There was a time when a trach change was no big deal around these parts. Then in April Parker underwent a trach stoma revision and tracheostomy changes became a really big deal. Like hold your breath and pray you don’t have to call 911 deal.
Parker uses a 4.5 cuffed Shiley trach tube. Before we could simply lube it up, switch ‘er out and the kid was good to go. Now it’s a major production requiring nerves of steel.
We wrap Parker to keep his arms contained and use a towel behind his head in order to get better access to the trach stoma and to make it easier (in theory) to actually insert the trach.
Then my nurse semi-straddles Parker to keep him stationary. This may seem like over kill , but considering it took 4 adults to hold this kid still in the ER during his last emergency trach change, I’m thinking just needing two of us at home is major progress.
Getting the trach out is still pretty simple. However, getting the new one in requires the determination only a Mama who is watching her son’s lips slowly turn blue can muster up.
We think the issue is with opening in his neck and the opening in the cartilage behind the skin not lining up. You have to get the trach through the opening in the skin of his neck and then wait for Parker to exhale and quickly try to line up the trach to the hole in the cartilage behind that skin, hoping he doesn’t manipulate that cartilage to prevent you from getting the trach tube placed.
Trust me. It’s nervous making.
Three times we’ve taken Parker up to PCMC to have his ENT evaluate the latest trach change situation, and three times we’ve been told that it doesn’t warrant another surgery to try and fix things.
My blood pressure levels disagree.
Luckily, his ‘rescue trach’ that is uncuffed and one size smaller than his regular trach still slides in easily, offering us a temporary reprieve.
Parker has had several trach stoma revisions and we’ve never had an issue until now. It almost makes me wonder if the ENT broke our #1 rule of keeping Parker alive, which is: NEVER allow a Resident to use our kid to practice on. Ever.
After the dust settles and Parker’s oxygen saturations are back to normal, we all take a deep, shaky breaths while wishing we could all throw back a good stiff drink. Then we start stressing over the next trach change.
What part of your child’s cares do you find stressful? How do you deal with it?