You can thank Karen's Mom!

Tap tap tap....Is this thing on?

I feel a little bit foreign even being on this site.  It took me a couple of minutes just to get logged in, forgetting so much of how I used to do this!

Why am I here?

Good question!  I cannot believe the passage of time since the last time I wrote.  But in the last year, more frequently than I ever imagined, people have asked me about the blog and why I wasn't updating anymore.  I've felt the nudging to get back to it, but just didn't have what it took to get back on here.

But then Karen's mom happened.😄

A sweet message passed along to me, through my sister, gave me that encouragement to do it!

I know there are so many people who have invested much care and concern, love and prayers to our family.  We could not have navigated these years without each one of you.

Where have I been?

Although we have not had major surgeries or illnesses, the last number of years has felt more intense than before.  I'll share more as it feels right, I'm sure.  But to try to summarize, here are some of developments in our family:

• Nate has been diagnosed with a lung disease.  He has areas of bronchiectasis in one lung.  This was discovered after years of different kinds of testing, and finally confirmed through lung CT and bronchoscopy.  This means new daily 'at home' therapy with 7% saline nebulizer treatment and breathing/lung physiotherapy. 

• Nate's heart function has been good!! 💗 His left sided ventricle (right ventricle) is still somewhat enlarged.  He has had some very brief arrhythmias, but we've never been able to capture them.  His mechanical heart valve is doing its job and the Warfarin (blood thinner) has been keeping him safe, even though those levels can fluctuate quite a bit and require frequent testing.

• Brady is now 11 and entering Grade 7, Nate is 9 and entering Grade 4.  With Nate's growing awareness of some of the things that make him special and unique, comes some tough realizations that he has begun vocalizing.  This has been difficult.  To see him so unhappy and upset and saying he wished God didn't give him his special heart is hard.  It isn't fair to him, that he has to do these hard things and Brady doesn't have to.  Brady continues to be protective and keeps Nate safe wherever he is.  Brady also will duke it out and have very typical brotherly interactions with him!!  Nate gives it back just as well!!

• As for me, dealing with the emotions and day to day life of our Braveheart is consuming and mentally demanding.  I stepped back from my position at work, and now work only a couple of hours a week on my own time.  This has been a good move for me.  Mornings were too unpredictable with health issues and therapy time, and this change has given me the flexibility I needed.  We try to keep our life pretty simple and not filled with too many extra activities.  

So, here I go again!  This is just our story.  With mess ups and fails along the way.  Hopefully some fun laughs and victories, too!

Here's a snap from our summer holiday!  Enjoying the incredible Niagara Falls!

 

6 Weeks...

Well, we've made it to the 6 week mark!

It's been pretty quiet here on the blog.  No excuse;  just the reality....we've been in the trenches.

And now that we're starting to see a glimmer of life post surgery....life that is becoming a bit more 'normal' and a bit more tolerable....I can now admit how tough it's really been.

It's been all around tough.

Appetite tough...
Going out in public tough...
Medicine tough...
Mentally exhausting tough...
Blood test tough...
5 yr old needing control tough...
Marriage tough...
Simple things tough...
Overwhelming tough...

I think you get the idea :)

But how can I complain, when Nate is here....with us!  He is doing well!!  I am so thankful for the incredible progress I see, as recently as the last week.

Taking his meds is now routine - dare I say easy?  A far cry from having two adults and 4 arms holding him down while shooting in the nasty stuff to the back of his mouth.  We've got a routine down pat, that includes his favourite chips and his beverage.  So what if he's eating chips after breakfast!!  I'm also not having to be a chemist - crushing and mixing and 'hiding' his Coumadin everyday.  He's chewing those pills (again, with Doritos - but I'm not complaining!!) and that has been such a relief!

His finger pokes are still never fun, and I do like to make sure my windows are closed before doing the poke (it can still get a little noisy :) ), but the frequency has decreased, which makes it much easier.

His appetite is still sketchy.  We have not had a normal breakfast or night snack in 6 weeks (normal being cereal, toast, etc.), but really - so what if he's having pasta for breakfast....it's all carbs anyway!  Cooking meals has been frustrating, as I do try to cater to his tastes, often to have him take one bite and promptly tell me he's full.  Or demand an entirely different meal.  You will understand my willingness to cook according to his needs, when you've been in a situation where zero food is going in....you'd do just about anything to get him to eat.

His energy level has improved!  Now that the majority of the healing has taken place, it's time to see how he will tolerate activity and endurance.  At this point, Don and I both agree that his energy level has improved from pre-op.  Even in just the last week, I've been so impressed with his desire to be active and the progress he is showing.  He still knows when he's tired, and self regulates his activity.  But we've come a long way, from even a few weeks ago, when I was doing a LOT of carrying him around!

Through it all, Brady has been the most awesome Big Brother.  He is so keenly aware of Nate and his activities, and is always the first to ask Nate if he's okay.  In the first few weeks post-op, when the boys were playing in the yard, Brady came to me and said he thought Nate's heart was ticking a bit too fast.  Another time, when Brady wanted to go play ball at the school yard behind our house, he got out a lawn chair and brought it to the field for Nate to sit on and watch....it was a sweet moment.  Brady has taken these difficult weeks in stride....never complaining when Nate would get all the attention, or exceptions to many rules.  When Nate would be having one of his (very common) fits of rage, Brady would often come and whisper some advice in my ear....it was usually an idea to calm Nate, to give Nate something that would make him happy.  And often he and I would just exchange a little look with each other, smile, and nod knowingly.  As yucky as those moments were, Brady could understand that Nate was just dealing with some tough stuff and responding in the only way that he could at the time.

