The Verdict Is Trach

It’s funny how your brain and heart work together; or in some cases without each other.  For over the past year I have mentally prepared myself for Jameson getting a trach.  What’s more, is that I am an RT, I personally take care of people that are trached on a daily basis.  My mind has been prepared for this moment for a while now.

But despite what I thought, my heart had not yet joined the party.  Even though I know, without a doubt, that getting a trach is going to save and prolong Jameson’s life, I’m not ready to watch my boy change again.

I have been playing back the moment that my body felt the earth move today.  As I heard his ENT say, “Ok, there aren’t any more options, let’s do the trach”, I felt a pang in my gut and a lump in my throat the size of a golf ball that I wasn’t prepared for.  I looked at Jameson and saw where they are going to cut into his throat and just felt it inside.  I felt defeated because I know this will be a painful surgery.  I felt defeated because we have to welcome a new intrusion of medical care and upkeep into our lives.

Jameson is going to change again.

This will change him.

He will be limited by this.  And that kills me inside.

I cried driving home from Dallas.  I tried to let my heart catch up to my brain.  I envisioned the process;  the surgery, the aftermath – trach’s are miserable things in the first few weeks.  I envisioned the fear that Jameson will have, the long hospital stay that we’ll have- this will be the toughest recovery yet.  I thought about how it could affect his voice and how far he has come with his speech.  I thought of the times I have cried to myself watching him struggle to breath at night.  I thought of the times I have cried with worry what his OSA is doing internally to his body.

And then I envisioned the healed trach; the restful nights of sleep he will have; the happiness he’ll have to not wear his CPAP mask anymore.

I envisioned my sweet boy thriving.  The best vision I could have.

And I knew again, we’re definitely not defeated by this.

Jameson puts his CPAP mask on each night, but every night he asks, “No mask tonight?”.  He sleeps for two hours and the mask comes off.  He sleeps/snores/struggles for a few more hours.  Then he gets out of bed and finds me, and for what’s left of the night I try to sleep as I listen to him gasp for air.  Morning rolls around and you can’t wake him up.

We can’t possibly be defeated by something that is going to stop this nightly ritual of madness.  All we’re really doing is swapping one medical intervention for another (better).

So, no.  We’re not defeated by this at all.  It’s a setback for now.  We’re going to have to modify some of our summer activities.  Jameson won’t get to go swimming anytime soon.  The beach trip we were planning is going to have to be seriously reconsidered for at least this summer.  And little boys and a trach!  Oh my goodness. This is going to be the quickest longest summer, lol!

My heart is catching up.  Such is a mother’s love that we want to shield our children from undue heartache and pain.  My brain knows this is for the best, and it’s reaching out a hand to help my heart along.  But, I know deep down it won’t actually catch up until we’re on the other side.

I have seven days left to love the Jameson I know now.  I have seven days to prepare myself for the Jameson I’ll know after this surgery.

We’re planning on surgery for next Thursday.  I am comforted by the fact that underneath it all, Jameson is Jameson.  Although I’m preparing myself for a slightly grumpier version for a few weeks, I know the silly, happy Jameson will be back before you know it.  Right now it feels like there’s so much to do with so little time.  I do have so much to update, he had an MRI a few weeks ago.  Bottom line is that he looks good for now, but my eyes were opened yet again to what normal is for these kiddos.  He got a haircut (well he cut his own hair to begin with), you can see in his pictures from today.  I switched to working the night shift earlier this month, so I have been really out of touch with real life, or so it seems.  But, I’ll update again soon!  xoxo

 

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I take a picture with the caterpillar each time we’re there.  It’s been two years since we saw the caterpillar!  He wouldn’t sit still for a picture this time 🙂

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7 thoughts on “The Verdict Is Trach

  1. I will pray that these changes will help Jameson, that he will heal quickly, and that mom gets the sleep she needs!

  2. Cut his own hair? Well he’s creative. 🙂 And he is always cute!!!!

  3. I so enjoy your reading about Jameson and your family’s journey. I too have a daughter with Pfeiffer Syndrome. We had to have a trach. She finally out grew the need. But what an adjustment it was. Elizabeth was also seen in Dallas, Medical City Dallas. She is a patient of Dr. Jeffery Fearon. He has a wonderful team. Elizabeth is now 28. The child they told us wouldn’t live 24 hrs. Please continue to share your journey. We didn’t have this community when we started ours. Prayers for Jameson and all of you.

  4. Jameson will always be Jameseon and himself. I believe that Jameson will rebound into recovery so fast it will make your heart spin and yet once again. stop.

    1. Above all, that cute angel knows he is loved. And not just by you. He has an army of devoted fans who want the best for him. His life is an inspiration to us adults. Just thinking about him can make me smile.

  5. As a father of a little boy, I would like to say how much inspiration you give me reading you. Lots of love from the bottom of my heart all the way from Brazil.
    And to little Jameson and my Thomas a world full of possibilities, creativity and Love!
    João (John) Guilherme

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