Team Mason Angels
Mason is 3 years old and has battled since birth with TracheoBronchoMalacia which caused 100% collapse of his airway resulting in spending most his first 2 years in the ICU and on a ventilator till he had a 13 hour airway reconstruction at Boston Children's Hospital where he successfully came off the ventilator. About 10-20% of patients require anterior (front) trachea surgery to prevent any collapse 6 months post op. Over the past month Mason's trachea has begun collapsing again and on 9/14 his surgeon discovered the front of his trachea is fully collapsing causing him to stop breathing. On Tuesday, September 18th, Masons airway became collapsed and required our normal protocal of emergency interventions however this time was unresponsive are stabilizing and required 911 services to ensure he was fully stabilized. It became clear to his home team and Boston team his surgery is more critical than initially thought and he is number 1 on the priority and cancellation list for surgery that will hopefully happen in October. Children from all over the world come to his surgeon at BCH for this very condition every day. It is a very stressful time for our family to travel and remain by his side. This surgery and recovery is expected to be 5-7 days long and shorter in length than his previous operation. The past 3 years of constant medical emergencies, long hospitalizations and several operations have taken a significant toll on our family, emotionally, physically and especially financially. Dad has used all his paid vacation time for the year though has a very supportive compassionate employer and employees who help in every way they can which we are beyond blessed to have. Mom juggles 4 clients through a virtual assistant position though is only 30-40 hours a month while caring fulltime for Mason and his sisters while Charlie works many times 7 days a week. Our family has accepted many sacrifices have had to be made in order to keep up with bills and unexpected hospital trips and doctor appointments, though it is not a life we all hoped for but make the best of it. It has been a very long, traumatic road getting Mason the best care available. Mason is a fighter, his sisters, Mom and Dad will never stop fighting for him to one day have a functioning airway that will no longer require a trach or traumatic medical interventions to help him breathe. We appreciate all the support Team Mason has given since he was born and hope you can stand strong with us and help off set the additional costs that come with travel for surgeries and appointments, time off work, additional food costs when we can't leave the hospital, and giving his 4 sisters some pleasant fun activities to do as his brother recovers and help them process the scary times.+ Read More
Thank you to everyone still following Mason's journey and staying positive for us. Ent that first was involved with Mason at a few days old scoped his trach and airways above his trach yesterday. They saw the area of collapse and granulation tissue right at the tip of the trach. Everything from nose down to trach complete collapse still. While the moment was agonizing to watch , somethibg beautiful came from it. Mason fought them! All 3 doctors had to hold him still because he was swinging his arms, turning his head away and kicking them away! That was amazing to see. What an amazing response!! His neurologist came in right after and was so impressed with his progress and said airway issue aside, he looks great and has made the progress we expected. She got responses from him she didn't 3 months ago. With the discussion of surgery, she feels if his team at Boston can fit him in the schedule or wants to intervene now, she will clear him for anesthesia. While we know he will regress, we know his airway can kill him. It took his life for minutes before and she doesn't feel it would be fair to mason to not give him a chance to finally have a fully stable airway and also it's crazy to expect him to exert so much energy to breathe and do a lot of therapy work. We will know more Monday hopefully. If it is still not his time to return to Boston, we have back up plans to continue rehab at a different facility in CT where he will be able to access equipment and therapy unavailable in N.Y. because of insurance. None of these plans are set in stone but we will keep being patient and doing whatever Mason needs and we hope you all can continue to support us on this journey.
As of this afternoon Mason is back in the ICU at Yale on support after another episode yesterday requiring bagging and oxygen. We knew his airway was not stable and that was confirmed once here. His airway is collapsing more now in the area his team knew eventually needed more repair. Tomorrow the icu will talk with Boston and decide if it's safe to work on him yet. This is certainly not the road we want to be going down again. It's scary when doctors say they are putting a vent order in and you are so numb to this that you say yup ok.
It's been some time and Mason has been hard at work in therapy and giving his brain time to heal. This road is long and we are repeatdly told its all about time. We remain hopeful. His legs are still very hard to stretch out and are close to becoming stuck. While we remain hopeful we also remain busy. Very busy with splitting our time in NY for days on end and trying to not lose income but it is unavoidable. Mason does amazing things for us when we are there with him. He is struggling with his upper airways and still in limbo awaiting his TBI doctors to tell Boston whether he is neurologically stable to go there for his Boston team to evaluate his airway. He is needed to remain on a trach collar for 28% o2 and moisture. His oxygen drops to 60s when he cries or is in pain and nurses are needing to now enact emergency rapid responses suddenly. On top of this his current rehab is feeling that is progress being slow and insurance now limiting what they can provide him NY for services and equipment, they are looking to get him transferred to the HFSC here in New Britian. Our hope is to continue treatment even if they have nothing to add at least continue while we wait for him to be cleared for his next upper airway reconstruction. This has been exhausting. We have much more on our plate as his sister is receiving long term care 8 hours away. I'm not going to explain those details here to protect her privacy and safety but many that know us know the grace circumstances. We are trying to avoid loss of work but even missing 4 hours equals 1 utility bill. Days that require us both to be traveling leads to a devastating blow financially then more stress. As the school year comes to an end we have much to celebrate though we are still grieving. My oldest is graduating and will be attending Uconn in the fall to work on a major in Physics. I want to spend time with our girls as much as possible because this life is chaotic. We want to celebrate their amazing accomplishments but we know that the dramatic life changes are taking every ounce of us. Mason turned 4 on the 18th and it was bittersweet. I cried while decorating his hospital room and cried when he didn't see the decorations. There is so much happening all at once and we are drained. We appreciate the continued support so that we don't have to sacrifice continued inpatient rehab and the recovery it will bring.
Mason has had an eventful week. While he did well with therapy on friday, he woke from a nap miserable, in a lot of discomfort, and once again a very dry trach despite the humidifying machine. On Saturday we changed machines and saw him break up more stuck secretions. Though on Sunday his trach plugged and he went blue and emergency response came in and cleared him. Balancing the physical recovery of the cardiac arrest and managing his airway is becoming frustrating. He needs to go back to Boston for the surgeries to remove the trach but he is making progress with his therapy. I worry at some point in the next coming months he will need to go back and forth from ny to Boston and back to ny. Maybe as the weather warms up the hospital room will be less dry but for now it is very much a problem. The world is certainly changing for us as we try to give Mason the best chance at bouncing back.