Friday, August 17, 2007

Let's Blow This Popsicle Stand



So...there's this rumor around the PICU that we are headed home tomorrow! SHHHH!!! We can't let Kate know....she has a tendency to change our plans when she gets wind of it....it's a very hush hush topic in Room 8. She's staying in the PICU until dismissal, even though there are rooms now....the staff as takin' quite the liking to this little girl....as much as we can't wait to get home...we'll miss all of the staff.

The staff have been "training" me in her medications: unfortunately she is coming home on 9 different medicines...YUCK.

2 for her heart (keep her blood pressure down & for her rhythm problems)
2 for her drug withdrawal (those will be done in a week)
2 diuretics (to keep the fluid off of her body/heart)
1 for her reflux
and Iron and Potassium

They PROMISE me all these won't be forever...and with each monthly visit to the cardiologist he should reduce or eliminate different meds! YEAH! So...I've had my training and they have rearranged the schedule so it is much more home friendly. Thank goodness, cause I don't' want to be up at 4 am just to give her medicine. And...Gayle and I had to go on a nice drive to find this special pharmacy that would dispense her Methadone and Ativan for her drug withdrawal. Evidently these are very "controlled" drugs and only certain pharmacies carry them.


And, this afternoon, she had a hearing examination. This is a routine check for kids with 22q chromosomal deletion, as hearing loss can occur. The good news: all her hearing is completely in normal range...not that we had ANY reason to think that it wasn't. PRAISE GOD! However, the test was absolutely ridiculous. First they had to stick several monitoring devices in her ears to make sure her ear drums were moving and sounds were bouncing back. Then we went into this little dark, sound proof scary room. Our trusty nurse Jessica was with us. Her job was to keep Kate distracted and looking forward....WITHOUT making any noise! YEAH RIGHT! Kate was on my lap and the audiologist would make certain sounds at different decibels and frequencies and watch for Kate to turn her head toward the sound. Then....if she did...she was "REWARDED" by this black box that lit up and a very scary Chuckie like stuffed animal that banged a drum. It was creepy for me and Jessica...I can't imagine Kate. This went on for over a half hour! Kate did well for the1st ten minutes...but after that...she was SO DONE with it! But....she passed, and that is all that matters.

She is drinking whole milk now...no more "formulas." YEAH! She has been a little cranky/uncomfortable today...but it has been a busy day. She just needs a good night sleep in her OWN room! Tomorrow...my sweet girl....tomorrow.

My buddy Jack (Gayle's son) stopped by tonight...I gave him a hard time since I didn't have his picture with Kate...so he came back for his photo shoot!

It's been a crazy day for Gayle and me (as well as Kate)...we didn't get lunch until 4:30. CRAZY! So...one more night in Sleep Room B! Is it really coming to an end? Can it be so?

4 comments:

Anonymous said...

So glad to read about the great progress of Baby Kate! We had been on vacation the past week and was eager to read up on Kate.

We understand too well the back to school routine that Andy has started! Just wait, before you know it Seth and Kate will be in that same routine! They do grow way too fast!

Hope you do make it home in the next few days. We will continue to pray for Kate's continued progress and also for her Grandpa Layman to do as well as her!

Kelly & Jamie Smeltzer

Anonymous said...

I am so happy for all of you. I have been following along daily if not hourly to check on Kate's progress. I pray that you will be home tomorrow. Anita Bates

Melissa said...

So glad we are down to counting the hours! I wish I could have taken care of Kate tonight, but could risk jinxing her and making her stay longer! We don't have the best track record, you know! ;o) Will miss you guys, but I promise to stay addicted to this blog!

Anonymous said...

WOW! Home tomorrow! Praise God!
You must be "over the moon" excited about getting home and having your family all together again. Praying that Kate's dismissal and trip home will go perfectly.
It was fun seeing Jack's picture. It has been a long time since we've seen him.
Blessings,
Carol M.