Max’s Story

Site created on August 9, 2019

On May 21, 2011 our Max was born with Esophageal Atresia/Tracheoesophageal Fistula Type C - a fancy way of saying he was unable to swallow. His esophagus was in two pieces. The top half dead ended and the bottom half was connected to his trachea. The day after he was born, he was surgically repaired and has been able to eat  since. His esophagus doesn't work as quickly or as well as everyone else's, but it works. His trachea, however, has become more of an issue as he gets older and more active.  Max has an EA/TEF related condition called tracheomalacia - a soft, floppy airway. In Max's case, his trachea is collapsing 100% when he coughs or if his airway is working hard (i.e. when exercising, during hot/humid weather,  if there is smoke or other irritants in the air, etc.).  Throughout his life he has struggled with frequent pneumonias and episodes of not being able to breathe. The episodes became so frequent in spring of 2019 that James and I reached out to Boston Children's Hospital to see if they could help our little dude. After a week of testing, scopes and doctor's appointments in July 2019, the answer was YES. They can help. Here is where we will update you - our dear family and friends - on our journey with Max. Thank you, all, so much for the support. We couldn't get through this without you!

Newest Update

Journal entry by Kelly Kirk

I am in utter disbelief. Yesterday, in an effort to keep him moving, I told Max to walk three laps around our cul-de-sac.  He came back in from his afternoon laps and told me "Mom, I ran the second half of the first lap and the whole second lap. I walked the third." First of all, I never told him to run. He did that of his own volition. Second, he RAN one week post op! I asked him if it felt any different and he said "usually I'm out of breath half way through one lap, but I could do a whole lap and a half!" You guys. The docs said he wouldn't be healed for 4-6 weeks post-op. We are ONE WEEK post op and he can already feel a difference. I am in shock. I can't wait to see what he does a month form now. He also rode his bike and played outside a bit tonight with neighborhood friends which did so much for his morale. 

Max is dying to see all of his friends and get back to school so he is going to try going back on Monday. He may not make it the whole day and that's ok, but he wants to try. I've talked to the school nurse and she is on board. He'll check in with her throughout the day and let us know how he's feeling and/or if he needs to go home. He still has some pain in the night, but during the day he's doing really well. 

Until next time!
Kelly
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