect the shunt and to see what happened. The heart cath did show that his shunt was occluded due to blood clots and that he also had clots that developed in his pulmonary arteries. The doctors were able to remove the clots and placed stents inside the shunt to prevent it from occluding again.
After Liam was stable on the ECMO, they attached him to an EMG to check his brain function. It was determined he was experiencing subclinical seizures (not visible but appear on the scans). He was then put on seizure medications to control them. We were told seizures were common after a cardiac arrest and that they would hopefully go away over time. The other concern was injury to the brain because of the code. His scan shows some very small brain injuries; however, the overall scan was better than the doctors expected. There is a chance he might have some vision problems but because he is so small and his brain is developing, his brain can reroute and he will hopefully be ok.
After just a day on ECMO, he was taken off of it again (again he passed with flying colors). He was later extubated, and I’m thrilled to say his vision so far seems ok. He’s tracking just like he was before the incident. He is currently stable, getting weaned off the supplemental oxygen, the doctors are weaning him off the seizure meds (he hasn’t shown signs of the seizures returning), and has gained 3 lbs!!!
Overall, things are improving, and that’s all anyone could ask for. This little baby truly is a little fighter and he’s going through something no one should ever have to. He has come so far and has endured so much that all everyone wants is for him to continue to improve and finally get the chance to come home. His cardiac surgeons want to keep him in the hospital until his second heart surgery now. Instead of the initial plan of 3 surgeries, talk of putting Liam on the heart transplant list has also come up, mainly in part due to the coronary sinusoids and the risk they have.
The other big issue this family is facing is Liam is running out of breast milk. Brittaney wasn’t able to produce milk for long because stress can decrease milk production. With everything this family has gone through, its understanding as to why she is no longer able to pump. Luckily, she was able to pump some and had some in the U of M milk storage. The problem is there’s only enough left for about 5 days. Brittaney wants Liam to be able to receive the benefits of breast milk and not have to switch to formula. Because he is at U of M, they only allow parents to go through one breast milk bank, which costs $3,000 a month. I’m hoping this go fund me will be able to help cover the cost of milk for Liam and to help with his medical bills. This poor child still has a long road ahead of him, but hopefully having some help with his medical costs can provide some stress relief for his parents.
Brittaney and Kyle are such wonderful people, and it would be absolutely wonderful to show them how people can come together and help when it’s needed. Liam isn’t giving up and neither are we! This little baby has touched so many people and has proven over and over again how strong and determined he is to get better. He is so loved, and I know he has the greatest support system. We’re just asking for your help if you’re able to contribute. If you can make a donation, it would be so greatly appreciated, if you can’t, please share his story and say a prayer for our little warrior. Thank you all for taking the time to read this. ❤️
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