Home Sweet Home – Our New Life With The Trach!

I have been attempting to write for nearly a week now, but ever since Jameson came off of the vent and his sedation meds he has been keeping me busy from the time he wakes up until the moment he falls asleep!  And now that we are home I have been running around after all three boys from sun up to sun down.  And I can’t complain!

Life is good – so good!

I cannot tell you what it feels like to watch Jameson sleep peacefully at night.  Amazing doesn’t even cover it – and I honestly don’t think he’s slept this good since he was around a year old.  His first sleep study at 9 months had him sat’ing in the mid-high 80’s.

The past week he’s been sleeping peacefully at 98-100.

It truly makes a difference.  Jameson is still Jameson – stubborn, and fiercely independent – but his demeanor and disposition has definitely improved.

His hyperactivity and his aggressive behavior has definitely decreased, he can sit and focus for an extended period of time.  Before the surgery it was like we were living with the Tasmanian devil.  I am not even kidding when I tell you that every single day when Jameson got off the school bus he would throw his backpack in the street, run into the house, if there were any papers on the counter he would sweep them on the floor, throw his shoes across the room.

Seriously, he was a complete mad man at times.

Last night we actually were able to sit down an watch an entire movie together.  Before, we would have had a million interruptions with Jameson getting up to do this or that, climb on a counter, open the fridge, climb up the pantry, I mean anything BUT sitting down on the couch.

Frank and I had a moment where we just looked around the room in complete disbelief.

One of the big things on a lot of our minds was how he would handle having a trach during his day to day.

Would it bother him?  Would he try to pull it out while he was throwing a fit (he can get a little feisty ;))?

He hasn’t tried to pull his trach out once!  (I really hope I am not jinxing it by sharing that either!)

He very delicately lifts it in and out of his shirt when he gets dressed, and from time to time picks up the pilot balloon, but not in a tugging way at all, just to look at it.  Although he has started to find the Velcro on his trach tie, but the most he’s done is taken off his HME during a fit and thrown it across the room (I told you — feisty).

It seems Mr. Independence has started to get into his own routine.  During trach care, which we do in the morning before we get dressed, and in the evening before bed he is very calm and lays nicely for me.  He lets you know throughout the day if he wants to be suctioned – but it’s mainly turned into him coughing into his HME, taking off his HME, and asking to suction out the inside of his HME.  That’s almost always followed by him asking or trying himself to put a few drops of saline down his trach.

I am SO proud of how he had handled having a trach.  Jameson is my Pfeiffer-strong!

That has been our new home life.

Looking back the two weeks we spent in the hospital already seem so long ago.  Mostly because life with these boys is nonstop and there just isn’t time to sit and think about.  The minutes and hours seem to fly by.

I sat down to write a post the day we came home from the hospital.  I made it about a paragraph into it before I got swept away by the demands of being a mom.  It was a much more emotional post.  The last week in the hospital was extremely difficult on all of us.  We didn’t see eye to eye with some of the staff that was taking care of Jameson.  At the end of the day it seemed that liability was more important than the actual patient.  I’m sure we made some people mad and frustrated.  But, hey, it’s my kid, not theirs.

I was so emotionally drained, I honestly was ready to say enough, and just pack our things and walk out the door with Jameson, regardless if we had discharge papers or not.  Sitting around a PICU all day with a child that is no where near ICU status was, by far, the most difficult part.  Adding what I’ll call hospital shenanigans on top of that just compounded my emotional toll and completely drained my tank.  There were moments I felt like I was banging my head against a brick wall.

But honestly, that was all just a drop in the bucket.  Part of me realized that at the time, and I knew that it would all be over soon and we would be back in our own home, and the frustrating moments would all become a distant memory.

There were so many amazing people taking care of Jameson.  I can’t thank the nurses, RT’s, and doctors that were there to help Jameson recover.  We truly met some amazing care givers that were so good to us!

The last time I posted I talked about the ambulance conversation I had with our transition physician.  Well, I lost that battle, lol!  Frank and I both fought very hard on that one, but at the end of the day there was no budging.  I felt, and still feel so bad that people had to take time out of their day to drive us all the way back to San Antonio.  They were all so great, and were amazing with Jameson.  They brought him play-dough and watched movies!  They were simply fantastic, and I cannot thank them enough.

But nothing beats being reunited together as a family again!

It wasn’t just hard on Jameson, it was hard on Jackson and Jasper as well.

There was a point when we had to leave Frank and Jameson so dad could complete his training and Jackson was so upset he asked for 10 minutes and told me he needed to be alone.  The hospital was empty so I let him go out to the courtyard where I could see him from inside.  When he finally came back in he told me he just needed to talk to God by himself.

I nearly cried right there.  I know that when Jameson is older he will know that he never went through any of this by himself, that we all walked down the road together.  My boys may fight like cats and dogs, but they do love each other underneath it all.

And Jasper – well Jasper and Jameson were so excited to see each other they tackled each other and wound up on the floor!  I tried to get everyone to take a quick photo together for Father’s Day, but there was no slowing these boys down once they were back together!

 

 

DSC_0303

Jasper Duke!  Happy to see us!

 

DSC_0306Hug-tackle!

 

My silly boys!

 

DSC_0334Jameson refused to look at the camera – and I am a hot mess, lol! 

But, we’re home!

DSC_0344Look at all this equipment!

20160625_130816Back into the groove! There’s no place like home!

 

 

Thank you again to everyone at Medical City Dallas Children’s PICU and to Michelle and Sheryl, the nurses who rode with Jameson all the way back from Dallas!

 

 

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