This is Roman’s story by his mom Michelle: Since I was given the news while pregnant I was pressured to have an abortion when told Roman would have Downs Syndrome as well as having a heart defect. We chose to give him the best life we could possibly give him! Disability or not.
After a very complicated pregnancy. A C section was scheduled at 35 weeks due to Romans heart rate dropping during contractions. Born April 4, 2017 4lbs 10oz this beautiful little boy made his way into the world. After spending 3 weeks in NICU we are finally able to take our baby home!
One month home we are having problems with spitting up and gagging. It wasn’t till the cardiologist who had ordered a ultrasound and xray noticed the fluid in Romans lungs. This starts our monthly stays at the Hospitals.
After a couple of months of being treated for pneumonia due to aspiration from his bottle feeds Roman received his first surgery July 2017. Roman was no longer able to take anything by mouth and a Gtube was put in his stomach. Unfortunately this did not help and he continued to aspirate from reflex. With the diagnosis of his AVSD heart defect and aspiration from reflex Romans lungs are now getting flooded.
August 2017 we are now being airlifted to Nicholas Children’s Hospital in Miami after diuretics and breathing treatments are not working and he is unable to tolerating his feeds. After a 3 week stay Roman is discharged and now requires 24/7 oxygen as well as continuations feeds on his feeding pump.
September 2017 we are still having issues with gagging and spitting up. Roman has his Gtube replaced with the Jtube to help stop the spitting up. It didnt work 3 days later we are rushing him to the ER after turning blue. He was immediately Intubated and planning for his 3rd surgery after a CT scan showed significant lung damage and signs of lung disease. Roman received a Nissen Fundoplication, Blood transfusion and the reversal of the Jtube back to the Gtube. This was our longest hospital stay of a month and half.
As grateful to at least be home and with family for Christmas we are now back in the hospital for New Years. We are now confronted with the harsh truth. Roman has a very rare lung disease that is not curable and has kept him from gaining weight and keeping him at 9lbs for the past 6 months that St. Marys can no longer care or treat him and that we need to be transferred to Shands of Gainsville for a lung biopsy to see if he is a candidate for a lung transplant as well as heart surgery to fix his AVSD.
January 19,2018 we are being transported to Shands. Within hours Roman crashes and is Intubated again. Weeks go by and its one thing after another that is going wrong. Finally the plan is to close the hole in his heart since he is too weak for the biopsy. ( pictures of Romans journey is on his Instagram @ pinneddownwithroman ) . This decision for his heart surgery was last minute since another CT Scan was performed showing more damage. Surgery went well and no one was expecting Roman to recover as well as he did and we are being discharged March 5th on half a liter of oxygen!!!! Because of this great news i give no mind to the fact that he was denied as a candidate for a lung transplant.
Roman is home for a whole month and we celebrate his 1st Birthday!!!! Happy Birthday Doodle Bug!!!
April 7th Roman is having problem breathing again and we are back in the hospital! Now Im thinking our apartment is making him sick so now I had the air ducts cleaned , tested for mold, carpets cleaned then completely replaced as well as a hospital crib ordered. Roman is now requiring a vent to breath.
Current date is July 29th. We have basically been living in hospitals for almost 16 months. Roman just had his 3rd CT. Its not good. Shands was contacted again but they are still refusing the Transplant. However they wrote a letter of Romans condition which has been submitted to the top 7 hospitals who deal with pediatric Lung Transplants. We now are desperately waiting for acceptance.
This is a nutshell of Romans illness. This is a VERY RISKY surgery and his body could reject the new lungs but if this surgery can give him a better quality of life to do the simple things that you and I take for granted I will make sure he is given that opportunity to do so. What child does not deserve to play outside, have their own puppy to play with or even that EPIC trip to Disney? As soon as we get the call Roman will be air lifted to that facilty. Romans father will be staying behind then flying in for surgery. WE NEED YOUR HELP. With Roman and I gone we will have the added expenses of travel (dad visiting) , Transportation , Food, and Lodging. Please help in any way possible even if its sharing Romans story. Thank you for reading and thank you for all your support.
November 6, 2018:
As Roman is now in his 5th and longest hospital stay yet, he is becoming very close to finally going home. He was admitted back into the PICU at St Mary’s after only being home 24 hours from his prior admission with C-diff, UTI, and pulmonary issues back in June. During this stay the decision was made that Roman seriously needed to be evaluated for a lung transplant since his third CT Scan showed no improvement in growth and the cysts seemed to be becoming larger. Putting the wheels in motion with Texas and St Louis Children’s hospital to accept Roman but both agreed that a tracheostomy would benefit Roman giving him a chance to grow before proceeding with an evaluation.
Roman received his tracheostomy a little over a month ago (October 2017). Since then he caught an infection as well as C-diff for the second time due to the antibiotics, not to mention detox and withdrawals from pain medications. This caused Roman to crash and fighting the vent he was medically paralyzed. During this sedation he also was given his third blood transfusion. After slowly waking him from sedation Roman has been improving with every adjustment it has been extremely slow. With that being said, we are positive Roman will be going home by the end of the month once home nursing has been established and he is transitioned to his home vent with proper setting support. We will then stay positive that Roman will stay home, and continue to grow until we are informed that he is strong enough to proceed with his next chapter of his journey. During this time Romans pulmonologist will be in close contact with St Louis and Texas, giving updates of any health changes and we will then update everyone on the next step.
Update: January 1, 2019:
What a year 2018 has been. Started New Years day back in the hospital. Transferred to Shands for 2 months. Was intubated, blood transfusion and heart surgery. Rome and my granddaughter had their 1st birthdays a month apart. Collin graduated and left for basic training. Spent 6 months in the hospital with the hopes of being accepted for a lung transplants and received a tracheostomy. We grew closer to our PICU family spending our Halloween and Thanksgiving with them but we got to spend our Christmas at home. It’s been tough! The tears, fears, sadness and loneliness that has been part of this journey has been the biggest struggle of my life. For 2019 all I could ask for or want is Time. Time to be home, time with my granddaughter, son’s and daughter. I want my FAMILY!!!!! I want nothing more than to enter 2019 with better health, peace and happiness. Leaving the sorrows, doubts and pain in 2018. I refuse to deal with unnecessary issues and attitudes. HEALTH, FAMILY and PAYING IT FORWARD 2019!!!! #GLOWFORROMAN