End (almost) of Day 1

There are a lot of things that are going really well!! In fact, you only have to think about all the things that could go wrong and you realize how many things are going well!

Right now, Nate is still on a cocktail is drugs, but is pretty stable. One concern is the fever that he is running. It went up to 40.1, but now, after dosing Tylenol and Advil it is coming down. It is unusual for it to climb that high so soon post surgery. They are running cultures to look into this. Another issue is that he is showing a slight arrhythmia. Still waiting to see if it will sort itself out. He is wired to a temporary pacer if needed. He was extubated at 6:30 and had been trying to mouth the words ' I am thirsty' with the tube still in. In the last hour he has been able to suck on a sponge, and after rounds that just happened he can start on some ice chips. They will try to lower his epinephrine overnight.

I am going to hang out here for tonight. Hopeful about great improvements in the next day. So many answers to prayer today. So overwhelmed by all of your support and your prayers. Thank you all so much. And thank you Jesus for the great things. He is doing here.

One pic taken about an hour ago.

In ICU

In ICU now. Keeping him intubated and sedated. Has a fever.

Update

Dr Rebeyka just came to talk to us now. He is very pleased at this point. Next 24 hours are critical and said not to relax just yet. He was able to place a 25 On-X valve, which is closer to an adult size. He closed the VSD - the hole was about the size of his pinky. He removed the PA band. He placed the bi-v pacer leads and tucked them into his muscle for future use. He also placed temporary leads to use right now, but Nate's rhythm is holding well right now. They are just closing him up now. Thank you Jesus

Now we wait. Please pray for this next critical phase. Thank you for all the prayers till now!!!

Day 1 - He's in...

After a pretty restless night (Nate was up for 1 1/2 hours, pleading his case to drink milk, and not the clear fluids he was allowed) we got up at 5 and got ourselves ready. We did Nate's final soap wash down and walked over to the hospital before 6am. Everything was right on time (big answer to prayer) and Nate was happy and talkative down in the clinic. The sedative was bad tasting and ticked him off, as did the numbing cream on his hands. Soon, it kicked in as as they wheeled us up to the 3 rd floor, he seemed more relaxed as he played his ipad.

I took him into the OR right after 7am, and stayed with him while they determined whether to do an IV start or to start with gas. They decided on the gas, and while we talked and played ipad he drifted to sleep, but not before his big brown eyes locked onto mine.

Now we sit and wait! Just got hooked up on the hospital's wifi so we can update as we go now.

Our child life specialist really urged us to take lots of pictures, not only for Nate, but so Brady can have a bit more understanding of everything Nate is going through, and will explain why he may act a bit different when we get home, or be more grumpy and tired. So here are some up to this point.

The Night before...

It has all come about so quickly, the countdown of days has now turned into hours.  So hard to know what to say.....not sure where to start....and where to end.  The thoughts, feelings and emotions reach into the deepest part of my heart.

The day today was a little bit more stressful with some nosebleed issues from Nate.  My only guess is that it's from the dry air in the hotel room.  He had one nosebleed during last night, and milder spot bleeding sporadically throughout today.

My only response to the way that we've been trying to prep him for surgery tomorrow is that it is an answer to prayer.  He isn't displaying any real signs of nervousness or apprehension, but it's because I think he really doesn't get it.  But we also prayed that he wouldn't get worked up, or fight it either.  I explain things to him and he listens, sometimes says a thing or two, and then moves right on to finding his Lego piece, and changes the conversation!  I'm just going to take this response as an answer to prayer right now.

The days have brought moments of panic and fear.  I've let myself cry it out sometimes.  Mostly, I just pray and remember all of the verses that I hold dear. There are so many, and I really should put them all together in one place.  The peace does come.  I know God is doing something good in Nate, and I can't wait to see how each step of his life has been a part of the bigger picture that we just don't see yet.

So thankful for all of the prayers, and ask for them to continue.  We'll be at the hospital by 6am (Alberta time;) and the surgery is scheduled for 7:20.  I'll update as best I can and hope to get some pictures posted, too.

Now to him who is able to do immeasurably more than all we ask or imagine, 

according to his power that is at work within us, to him be glory in the church

 and in Christ Jesus throughout all generations, for ever and ever!  Amen

Ephesians 3:20-21

P.A.C.

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!!