Monday, April 27, 2015

In typical Abby fashion

This morning, Abby was in so much excruciating pain that she just sobbed and couldn't even stand by herself for a minute.  The OT was really concerned that she wasn't making a lot of progress.  

Fast forward a few hours to when the PT came in.  Abby got out of bed, took a few tentative steps, and decided to walk halfway around the unit to the playroom.  That's so Abby!!  :)

She's still needing a strong hold on my hand, but this is a HUGE step for her.  The playroom is so motivating!  We were going to walk back there tonight, but she fell asleep in the middle of putting a puzzle together with me!  I think she's probably out for the night!

The pain team is in the process of transferring her over to oral pain meds now that she is getting more food in her belly.  I'm encouraging Abby to eat preferred foods and just putting the pediasure through her tube for now.  I have learned that pushing the pediasure too soon will cause her to be completely turned off to food completely.  

She is still sleeping on cpap and showing that she needs it.  The pulmonologist doesn't want to ake any major decisions about her future with cpap until her pain meds are decreased, but he warned us that there is a good possibility that Abby will go home with it--maybe short term, maybe not. If it's only at night, it won't affect our day to day life too much except that she won't be able to spend the night anywhere while she is on it.  Cpap really isn't what we want, but I just go back to we've done a trach and a vent.  We can do this!  

Sunday, April 26, 2015

8 south

We moved up in the world!  Well, to the 8th floor at least!  We've settled into our new room and even got to see our very favorite CHOP nurse for a few minutes!

We are on the Pulmonology floor, which is a great place to be.  The team here decided Abby needed to be on cpap tonight.  She will be off during the day, but we still need to wean her at night.  Given that she's on cpap right now and her oxygen levels are just at 91, I think this is a really good idea.  I'm still hopeful we can wean her from it before we leave, but we will deal if they can't.  

Abby was in a lot more pain today now that her pain ball catheter is gone.  I pushed the button a considerable amount and she still wasn't getting much relief.  I'm going to talk to the pain team tomorrow to see what we can do, because I want her to be able to keep moving around.  She's sleeping soundly now though, so hopefully she will last all night!

Post op day 3

Abby has had a big day so far!!!!  She got her drain and pain ball catheter out, her Foley catheter was pulled, she is off the cpap while awake as long as she does ok, and she got out of bed for the first time!  All before 12:00!!!

She went from the bed to a chair when she got out.  She didn't really walk at all and was heavily supported, but it was just nice to see her upright for a second!  She is now allowed to sit in the chair 3x a day for at least 30 minutes each time.  Tomorrow, we may try working on taking a few steps.  They brought us a tiny little wheelchair to sit in as well, but she's not cleared for going anywhere just yet.  

Pain wise, she is still having spasms around hour 4 or 5 after getting the Valium (it is given every 6 hours).  They added another pain med that we will give in between Valium doses, so I'm hoping that will help keep her comfortable.  It's sad to see her arching her back and kicking her legs from the sharp pain.  We just have to figure out the right combo to keep her comfy.  

Abby is also cleared to eat now!  I ordered her a variety of things, hoping to entice her with something....all she has eaten is 4 goldfish.  It's a start!  She is drinking apple juice like a champ though, so that's something.  

We have been playing princesses and she is acting like her normal cheerful self!  I love it!!!

Saturday, April 25, 2015


Abby was allowed to sprint off of the cpap for an hour!  She did really well, which means they will increase the time next time.  Typically, they double the amount of time for each sprint:  1 hour, 2 hours, 4 hours, 8 hours, 16 hours, and then off.  Sleeping will most likely be the last to be weaned.  As long as Abby needs cpap, we will be in the PICU.  

We are also working on increasing the volume of the pedialyte to get to the amount we typically give her (65 mls an hour).  

She's been much more awake today, and has started to play with toys a bit.  We all enjoyed a visit from our pastor Dario, who was incredibly sweet to drive all the way here!! He brought Abby some pretty cool toys that she loved!

The physical therapist got Abby to sit up again today.  She is more alert now, so we are able to get her sitting without a therapist. At this point, she can sit unassisted for 3-4 minutes.  

This surgery completely changed her anatomy, so she has to relearn everything--starting with how to sit upon her own.  We are hopeful that she will be able to walk at least short distances with a walker by the time we come home.  We knew all of this going into the surgery, so we are prepared for a long recovery.  I'm just not sure she was!

Like I keep telling Abs, each day is getting a little bit better!


Daddy out on a puppet show for Abby's enjoyment! :)

It worked!

Post op day 2

Last night was a million times better!  It was a boring night.  In the hospital, we love boring!  Abby had a bit more pain this morning with some muscle spasms, so we started Valium to help with that.  She's been pretty comfy and is currently sleeping for the longest stretch yet!  I wish it were happening at night, but I'll take it at this point!  

She's been off of oxygen since yesterday afternoon and has done well.  They weaned the cpap down a bit and we are hoping we can trial her off of it this afternoon.  She's done well with the reduction so far, so we are hopeful.  I know she would love to get that awful mask off of her.  They have also started pedialyte and we will start trying some oral foods when she gets off cpap.  

Everything is heading in the right direction!  One day at a time.  Thank you for your prayers!

Friday, April 24, 2015

I'll never get used to it

"Code blue, 7 south, room 21.  Code blue, 7 south, room 21."

I look up in alarm as ten staff members take off in a dead run down the hallway.  The alarm continues to repeat the location as more staff members head that direction.  

I'll never get used to it.  Somewhere down the hall, someone's child is fighting for his or her life.  Next time, it could be room 6.  Somewhere, there is a mom praying that her child will make it.  Tears roll down my cheeks for her, because I've been there.  The image of 15 staff members crowding the room to attend to my daughter as her oxygen levels plummet will forever be sketched in my head.  

And I know that up and down the hallway, there are moms and dads just like me praying for the situation, but silently thanking God that it wasn't their child.  

This time.

Because, you see, parents like us--we live in the woods with our kids.  They are never truly "out of the woods."  We have just learned to find beauty in what the woods has to offer and make the best of it.