Describing your child

Niff · #1 10-18-2009, 11:43 PM

For the first time since Mackenzie was trached, we had someone describe her by a characteristic completely separate from her trach or any other medical condition. We were in the ED today (twice to be more accurate) and when Andy told a nurse he was looking for his daughter - as he had to run out to the van and when he returned we were already in an exam room - the nurse said, "Oh, the little blonde girl?" It took Andy by surprise at first and he wasn't sure if the nurse was talking about the same "little blonde girl". Sure enough she was. We both found it very sweet and reassuring.

((Although I'd like to point out it's strawberry blonde - fyi

))

Sometimes it's the little things that really make your day and put a smile on your face.

lynn · #2 10-18-2009, 11:45 PM

nice to hear someone could look past the trach and see the girl

But, the more important fact left out~ why were you in ED again???

bryantem · #3 10-19-2009, 12:24 AM

I am starting to notice more that people don't usually notice the trach until I say something. Usually it is because she sounds "snotty" and they ask if she has a cold. It is nice to see people notice the baby and not the trach.

Niff · #4 10-19-2009, 12:30 AM

Quote:

Originally Posted by lynn

nice to hear someone could look past the trach and see the girl

But, the more important fact left out~ why were you in ED again???

I'm sure you've read it on FB already, but don't want to feel like I'm ignoring you so here goes...

During Mac's first bolus of the day her button "fell out". Literally it was one of those turn your head for a second and the thing is laying on the floor type moments. I couldn't get it back in, and while I could get her back-up in (that's the wrong size but can work if need be) I wasn't getting any residuals or gastric juices back on it when I checked placement... so I put the regular one in as far as I could and taped it down, and off to the ED we went. The doc managed to get it in fairly easily (of course - she has to make me look silly). We weren't sure if there was actually a hole in the balloon - we inspected but didn't find anything wrong with it - or if the new night nurse checked for residuals the wrong way (hey... it happens!), so we just stuck with that button. A few hours later, the button falls out again and while we can get it in I was afraid of changing it out because our spare is thicker (a 14fr compared to a 12fr). So we decided to take her back to the ED incase we couldn't get the back-up in. We definitely made the right decision with the second trip because the ED doc couldn't get the spare in, and after quite a bit of trying he inserted a foley cath and waited about 20min before trying again. It finally went in, but I was super glad I didn't attempt it at home.

Of course, Andy's suggestion the second time it happened was to tape the button and extension in place and take her to UNC (our children's hospital that's 2hrs away but usually a 3hr drive b/c of traffic) tomorrow.

I told him I wasn't going to MacGyver a feeding tube. LOL

And in between both trips to the ED, Mackenzie managed to pull her trach out. We officially win the "trach parents of the year" award because we didn't even notice it was out. She and I were babbling back and forth, and Andy and I were impressed with out well she was vocalizing. She was smiling and really humming along!! It seemed like she was actually trying to immitate my sounds which is a first. Something told me to look closer at her trach and sure enough it was out. Dang trach!

Livi's_mama · #5 10-19-2009, 12:57 AM

That's really nice, especially since your daughter is more main streamed.

For us, they usually describe one of us...is her mom a redhead? or the nicely dressed black gentleman? (heard that a few wks ago)

LOL

Niff · #6 10-19-2009, 02:37 AM

Quote:

Originally Posted by Livi's_mama

That's really nice, especially since your daughter is more main streamed.

For us, they usually describe one of us...is her mom a redhead? or the nicely dressed black gentleman? (heard that a few wks ago)

LOL

Okay I'm clueless and feel silly for asking... but what's "main streamed" mean??

JWorthington · #7 10-19-2009, 04:05 AM

It is lovely for a child to be seen as a person, not a disability, or a piece of medical equipment

.sorry you had to go to emergency, sounds like you've got a little monkey on your hands there, but it's good that she seems able to manage without the trach, all very positive

Myself · #8 10-19-2009, 09:49 AM

Heartwarming Niff!

Best,
Lisa

saywhatyouwill · #9 10-19-2009, 01:32 PM

ah, niff, what a lovely post :-)

TommysMommy · #10 10-19-2009, 02:25 PM

Love hearing about somebody seeing the child and not the trach!

And for the record...I MacGyver'd Tommy's feeding tubes many times. The only way we could get a new one was to go to the ED (don't get me started on trying to get DME to send a spare), so if the pumpset kept popping out (from stretching the port), it was tape, diapers, and finally an AMT clap to keep the sucker shut. Tommy's never popped out, but he was on aspirin therapy and no matter how finely ground or how much water I mixed it with, once a month we were in the ED getting a new one because the aspirin clogged up just inside his tummy. Nothing in, nothing out. Nothing like trying to start a midnight feed and having to drag all the kids to the ED for a new tummy tube.