Friday, April 19, 2013


PreAdmission Clinic was our job for today.  Thankfully, we could eat breakfast normally, as none of the diagnostics today required sedation.  We were at the hospital at 7:00am and didn't finish until 12:30pm, so it was a pretty long day!

It was a tough day for Nate, with several unpleasant tasks.  He did well with all of the waiting in between, but the EKG was rough (shouldn't have been, but we had a tech with ZERO personality and ZERO kids skills).  I'm not a person who talks negatively about someone, especially in a forum as public as this; but I'm sorry, if you mess with my son, you mess with me.  Oh, I was frustrated, and not what I expected from a pediatric specialty hospital.

Well, that just got him wound up for his next appointment, a few minutes later, which was an echo (3D ultrasound of the heart).  I'll be honest, it was hard work for Don and I, for the entire 45 minutes, keeping him completely still (we're talking no wiggles allowed, and definitely no temper tantrums, lol!!)  as we were reminded often "very still"  "very important pictures"  "very still please" from the kinder and gentler tech.

At the end of 5 hours, we still had blood work to do, and that proved to be really difficult.  They didn't get as much as they wanted, but must have gotten enough to cross match, as they didn't come back....or maybe they were scared!  Just kidding of course, the two techs worked well and they at least got in on the first try.

Nate has had more questions today, and we've done more explaining on what is to come.  We'll continue to talk about it for the next two days and hopefully prepare him enough.  They will be giving him a sedative first thing when we report for surgery on Monday, so I pray that will give him a calmer perspective on the preparations and while we wait.

Good news is that we are FIRST on the list for Monday morning!  That will hopefully mean no delays, barring any emergencies that come in.  We report at 6:00am, and surgery is scheduled for 7:20am.

We had good conversation with many of the specialties today, and confirmed the plan with our surgeon, Dr. Rebeyka.  He will place a mechanical valve (an On-X valve if you're interested), remove the Pulmonary Artery band that was placed at Nate's first surgery and also place a conduit there if needed.  He will also place leads for a bi-ventricular pacemaker, but does not plan on connecting to a generator at this time.

Some of the same behavioural issues are intensifying today.  The lack of control that a child feels in most every hospital situation, leads them to want to try to control situations that they can.  It's a very fine balance parenting a child like this.  I'm not sure exactly how to describe this, but if you've been there, you know what I mean!

That's it for now!  Very thankful that Nate fell asleep quickly tonight, we're going to follow suit shortly!
Thank you for each prayer!!


Heather said...

You have been so on my heart and in my prayers today.
Lamentations 3:22-23
Because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning; great is Your faithfulness.

Anonymous said...

Thanks for the update. My prayers will go with you on Monday morning as Nate heads into surgery. May you have a restful and encouraging day tomorrow. "May the God of all Hope give you joy and peace as you trust in Him, by the power of the Holy Spirit" Romans 15:13

Ang Nickel