North Platte, NE

The Meyer Family

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Name
Braxton Meyer
Injury/Illness
Heart Defect

At our 20 week ultra sound we were told that something was wrong with baby's heart. We were referred to a maternal and fetal specialist in Lincoln, Nebraska. Then he referred us to a pediatric cardiologist in Lincoln,NE. Braxton was diagnosed with HLHS. At one of our appointments with the cardiologist she saw that he had a pulmonary obstruction. She referred us to Children's Hospital in Omaha,NE for a second opinion. The cardiologist in Omaha took over our care and confirmed the findings. We delivered at Children's Hospital on April 2nd. Braxton was taken to the cath lab that day for a stent placement in a vertical vein. One week later he had his hybrid surgery. Among HLHS he also has Mitral Atresia, Coarctation of Aorta, VSD, Aortic Stenosis and a grade 3 brain hemorrhage. A few days after Braxton surgery he ended up getting a blood infection. He is on a lengthy antibiotic treatment. On April 18th he was taken back to the OR for a PA band tightening. The 8th of May he had a repeat head ultrasound to check on the brain bleed. It was discovered the bleed worsened turning into hydrocephalus. By Monday Braxton was becoming more symptomatic. Children's Hospital in Omaha does not have a neuro surgeon. Braxton was air lifted to Children's Mercy in Kansas City,MO. On Tuesday May 12th, Braxton had a VP shunt surgery to help drain the fluid from his brain into his peritoneal. Surgery went well. He was taken on the ventilator early this morning and on oxygen. When he is stable enough we will be transferred back to Children's Hospital in Omaha to continue his care there.

July 4, 2020
Updates

We have been inpatient since birth, a total of 93 days so far. Braxton had his Glenn and DKS procedure on June 22nd. The DKS procedure went well but had problems with the Glenn procedure. The Glenn procedure is meant to reroute baby’s blood to the lungs. The pressure to his lungs was still really low. Dr. Hammel put a shunt in to help get the pressures to where it should be. The surgeon also had to replace the tricuspid valve after trying to repair it twice. After being on bypass for over 8 hours, the surgeon called it quits for the day and left Braxton’s chest opened. Dr. Hammel said he wanted to take Braxton back down to the OR the next day in the afternoon to see if there was a decompressing vein somewhere that was obstructing blood flow. At 4 am Braxton had emergency surgery because the shunt clotted. After surgery they extubated him. He seemed to be doing better. Hammel didn’t find a decompressing vein said it is slow blood flow. Thursday morning Braxton’s 02 levels were dropping so they intubated him. At 3:30am they were getting ready to take back down to the OR. The tricuspid valve had failed. They replaced the valve and pulled a bunch of junk out of his right lung. After surgery Braxton came back up to the PICU with his chest still opened. The nurses were getting a lot of blood out of his chest tube, which was very concerning. The OR team came up to his room to do a wash out to make sure nothing was actively bleeding. The surgeon ended up putting a BT shunt in to help support the Glenn better. Sometime between all of the surgeries Braxton developed a brain bleed. His doctors here contacted the neurosurgeon in Kansas City to let him know about the bleeds. For about 4 days Braxton had a CT scan every morning. Saturday and Sunday they found a new bleed each day. Since then he hasn’t had anymore. Braxton gets a head ultrasound every day to check on them. Tuesday Braxton’s white blood count was high. The nurse took cultures and sent it down to the lab. He has a bacteria called klebsiella growing in his lungs. He is on an antibiotic for that.  Friday the 3rd of July, Braxton was destating early in the morning. The doctors got an echo of his heart. The echo showed the tricuspid valve had failed again. Dr. Fletcher (cardiologist) and the ICU doctor came to the room to talk. They we’re not very optimistic about Braxton’s future or survival. With him having bleeding and clotting issues, he isn’t a candidate for bypass, ECMO or a heart transplant. The surgeon later on called us to talk about what he thought and an option. Dr. Hammel said he wasn’t ready to give up on our boy. So this morning at 7am Braxton went down to OR. Dr. Hammel and Dr. Delaney were able to put a new valve in the old valve and reversed the Glenn without having to put little man on bypass. Surgery went well and Braxton is back up in his room. He is not out of the woods yet. The next few days are very crucial for his survival.