Roman T.

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 x-ray 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 didn’t 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 I’m 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. It’s not good. Shands was contacted again, but they are still refusing the Transplant. However they wrote a letter of Roman’s 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 facility. Roman’s 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 it’s 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 Roman’s 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.

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, sons 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

December 22, 2020:

What a crazy year. Knock on wood we have dodged this virus! With being hospitalized back in August when Rome needed the blood transfusion and being sick the entire month of November with a cold and talk of contacting Texas again due to Rome being unable to tolerate a reduction in o2. This year has been pretty good. Still unable to get himself in a sitting position he can sit unassisted when helped up. He is starting to bring himself up on his knees and hands and can push himself backwards, only means he will be crawling soon. He is definitely a fighter! Yep sure is! Fights sleep EVERY NIGHT! Grateful for any positive progress though.

We are eager to close out this year and hopefully we can get back to normal? Kinda normal? And back to much needed therapy's. But for now we are perfectly content staying safe inside and snuggling in this totally awesome bed Chasin A Dream got Rome for Christmas. So on that note we send our love and well health to everyone!

January 26, 2022:

A long overdue update. It has been almost a year and half without a hospitalization (knock on wood). Within the last year Roman has begun to sit independently, army crawl and is just now starting to briefly put pressure on his feet. He passed a swallow study which means speech therapy can eventually work with him to teach how to eat and drink by mouth. Cardiology wise Rome is doing great! His pulmonologist is still amazed at how well Roman is doing considering the damage of his lungs. We have have even cut back on his breathing treatments and his pressure support has also been lowered. Which brings us to the meeting I will be having on February 2nd in regards to Roman's evaluation for a double lung transplant which we have been waiting 3 years for.

We were hoping to go to Texas Children's Hospital but it looks as if we will be staying here in Florida since one of the lead surgeons has been recruited to Shands Hospital in Gainesville where Rome had his heart surgery.

As soon as I get an update it will be shared with Lori who will pass on the news to everyone. When it comes to warriors, he has totally lived up to battling, stumping and proving EVERYONE wrong. This child absolutely lives up to his strong name.

March, 2022:

My sweet baby is out. Waiting on him to wake up and get an update. The surgeon did say that it's not his heart that is causing the lack of oxygen to his blood and that the pressure is only slightly elevated. So I have to now wait again for answers. As painful and upsetting as this is. It has taken 3 years to get here. It has been almost 4 years since we were here at Shands. When Rome had his heart surgery. At that time he was so frail they didn’t even think he would make it during surgery. Then the next year he was in and out of St Mary's, then a 8 month stay which is when a handful of hospitals were contacted for a lung transplant. Everyone backed out until Rome had a tracheostomy even Texas Children's Hospital that I had my heart set on for his evaluation. Well the surgery has literally changed Romes life. Here we are almost 5 years old, no hospital admissions for almost 2 years and I couldn't tell you the last time I asked to have antibiotics called in. This kid has proven everyone wrong and I have all the faith in him to continue to do so. I will never give up on him and plan on posting another update in another 5 years without a transplant. Since I was pregnant I was suggested to have an abortion simply because of his Down Syndrome, then to sign a DNR and even had hospice come talk to me. Rome had other plans and I said they can take all of the above and shove it up their ass! All 3 of my kids are amazing and strong! Just because Rome may be a little slower, he has proven his will to live and love. He his going to beat this just keep watching!!!!

Update September 28, 2022:

Last Friday we went to have labs done at St Mary which everything came back normal along with the stool samples I sent in. That is always fun. The bowel issue is finally under control and getting back to normal. Yayyyy.

The count down begins..... Monday morning we leave for Miami. Rome will be put under anesthesia again to have an MRI/CT of the cervical spine. I will give another update on the findings next week. Fingers crossed this was just some freak occurrence and will not require surgery. But we visited the updated dinosaur garden at St Marys. Which if you follow Rome, know that when we there basically for his first 2 years of his life, I would walk him around the hospital every day for 2 hrs. He loved the garden and 1 particular plant that I named Fern. Well, she is still there just a little thinner and yes Rome recognized her. The love is still alive ya'll!

I do want to thank Lori Griffith for finding Abby with Abby Can Help to drive us to Miami Monday morning. Thank you for always being there for Rome. Words can not express enough the gratitude. You are a true blessing in our lives as well as others.

Update October 2022:

Yesterday was a very long day. Roman had the CT and MRI of the cervical spine. Everything came back normal.

Rome’s spinal cord extends down a little farther which could be the reason for his right knee extending out. Not sure how that works but we will get an explanation from the orthopedic surgeon soon.

The drawing is pretty much what Rome’s spinal cord looks. Neurologically there is no explanation to the loss of control which he has gained back, but is it natural? or is it because of the Gabapentin? Still do not know.

We will be seeing a new Neurologist soon and will hopefully to be advised whether or not we are going to continue meds.

So as soon as Rome has the appointment with the Orthopedic and Neurologist I can give another update.

Chasin A Dream Gala 2024

Update July, 2024:

Roman had a chest Xray not too long ago. His pulmonologist was excited to tell me it was the best Xray Rome has ever taken and even looked clearer from all the rest which I even noticed.  I asked if we could get an updated CT which we had done last Friday.  Today I got the call. HIS LUNGS ARE IMPROVING!!!!! Yes the damage is still there but new lung tissue is forming!!! Yep I'll say it again. This kid is amazing. Keep watching he is going to beat this , he is going to kick this vent then o2 altogether.  May not be this year or the next but it's going to happen. I've always knew you had it in you. I'm so proud of you Mister Mister!!!!