Mighty Milo Medical Expenses

I have started a go-fund-me for my friend's dear baby boy. They have endured so much financially, between missed work, trips to the hospitals, meals and lodging; not to mention Milo's medical expenses. Please bless this family with your financial assistance, and let them feel the love in our community. His parents are Jessica and Peter Murfin. Jessica worked for McDonough District Hospital Family Clinic until Milo was born and now she is blessed to be a stay-at-home mother to care for Milo, and Peter works with the Macomb Police Department. This is Milo's story:

After 16 1/2 years of trying for a baby, multiple miscarriages, an ectopic pregnancy, and being told we’d never have a baby, my husband and I found out we were expecting our miracle baby.

It was a difficult and high risk pregnancy, there were several times we thought we were going to lose him. After a serious case of preeclampsia and IUGR, Milo was born via emergency c-section on February 15, 2022 at 27 weeks 6 days gestation weighting in at 1lb 8oz and 12.2” long. He spent 120 days in the NICU at St. John’s hospital in Springfield. While in the NICU he had a few medical scares and was diagnosed with a chronic lung condition due to prematurity. This required for him to be on oxygen 24/7, as well as to have his heart rate and oxygen levels checked constantly.

Shortly after he was discharged he had a routine appointment with his Cardiologist where he was diagnosed with having Pulmonary Hypertension. The right side of his heart is enlarged/thickened because of the pressure in the lungs from the chronic lung condition, and it’s also not allowing the left side to work properly. He was started on medication to help his heart and as well as bi-weekly Cardiologist appointments.

On August 3rd he had a significant reduction in his blood oxygen levels which resulted in us taking him to his pediatrician. His pediatrician then sent him to the ER to be evaluated. His oxygen levels were great at the ER, but a chest X-ray showed some clouding in his lungs. The ER diagnosed him with viral pneumonia and sent him home. His pediatrician did prescribe him a nebulizer to help with the pneumonia.

The following week he had another cardiology appointment, his heart echo showed that his right chamber had actually gotten bigger and was worker harder. His medication was increased. Additionally his oxygen levels were low, again, and we were instructed to increase his home oxygen, continue the nebulizer treatments and keep him comfortable. It could take several weeks for the pneumonia to a go away, especially since he has the chronic lung condition.

He did well the next week and we even got to celebrate his Half Birthday, as well as 2 months out of the NICU. Around Wednesday he started acting fussy and you could tell he wasn’t feeling well, but that was expected and any infection would be much harder on him.

On Friday August 19th he went to his pediatrician for his 6 month well baby visit. While there we noticed that his oxygen levels were getting very low. They kept increasing his oxygen but it was a lot to keep his saturation levels up. He was then sent to the ER where he needed even more oxygen to keep his levels up. He even had to be switched from low flow oxygen to high flow and he wasn’t staying within good saturation levels. The ER decided to have him life flighted to St. John’s Hospital where he would be admitted to their PICU.

Once my husband and I got to St. John’s and they had time to get him settled, we were informed that in the flight over his health had decreased even more. The PICU doctors had to place him on a vent to breath for him at a much higher supply of oxygen. They also had him heavily sedated, and on numerous different medications to keep him comfortable. Additionally they had to place a central line, as well as several other IV sites in order to supply him with the necessary medication and fluids.

The doctors mentioned a few times right after we got there, while relaying information, that “if he pulled through….”, this was when we realized that our sweet happy baby from that morning had gotten very very sick very quickly. That there was a good chance he wasn’t coming back home with us.

Milo did well through the night but on Saturday he started to fight the sedation. Every time he was touched he would drop his oxygen levels and blood pressure. Around 3pm a heart echo was performed, he was doing well, but started to majorly fight to wake up. In a span of seconds his oxygen and blood pressure dropped to practically zero. A code blue was called, my husband and I sat in tears as dozens of doctors and nurses filled his room and tried to get him back. We were sure we were going to lose our baby. After what felt like forever they got his oxygen and blood pressure stable, luckily his heart rate had barely decreased during this ordeal.

After Milo became stable again, his PICU doctor sat us down and said they didn’t feel they were equipped to care for Milo further. They were afraid he wouldn’t make it if he coded again with their limited pediatric cardiac abilities. It was then suggested we transfer him to Children’s Hospital of St. Louis as they has a specialized pediatric cardiac center. We said yes immediately. Additionally, Children’s Hospital is one of only two hospitals in the US that specialize in pediatric pulmonary hypertension. We’d go anywhere to save our baby.

Children’s Hospital was scheduled to pick Milo us at 8pm as they had to round up a special team to come get him, which included several RNs and a pediatric doctor. They were not able to get to us until closer to 10pm due to weather, and he had to be taken by ambulance. Life flight was preferred and obviously quicker, but due to the different types of oxygen needed and the size of the team, ambulance was the only option. It took the transfer crew 2 hours to get him switched to their equipment and ready to go. The switch had to go slow as not to stress Milo out and cause his numbers to drop. We were informed by the pediatric doctor sent on the transfer that it was possible that he may not make the trip. If he were to code in the ambulance they would do everything they could, but in that setting they would be limited. My husband and I were not able to get to Children’s Hospital until after 7 this morning. We didn’t know if we’d still have our baby when we got there.

Milo made the trip just fine, they had him stable and comfortable, they were even able to decrease his oxygen support. They did have to heavily sedate him as well as medically paralyze him to reduce stress. They have been running tests to see if there are any infections they should know about, as well as doing EEGs to make sure his brain is fine and he isn’t having any seizures. So far nothing has grown to make them think he has an infection and his EEG is looking perfect. They believe that something caused his chronic lung condition and pulmonary hypertension to go crazy, which has also had a major effect on his liver.

The plan going forward is to keep him stable, comfortable and heavily sedated. This will allow him to rest, allow the heart medication to work and hopefully reset his pulmonary hypertension. He isn’t out of the woods just yet, and he has a long way to go, but it’s definitely looking more like we will be able to bring our baby home where he belongs.