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Team Mason Angels

$7,498 of $12,000 goal

Raised by 175 people in 5 months
Created September 21, 2018
Team Mason
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.
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Another week has come and gone, another holiday, and we are still waiting for a bed to open at the rehab in NY. This week has brought us some good moments. The granuloma in his trachea has shrank from the medication to a size of no concern at the moment but being watched. His wrist braces/splints have been ordered and fitted because we are losing range of motion of the wrist. The first fabricated pair insurance prefers did not fit so customizing had to be done. I have been trying to take some more time at home because being in the ICU 12-36 hours at a time is mentally taking it's till on me. Charlie is some how staying at night, going to work, later than we'd like, then going back for the night. Over and over. Mean while I am spending time with the girls and really working my business - TheModernBaglady.com where my blog includes my Business and shop link, catalog and updates on daily life with Mason. Mason will be getting his eyes checked finally tomorrow. There's concern for his optic nerve and muscles behind his eyes. Hopefully pre-existing astigmatism and mypoxia has not worsened. Thank you to those who continue to pray and support us in many ways. We continue to need support in any way.
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Mason is keeping us on our toes as usual. With last week's scope showing granulation in his trachea, we have been nothing less than worried. Granulation tissue in the trachea can become very dangerous. For Mason, it can change faster than typically. It can cause a blockage to the trach and that because a major emergency. After 7 days of treatment to hopefully shrink it or prevent the rapid growth, ENT will look down his trach tomorrow or Tuesday and will update his Boston EA team and if it hasn't resolved or has gotten worse, they will give a plan.
His heart rate and respiration have been significantly elevated from his baseline for several days so we are watching. We are in some respect excited for rehab at Blythdale in NY, but it will be weeks before a TBI unit bed opens. This means weeks more of constant trips back and forth and work constraints. As a family we endured a very traumatic experience during Masons cardiac arrest. I have never been shy about how important attending to your mental health is. We have a tremendous about of support for each one of us. My personal goal is to work more with my therapist in the upcoming weeks to try and process the emotions of grief as the transition of hospital to rehab hospital begins, while also dealing with the haunting memories of the event that plays over and over in my head, watching it play out in front of me like it's happening again. The nightmares make night time hard to look forward to. Many moments of Mason's journey since birth haunt me but through tremendous mental health support I have processed them and now this time has a dozen sub pieces making it a bigger challenge. I remain mindful and grieve when I need to. Staying present when processing this is key. I think we need more hours in the day. This is all exhausting. It seems more stress keeps adding and the length of time seems to be sluggish. It will be 2 months next week and I wonder how much I can juggle every day. I do though because the hope and faith I have is enormous! Your prayers, words of encouragement and donations in all forms really do chip away at the crushing boulder I feel on my chest every day.
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How quickly life changed. Just hours before our lives changed forever we happily made our yearly family gingerbread house. We saw him climb, smile, run, sign night night, wave as he ran to his room. Do not take a single moment with your children for granted. Be amazed with each step they take, every hug they give, every sound they make , every accomplishment big or small. I wish I could feel all those moments. We have traded those moments in for long days and nights in the icu, driving back and forth to juggle all his sister's lives, putting anything remotely related to our own needs on the back burner because the small window of time we have is to sleep. We now await a rehab bed in new York to open and know the drives will be ruthless, the back and forth will be more chaotic, and exhausting. And with all the hope that Mason will regain some of what he lost.
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First of all, thank you to each and everyone of you for your donations supporting Mason and our family through his battles. There has never been a second since birth that we haven't stopped fighting along side him. I remember the first time he coded in my arms less than 2 days old like it was yesterday. I now sit here and try and console him through the irritability and frustrations from the brain injury and it feels 100x harder than watching him struggle before. We were given a beautiful gift this past year of seeing Mason over come all the life threatening moments and obstacles put in his path. Though at times I often wondered if it was too good to be true..was this the most he would ever thrive, only to be reminded by everyone how well he was doing and was going forwards finally. I imprinted each moment with him in my brain trying to memorize the feeling of watching him smile and run and climb on my lap. I can't feel them anymore and the sheer thought we might not ever again scares me. It brings me to tears. Each day as we work towards getting him into a rehab I try staying in the moment but I realize for the first time since birth I will be far away from him. I have to entrust complete strangers to help my little boy push forward with the strong chance he won't gain a lot back. Tuesday we are heading to Northern Massachusetts to tour another rehab and Wednesday heading to Westchester to tour another. We may have several more weeks before a in network can accept him and we are praying in the most selfless way that if so, then we hope insurance will approve the out of network over 3 hours away in Massachusetts. We have additional rehabs in NJ and Long island to consider when we hear back. We struggle daily with the idea of not being by his side every day but we know he needs so much help in order to begin his next set of surgeries in Boston and come home.
On Friday his legs were casted for custom AFOs again and we are having them expedited rather than the 2-3 week wait. We are determined to do all we can now while in the icu, when he is in rehab and once home to give him the best shot at recovery and being comfortable. This all still feels like a dream most days, a very bad dream. We will all keep fighting with Mason.
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$7,498 of $12,000 goal

Raised by 175 people in 5 months
Created September 21, 2018
Team Mason
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