Oliver The Great

We welcome Oliver’s mom as a guest blogger today to share her story.

Oliver was born on July 2, 2015. He was born two months early along with his twin, Tristan. Oliver has Down Syndrome, a large VSD, ASD, chronic lung disease, and severe Pulmonary Hypertension. He has been in the hospital more than he has been at home, however, that is soon to change.

His last stay in the hospital lasted more than eight months. He was admitted to Children’s in Knoxville on December 8, 2015 and was incubated on December 9th. He was only admitted for a respiratory virus which only got worse and worse and worse over time. He missed his first scheduled surgery date to repair his heart.

On Christmas 2015 he had a pneumothorax; meaning his right lung had collapsed and two days later his left lung collapsed. So his lungs were very damaged and weak and at the time that made surgery impossible. Today, he has been diagnosed with severe CLD caused by intubation in the hospital.

He was finally transported to Vanderbilt. They did a heart cath to determine how bad his pulmonary hypertension was. They determined it would make surgery very risky, but he would need it to live. He had heart surgery on February 4, 2016. The doctors said within two weeks he should’ve been ready to be extubated. However, he only continued to get worse and have horrible, scary PH episodes that would sky rocket his blood pressure and heart rate. We watched his vent settings continually get increased. They were maxed out pretty much. Because of the high settings and the amount of time he was on the vent, his lungs were damaged even more.

The first week of March, after another cath, they determined there was nothing left to do to his heart. He was moved to the medical side of the cardiac unit, after we were told palliative care was most reasonable given his condition (not to us). Instead, Pulmanary started a new medicine called Remodulin. Within two weeks we started weaning the vent settings. Soon after he was low enough to get a trach with vent attached.

On April 8, 2016 he received a trach and Gtube. This was one of the hardest days of my life. Seeing my son for the first time with a big piece of plastic in his neck made things so real. I knew my son was so sick and fragile, but seeing that trach made it real. While it was a hard day it was a good day. My son started feeling better within weeks. We went from not being able to hold him much due to being intubated to holding him all the time. He was able to move and develop muscles. He was just happier. Doctors are saying he will be on the SubQ Remodulin for life, along with possibly needing the trach. His pulmanology team has hope over time that we can wean the vent to where he doesn’t always need it. This is where we are currently.

Oliver still has a very long road ahead. Although we were told by many doctors more than once Oliver would never leave the hospital- here we are at home going on a year. We were told he may never reach his first Birthday and in two months he will be two.

There are times I look at him and think how good he looks compared to several months ago. Then there are times I look at him and am so saddened. He went into the hospital only needing a half a liter or less of oxygen; now he requires a trach and ventilator to live. Sometimes I just can’t wrap my mind around how this happened. But at the end of the day I thank God this little boy is alive and still fighting. He truly is the strongest person I know. He is 2 years old and endured more than most adults have ever had to endure or will. There are days he’s in so much pain that I cry, and he can still crack a smile and melt my heart. Please continue to pray for this little warrior.

Oliver and Tristan’s cake was provided by Sugar Angel Barbara Reed with Bianca’s Designs in McDonough, Georgia. Oliver’s mom says, “The cake was absolutely amazing! The baker even added a trach to one of the characters like my one of my twins has! Everyone at the party was in awe of how well done it was. To top it off, it was very delicious.” Thank you Barbara for all of your hard work and dedication to Icing Smiles. We look forward to seeing more “smiles” from you in the future!