Why Max needs a Trach 

We have mentioned before on the blog that Super Mighty Max’s ENT and Pulmonary doctors recommend that he needs a tracheostomy or Trach to breathe and function.  We have said “No” time and time again because we want to see how he grows.  If he will grow out of his severe tracheomalcia and be able to cough up his secretions.  However, now at this present moment I think he may need one.  Let me explain.

Last week my husband Brandon had two job interviews.  He has been out of working a second job for a year, being Super Mighty Max’s primary care taker.  So, we took Max to daycare during that time Brandon was interviewing.  Super Mighty Max’s system couldn’t handle being around kids for those two days plus the change in weather going from 20F to 70F did not help.  He came down with a common cold and he physically can’t cough up any secretions from the cold.  The results are mucus build up into an infection, fever, and not being able to breath.  We ended up back in the ER and shipped away to the Pediatric Intensive Care Unit on high flow oxygen, so he doesn’t have to work so hard to breathe.  Remember we were just here in the same hospital in November for the Flu and in December to start his special seizure diet the Ketogenic Diet.  Spending a lot of time in the hospital around other sick children and children with trachs makes me think he may need one.  

Super Mighty Max has no problem breathing when he isn’t sick.  Which is why Brandon and I have said “No” to a Trach.  But when Max gets the slightest sniffles or drainage it can turn really bad very fast.  Hince why we are back in the PICU on oxygen.  I now understand why the ENT and Pulmonary doctors recommended a Tracheostomy.  So the question remains do we elect for Super Mighty Max to have an invasive surgery when he doesn’t have a problem breathing when he isn’t sick?  Or do we keep him in a bubble from October to March?   

No one wants to see their child suffer, and it really makes me consider doing this surgery.  All we both want is for him to grow, thrive, and reach his full potential.  What we aren’t sure of is if a tracheostomy will help him or hinder him.  With a tracheostomy comes more specialized care, treatment, and nursing help.  All of which we aren’t prepared for, but we weren’t prepared for all of the care he needs now.  

Join us in prayer as we make this decision of to Trach or not Trach Super Mighty Max.  

Stay Super, Make Mighy Moves, and Be Blessed! 


Posted on February 2, 2016, in Maxwell's Story. Bookmark the permalink. 2 Comments.

  1. My son was beside your son in your latest PICU stay, I overheard his nickname “mighty max” and I thoroughly enjoyed the sweet hummings of amazing grace by his grandmother. What courage you all have given me from reading your story! I imagine you are still close by somewhere in CHKD, we are still in the PICU going on day 9 tomorrow. God bless You all and I plan to continue to follow you and your mighty max. I gain strength from your amazing story. God bless


    • Kelsey, were you in the room that was enclosed- you, your son, and husband? If so, we do remember your family. Yes, we are still here in the hospital, on another floor now. They say he may go home tomorrow, but I’m not sure. Maxwell’s great-grandmother is a jewel who loves to sing. I’m praying that your son will be released soon, we understand long hospital stays. We will be praying for your family as well. Thank you for reading our story, my wife and I write to provide encouragement and inspiration to other families, so thank you. Again, praying for your family. Be blessed!


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: