My sweet boy Milo was born January 4th and before I was even able to hold him and bond with him, he was immediately taken right into the neonatal intensive care unit at St.Joes. He was born with a slew of medical issues including fluid in the lungs (Transient tachypnea, Pulmonary hypertension, a heart defect, and apnea (when you stop breathing in your sleep). My little man outgrew all of these except the apnea. His vitals were low and he would stop breathing at times and the only way he would start breathing again was by manual stimulation. We had found out Milo has Central apnea, which means his brain forgets to tell his body to breathe while he's sleeping. After 2 weeks at St.Joes, no treatments were working and Milo continued to have episodes in which he would stop breathing for long periods of time so they transferred him to the best of the best, RUSH Hospital in the city. My baby suffered through a bunch of tests including CT scans and genetic testing and still nobody has answers about why he was having these episodes. As a mother it is so hard to watch your child suffer and be poked and prodded when nobody has any answers. After my son's 40th day of life, he was sent home from RUSH because his vitals were looking good and we were told they would still be looking for answers and would follow up. Basically, there was nothing they could do for him because they didn't really know what was wrong. He was sent home with oxygen and a puls ox (monitor that goes off, if heart rate or oxygen saturation isn't high enough). For a month he was my smily, happy son and we were learning how to navigate life with his medical issues. After about a month of Milo being home, he started acting funny. He was limp, pale, and his chest wasn't moving. I picked him up and his eyes started rolling back. I have never experienced a pain as severe as watching my son slowly slipping away from me and there was nothing I could do. It was extremely confusing to me because his monitor wasn't going off and he wasn't having any normal signs of an episode. I took my baby into the ER at St.Joes and they immediately sent him back to RUSH. They put him on a monitor and saw that he had over 40 episodes of not breathing within 5 hours. Each time, he stopped breathing for an estimated 20 seconds. Added up, thats 800 full seconds or 14 minutes, of not breathing. For an able adult, 14 minutes of not breathing is excruciating, imagine that on my poor, helpless 3 month old baby. We're at the point where no one knows what's wrong with him and what's causing all of this because all of his test results come back normal. We're not sure what's going to happen with him or what the next step is. We're scared every single second of every single day for our baby boy's life. And the worst part is that no doctors know what's wrong and you can't treat something when you don't know what's wrong.
My boyfriend and I are only 18 years old, working part time jobs and devoting the rest of our time to our tough little man. Hospital bills are crippling us. Yes we have insurance, but insurance does not cover everything. With Milo having to constantly transfer hospitals, he has to constantly redo tests... Unfortunately insurance does not cover the same test being taken twice, as they see it as a "second opinion" even though it's not optional. If we don't get the tests done, we can't get any answers. One week at St. Joes costs $158,000. ONE week. We have been in the hospital with Milo for about 50 days now and our journey has only began... We're not the type of people to ask for help but we're asking now because our little man's future is at stake. My beautiful son Milo Wayne Koester is sick and nobody knows why... please look into your hearts and imagine if the one person you loved more than ANYTHING in the world was suffering and you couldn't do anything to help. Thank you so much for taking the time to read my son's story and literally anything will help! We will keep you updated about his journey and please keep my son and our family in your prayers.