When Jadon was first diagnosed with SMA, having trach surgery was not part of our care plan for him. Looking back, we know that initial reaction was based on fear. Fear of the unknown. Fear of having a tube sticking out of his throat. Fear of not understanding what a trach meant. Just plain FEAR.
As you know, over the past several months Jadon has been having severe respiratory distress episodes causing his heart-rate and oxygen levels to plummet to the point where we are wondering if “this will be the last time.” A feeling no parent should be faced with. Not to mention, these episodes are very stressful on Jadon’s little body – something we don’t want to put him through. After much research, speaking with other amazing SMA families and a lot of prayer, we have decided to schedule a tracheostomy surgery for Jadon the last week of July in Madison. This is a big decision – one we haven’t taken lightly and haven’t come to quickly. This is what is best for Jadon at this time. We firmly believe that each parent must make their decisions based on their child and their family. And this is exactly what we have done.
So what does the rest of our summer look like?
Well, we leave for Minneapolis on Wednesday (June 20th) for the Families of SMA Conference. We are extremely excited to meet and connect with so many other SMA families. They are anticipating over 1,100 attendees from 21 countries – WOW!
On Monday the 25th our big boy turns three years old. (How cool is that?) We will return to Kansas City with a three year old on the 26th.
Jadon’s surgery is scheduled for the week of July 30th. We will be inMadison for at least two weeks (who wants to watch some beagles? :)).
Jadon is scheduled to start pre-school on August 16th. Phew…. where did the summer go?
While I don’t consider this blog “bad news,” other than the fact that the disease is progressing, we are holding on to some really GOOD news.
You will have to check back tomorrow for the REALLY GOOD news. I can barely stand it.
My grandson, Charleston, was trached last month. Best decision ever!!!! You will love it, but mostly, he will love it. Good luck on your journey. It’s not an easy one, but it does get easier.
Big news???? Secrets???? Yippee!!!! Way to go Bug!!!!
We love you guys!
We love you and have been thinking of you guys nonstop.
We know you guys would NEVER make a decision about Jadon or his health lightly. I’m sorry you need to do this, but trusting it is the right thing for him at this time. You will all continue to be in our prayers. We love your sweet family.
Jadon is so lucky to have you guys as parents, and you know what’s best for him! And you have so many wonderful families in the SMA community to turn to for trach advice and help! I know you’re nervous now, but I pray like many other families you will be so relieved when he has it, and his quality of care will be improved. Thinking of you all!
Ok – I am waiting on pins and needles for the big news! What the heck have you guys been holding back?!!!!
Um don’t like waiting- at all. Not my thing. Seriously? Just sayin not cool…..