Connor was born a healthy baby boy at around 37 weeks due to a very complicated and dangerous pregnancy. After Connor was born he grew and thrived like any newborn should. At about 5 weeks of age Connor developed a very serious case of RSV and landed himself into the hospital for 10 days. During that 10 day period Connor was unable to feed and lost a good amount of weight. I was hopeful that once the RSV cleared he would continue to grow like he did before. I never could have imagined what was next for us.
Throughout the next year of Connor's life he grew sicker and sicker with various and worsening respiratory disease and failure to grow. He continued to dip in his weight every time he became sick. During this year Connor was hospitalized more times than I can remember. Each time our hearts would break because we had no idea what was going on with our little man.
After a year of trying to figure out what was going on with our little guy I became so frustrated that we just couldn’t help him. I decided that I needed to do something and I needed to do something NOW. I am his only advocate, I am his mother. I decided to make the call to MassGeneral Children's Hospital in Boston. I pleaded to talk with someone right then and there and not be passed on to voicemails. After a handful of very tearful conversations we were driving to Boston the next day.
We have been receiving care in Boston since April and have made more progress with them than anywhere else. Granted we do not have a concrete answer for what is going on we have discovered a few key components that contributed to his illnesses.
On May 16th it was discovered that Connor has a cleft in his esophagus that was causing to aspirate his fluids into his lungs. This was something Connor was born with and was causing him to get ill and always have fluid in his lungs. On May 20th Connor underwent surgery to repair this cleft. I was a hopeful Mom again and just prayed that this surgery would solve everything. Once again I was wrong. We found out on July 10th that Connors surgery has not taken and if his fluids are thinner than honey it once again goes into his lungs and may need to have the surgery again. During that week in Boston we also were told that he has may have some underlying metabolic disease that is affecting his pancreas and his absorption of nutrients and that is why he can’t gain weight and have chronic diarrhea. That he also suffers from low muscle tone and thin skin which has caused some delays in his development. We were just discharged from a 3 day stay in the hospital on August 1st due to his chronic diarrhea and he once again lost more weight. I am hopeful and pray every day that we can find a cause and treatment for our Connor. He deserves to live a healthy life.
It can take up to a year to fully diagnose a metabolic disease and we are constantly traveling to Boston for care. We currently live over a 100 miles from the hospital and each travel is a huge expense for our family. Our travels consist of various hotel stays, gas, tolls, food and taxi fares. We are also having issues with our insurance company refusing to pay for his prescriptions and medical care so we are left paying out of pocket for these expenses. We are a family of four living on one income and fighting for our son.
If you have ever had the pleasure of meeting Connor you would know that he is a fighter and that no matter what he is going through he always has that cute little smile on his face. We are not the type of people that like to ask for help but our little guy needs it and we want him to be able to continue to fight and for us to fight for the care he needs.
We are headed back to NYC for Thursday. Unfortunately there is a new large area near his incision that is breaking down and he's extremely swollen. They are worried about an infection. We have started him on some antibiotics to help fight any infection that he may have.
Right now they do not want him in his brace which puts him at risk for ruining his fusion. They think that the pressure from his brace is causing this.
I will keep everyone posted as much as possible during this time... I am just at a loss. I was just hoping and praying we could get through this with no more bumps.
But leave it up to Connor to continue to flash us his infectious smile through the pain. He's my hero!
We also want to say a huge thank you to all that have either donated to Connor or sent him and our families special gifts. They all put a smile on his face.
I love seeing how his story has traveled. #ConnorStrong
On Monday Connor finally underwent the brain surgery we have been fighting for him to have. The surgery lasted 9 hours and unfortunately they were not able to do everything they had hoped due to complications with his dura.
Connor was immediately taken to the PICU and was on a breathing tube and sedated for a few days. Once we thought it was going to be safe, Connor was able to come off the vent and go to just oxygen. We have hit a few complications with surgery and break down of his incision but we have also hit some pretty incredible milestones for after brain surgery.
We were finally transferred out of PICU yesterday after he was finally able to walk after weeks without walking!!
We still have a long road ahead with a lot of rehabilitation since Connors neck is now fused. He will have to undergo intense feeding and physical therapy.
But Connor is a fighter! He never a gives up.
Please contact Angel Flight New England. My father is a volunteer pilot for them Angel Flight will arrange transport to Boston via plane at no cost to you (the private pilots all donate their time and planes and their are land angels that will drive your family to and from the airport to the hospital. Message me for any more info. Check out their website to get the ball rolling. I pray for your strength and courage.
In Boston there should be a Ronald McDonald house for parents of sick children in the hospital. My sister lived a long way from the hospital her sick baby was in and lived there for 13 months returning home only 2 nights. And it was free. She told me how nice the space was and how friendly everyone had been to her.