Tuesday:
Even though we were only the second appointment of the day we wound up waiting over THREE hours in a teeny little room for Parker’s ENT and Pulmo to make their appearances.
Three hours in a teeny, stuffy room does not a happy Hero make. Especially a Hero who on the way up to PCMC decided to develop a fever.
The verdict? A September 10th appointment for another FEES study. If it looks as though Parker’s gag reflex is making it’s way back……we’ll be celebrating!
If not, we’ll be looking at a surgery to partially tack down the Brave Hero’s epiglottis so that each and every little bit of saliva no longer dumps directly into his lungs.
Cause the aspiration pneumonias are getting a wee bit out of hand over here.
Why surgery over Botox, you may be thinking?
Well, even if you are not, I’m gonna tell you. (Cause I’m still trying to convince myself that I’m making the right decision.)
A permanent issue require a permanent solution. And if by now the gag reflex isn’t regenerating itself, it isn’t going to. The reflux (that everybody kept telling me wasn’t happening) will have done irreversible damage.
Damnit.
With surgery, Parker will be able to take small amounts by mouth again. Something we know he would love to do as evidenced by this:
Note to self: Yes, your kid CAN climb up on the table and attack the rest of your birthday cake.
Thursday was spent hanging out in the hospital while my Dad had two new stents placed in his heart. NEVER eat at Cafe West when hanging out at the hospital in Provo. Trust me on this one, k?
Friday was a repeat of Thursday. Minus the Cafe West experience.
Saturday was spent hanging out with the Beautiful Blue Eyed girl and hitting some sweet yard sales.
Our loot included:
CUTE pairs of jammies for Parker. The cost? TWENTY FIVE CENTS a pair.
A brand new from Disneyland sweatshirt. It was too small for it’s original owner. I then picked it up for FIFTY CENTS.
Here’s Parker modeling his pair of TWENTY FIVE CENT Halloween jammies. Yes, my kid wore Halloween jammies in July.
Don’t judge me.
I didn’t get to spend time here last week. Which just might explain why I’m feeling so tense and grouchy today.
Sooo…..tell me about your week/weekend!
About Tammy and Parker
My kids are still wearing Christmas jammies and will continue to wear them until they grow out of them. lol Love the cake picture. He is looking more grown up lately. Too cute!!
From that cake picture is it obvious that if he gets the surgery Parker will be excited to eat food by mouth. Little ones always manage to get into everything don’t they? My nephew is still wearing Christmas Pjs so, no shame in wearing Pjs out of season. As long as they’re comfy, right? Good job on the yardsale loot! Keeping your family in my prayers always.
-Sarah
Twitter: mamikaze
says:
my kids were watching Home Alone this morning. and they wear shorts in the snow, go figure!
Twitter: therextras
says:
I hope that the ENT and pulmo doc were busy saving another child’s life. Too.
Please don’t second guess yourself, Tammy.
Hope you read this after a couple of hours in the garden.
Smooches.
Tammy,
I would actually like to hear more about this surgery. This may be something that we are interested in for Christopher. While his PH has resolved, the damage has been done both by the PH and reflux. Plus, his lungs are deformed anyway.
If you do this without a trach, would he still be able to talk?
Hugs!!!!
Steph and Christopher