Boston & Layla Korte's Fund Raiser

Boston's story:

At 34 weeks pregnant we found out there was an issue with Boston's heart. We were sent to parkview in fort Wayne, who confirmed there was indeed something wrong. They couldn't make an accurate diagnosis because it was over anything they could handle there. They referred us onto Cincinnati children's, which is one of the top cardiac hospitals in the U.S. Cincinnati got us in very quickly to see all the departments we needed, and we learned Boston had a single ventricle heart. More specifically hypoplastic right heart, which means he does not have a right ventricle. Children's gave us about 10 days to sort things at home before i had to be living here. We were able to get a room at the ronald mcdonald house, and I left my other 3 children, husband, 2 dogs, and my newly finished basement project 10 years in the making to move down here. The kids and aj would visit every weekend. I thought that was the hardest thing I had ever done, but that was only the beginning.

Boston was born on June 27th. At 4 days old he underwent a heart cath to have a ductile stent placed to allow bloodflow to his lungs. He did amazing afterwards, and we were able to bring him home just before he turned a month old. Boston thrived at home. He was one of the few heart babies who didn't need a feeding tube, and one of the only heart babies able to breastfeed. He truly showed that nothing would define him, and he made his own rules.

On October 13th he underwent another heart cath to gather pre surgery testing for his first open heart surgery, called the bidirectional Glenn. They also looked at his Stent to possibly inflate it, and determined no intervention was needed. We were scheduled to be released the next morning, however his oxygen saturation began to drop for no known reason. They ended up keeping us 5 days and running every test under the sun to try to determine why this was happening. They found nothing and decided Boston was telling us it was time for surgery, so they scheduled us for the following Tuesday and released us to go home to have the rest of the week with our other kids. Less than 12 hours after being home Boston spiked a fever and we had to have him transported by squad back to children's. Once here they ran more testing and determined he had gotten a staph infection from an iv site during his cath. The fear was since he had multiple days of positive cultures that he had endocarditis, or that bacteria had stuck to his Stent. Infectious disease was consulted and recommended 6 weeks of antibiotics before proceeding to the Glenn. We will have to stay inpatient during this time because of his low saturation, so that he can be closely monitored. Doctors are unsure if we can hold him off the full 6 weeks, but the plan is to hold him off as long as possible.

Layla Update:

We know people have been concerned about Layla and asking about her, and that we have been pretty silent on that front. We needed some time to process, and to let family and close friends know first. But Layla's testing came back and she has T-ALL leukemia. Obviously we are devastated. We have 2 kids in the hospital with very serious health conditions, and at the same time to boot. 

We have been in a fog since learning the news. Our days are spent running between the 2 rooms, which are complete opposite sides of the hospital. Sleeping, eating and drinking have been sparse these few days. Tiffany's mom Nancy brought Layla down and ended up staying after learning the news so she could help us. She has spent a lot of time with Boston while we got Layla settled, but she spent some time with Layla a few evenings playing cards ❤️. The other kids came down this weekend so we could tell them, and Tiffany's parents are switching duties. Ken will stay here and Nancy will take the other 2 back home and stay with them. 

We have met and got her treatment plan. We will be inpatient for 4 weeks for treatment. If all goes well we will get to go home then and do treatment in the clinic for about 8-9 months. Then she will go into maintenance treatment done all from home for a year and a half. She has already started treatment and is responding very well to it so far. 

Given this new info we have no idea when Tiffany will be able to return to work. She has already been off since May when she had to move to Cincinnati because of Boston's diagnosis. I know we have already asked for so much support with Boston, and everyone has been amazing to us. But this makes a hard situation even harder. We already have a t-shirt sale in the works for Layla, and there is a cash prize raffle in the works as well. More info will be on the page as we finalize details. We truly appreciate everything each and every one of you have done thus far. 

We are Layla strong!