Skip to main content

Too Busy to Post!

So sorry for the lack of posting.  I usually only post late at night while I'm waiting for the nurse after Abby is asleep, and the past few nights, she's been really hard to get to go to sleep.  We have such a good routine going with the 9 p.m. bedtime (hooking up the vent and monitors, starting her food, putting pjs on, etc.) that I'm pretty sure it's been pain that has been throwing her off.  Last night, she didn't fall asleep until 11:35 p.m.!  Needless to say, there has been no blogging the last few days!

Other than the late night pain, Abby has done incredibly well post-op.  While we do have a prescription for a strong painkiller, we haven't used it since she got home from the hospital.  In fact, she hasn't even had any Tylenol since last night at 9 p.m., and that dose had been one of only three she'd had since she'd been home!  It's pretty amazing how tough she is.  You would never know to look at her that she just had a fairly major surgery three days ago.

It's not that we're against using the stronger painkillers, but we want to make sure that it is extremely necessary and that Tylenol has already been tried.  It's a pretty heavy-duty drug to just give every 4 hours around the clock for a week.  Apparently, that's what most parents do.  I would if I feel like we needed to, but I really don't see a need for that.  Abby is doing just fine.

Below is the progression of pictures from before surgery to right before we headed home.

In the pre-op room



We had such a hard time keeping her awake so early in the morning!

In her cute little hospital gown

In the PACU (recovery room) right after surgery...fairly pitiful, huh?  (The black mark isn't a bruise.  It's a marker they use to mark the body part to be operated on, so that there's no confusion.  I could understand an arm, a leg, or even an ear...but the head??)  Her lips and mouth were all cut up from the mean things they used to hold her mouth open (I don't want to think about it!) and her nose was bloody from the surgery.  Poor baby!

She was so incredibly out of it.

She got the no-nos taken off for the first time and was loving it! 

I got this toy from the playroom and Abby adored it.  The tube over her trach is what they call the "trach collar."  It is used to provide humidified air so that she doesn't plug up, because hospital air is different than regular air.  She could never be on just her regular filter in the hospital because they were afraid she would plug up.  None of us cared for the trach collar very much.

All bathed, the wires are removed, and I'm just waiting for discharge!

She cried when I took this toy back to the playroom.

Does she look like she just had surgery the day before? 

Comments

Anonymous said…
A trach collar does not humidify air at all, in fact it's not even part of the tubing but rather a collar around her neck that keeps her from yanking out the tracheal tube inside her trachea. No offense but I'd suggest a little research before posting such erroneous information. Also, good grief woman give that poor child some good pain relief, she deserves it. A little oxycodone will not have her addicted, she just had surgery, she's in pain and that's why she's now falling a sleep much later. Your child deserves to be pain free especially after going through all that she's been through and to have to deal with therapists and all, I mean c'mon have mercy on her. She might have a high tolerance for pain but it does not mean she's not in pain. I only tell you because I'm very passionate about kids and because I care enough; your friends might not tell you this because they don't want to start something but I care about Abby's wellbeing and you not giving her pain meds is just appalling, cruel and unacceptable for a mother or any human being. Please reconsider, Thanks.
Julie's mom said…
This comment has been removed by a blog administrator.
Anonymous said…
Ever since I read your post Anonymous one, I have felt compelled to respond. After a super-quick Google search, I found this helpful website that defines a trach collar--there seems to be two types--one that you mentioned that serves the purpose of keeping the tube from being yanked out and one that Julie mentioned, which aids in humidifying the air. Julie was not giving the readers erroneous information, just talking about something different than you were familiar with. Please see this website for more information: http://www.birdville.k12.tx.us/instruction/ss_web/special_services/images/health/Current_HealthForms/Section_IV/tracheostomy_collar.pdf or this one: http://www.tracheostomy.com/resources/more/trachmanual/index.htm#humid

Also, everyone is certainly entitled to his or her opinion, but the way in which you inserted your anonymous opinion was very mean-spirited and rude. I know that Julie and Matt certainly want the best possible care for their daughter and love her very much. If they thought for one second Abby was in any pain, they would not hesitate to give her medication. Perhaps you have some medical knowledge, but no amount of classroom experience replaces the knowledge a parent has about their child. Julie and Matt know their children better than anyone and are extremely involved in their care. You should know that by now!

Amy (the very loveing and slightly protective older sister of Julie)
Anonymous said…
I meant "loving"....whoopsie! I have been having technical difficulties posting all afternoon and have been flustered!
Anonymous said…
I have been a nurse for over 15 years and the first thing that comes to my mind when someone mentions trach collar is exactly what Julie described. Also when medicating for pain it is perfectly normal to start with the least strongest med and re evaluate before moving to something that would be overly potent and may cause negative side effects. If Abby's parents or nurses caring for her saw signs or symptoms of intense pain I have no doubt they would use sound judgement in chosing the stronger medication. If the negative commenter has been reading this blog for long at all he/she would have known better than to leave such an untrue comment. How sad.

Popular posts from this blog

Cerebrocostomandibular Syndrome

If you happen to pick up the latest Reader's Digest, there is an article in there about Piper Breinholt , a four year old with CCMS.  If you've been around here a while, you'll remember wayyyyyy back when we first received Abby's diagnosis that I was able to speak to Piper's mom, Reagan.  The article is more about their story and not as much about the ins and outs of CCMS, but I think it's probably enough to get some people googling it and I'm hoping a few will end up here. Every once in a while, I give a blog post the title of Cerebrocostomandibular Syndrome so that it would show up in Google.  My ever-present hope is that people will stumble across my blog and 1) be encouraged by the hope we have in Christ, 2) feel a connection with someone in a similar situation as them, or 3) get excited over the miracles that have been performed in Abby's life!!  (a combination of all 3 is great too!)  :)   Notice that it's not to get famous and it never wi

Bath Time Photos!!

As promised, here are lots of photos of Abby's first bath. Caleb was supposed to be in bed, but the bathroom is right next to his room... "I'm not too sure about this..." Once she learned how to splash, she was all smiles! Her first good hair wash! Gotta protect the trach! She really liked getting water poured on her head.  It was cute! Smiley (and bubbly) for Daddy while he dried her off. All clean!!  (Note the Lysol wipes in that last picture.  They are NEVER far away!)

Imagination Movers Photo Recap

Seriously, The Imagination Movers were so much fun!  They played lots of their own music, with some classic rock mixed in for the adults.  There were also quite a few jokes and references to Baltimore, which was kind of fun.   The whole night centered around this robot named Rock-o-Matic, or "Rocko."   This is Mover Scott, and he wears Wobble Goggles that help him see new ideas.  Caleb and Abby have a pair of goggles too.  :) There are 4 main Movers that are part of the TV show, but they have 2 extra movers to play instruments and do back-up vocals in their live tour. Abby finished up her feed before the show started so that she would be free to dance! My dancing queen did NOT want to sit in my lap.  The row in front of us was empty, and that is where she stood almost the entire show--dancing the night away. My Imagination Movers  Caleb did his share of singing and dancing too.  He knows most of the words to the songs, so