And we've been surrounded by so many that love us all so much.  It's hard, for the ones that love Nate so much, to see him dealing with such anger or fear.  I know they all would do anything to make things easier for us in those times.  It's maybe even harder to be the one who wants so badly to carry the burden, to ease the hurt, than to be the one in the trenches.  We have been carried through by each prayer, each kind word.  We are so thankful to each one of you!  Thank you for loving us - and for loving Nate - especially when he didn't return the love.

We had another cardiology appointment today.  And today, Nate behaved like a charming, sweet and kind little guy.  Do you know what a relief that is, to be able to take that component of stress out of the equation?  So thankful.  As far as the appointment, no news is good news in this case.  We're going to change up some of his meds and see how things go in the next two weeks.

One thing that I've learned of myself, as a heart mom, is that I find great satisfaction in the technical details.  I don't like the 'layman's terms' in regards to Nate and his health.  Give me details and use the real words.  I suppose in the very beginning, the simpler terms were better, but now... bring it on.  Side note:  I had to inwardly chuckle during a particular rounds while in the PICU in Edmonton.  The doc was taking his residents through quite late one night.  After one of the residents presented Nate, the doc went on to do quite a intense grilling, questioning them, as to Nate's particular heart complexities, L-TGA in general, reasonings behind treatment, and implications of different parameters. Oh my - I just had to hold my breath as this conversation went on at the bedside.  Truly, I was rooting for them to answer the questions correctly, the silence while waiting for any of them to answer was painful!!  I just wanted to whisper under my breath and give them the answers they needed.  Anyway, I like details, and I know some of my heart mama's might be interested as well, in some of the details, so here are a few:

• Nate was on bypass for 123 minutes, an aortic clamp time of 72 minutes.
• A 25mm On-X mechanical valve replaced the severely regurgitant left AV valve (Ebsteinoid like)
• A Medtronic dual chamber epicardial pacemaker was implanted, with leads capped and were tucked away behind left rectus sheath (no generator implanted yet).
• The VSD that was closed was the diameter of our surgeon's pinky....how's that for detail?!?  Lol, it's the best info I got!!

Sweet surprises.

Isn't it just like our God to send us little surprises to brighten our day!  We've been talking about Kingdom Moments in church recently - and we've had a few of them!!

Just one example:  After a bit of a rough morning (after Don had left for work) getting Nate's meds in and doing his finger poke, and getting him happy - or at least compliant enough -  to head to Brady's school at 10:30 for their Spring Concert, Don called me after lunch and gave me a little patch of God light for the day.

An envelope, addressed to us, was sent to Don's work.  In it was a card with beautiful words that touched us both.  Someone that we don't even know, but is a friend of our friend (that's you, Shawna!) had heard about Nate and was following along on our journey through this blog.

In the card were also instructions to use the gift they sent to go out for a meal, and treat Brady and Nate to special treat.  When I told Nate about this person, whom we didn't even know, but knew all about him and his operation.....and wanted to do something special for our family - and that HE could pick the restaurant for supper, you should have seen his little face.  His eyes got big and looked at me excitedly, and yet he was trying SO hard not let his mouth turn into a smile.  He didn't succeed - and soon that cute little smile broke through his lips.  I told him that he could tell Brady about the special surprise and he did that with pride and excitement.  He picked his favourite Winkler restaurant - Twisters!

So, to the dear one, who made my boys day today, I thank you!!!

Tomorrow we head back to Winnipeg to the heart clinic.  It seems like we were just there, but it's been a week already.  He still had some fluid around his heart last week, and hopefully the echo will show that it's been resolved.  They'll also do blood work after the echo, and get our INR machine calibrated to the lab's INR results (please pray they get enough blood this time).  His INR numbers have been a bouncing around a bit.  From too low at 1.9  late last week, to too high at 5.0 on Sunday.  The sweet spot is 2.5-3.5.  But I suppose this is to be expected at the start, especially with the sporadic diet he had at the beginning, which has been increasing (changing the absorption of the warfarin) to getting a method of having him ingest the whole dose (my kitchen counter is turning into a drug lab as I crush and mix pills and try to hide them in different drinks, etc.!)

Thanks again for your love and kindness - for your prayers, emails, meals and hugs!!

Love you all!

Day 8 - Snowy morning in Edmonton

INR levels are up this morning, very good news. Still waiting on an echo and the thrombosis team to figure out what the plan is. Thought I'd post some pics from the last few days.

Day 7 - morning update

We won't be going anywhere today. Nate's blood pressure was a little low throughout the night. He's pretty dry from extra diuretics that he's on. In the morning, he said he his head hurt. A little while later, (while I was giving him his Enox injection) his nose started to bleed. After that was under control and done, we started with his morning meds. As per usual, this continues to be a high stress thing for him, with a lot of fighting it. Of course, his nose started to bleed again. It took over half an hour to get his 3 medicines in. We gave him a little time to relax and snuggle, but then it was time to do the finger poke to check his INR. It would have been great if that could have been accomplished in one poke, but for a coupe different reasons (not enough of a blood drop, etc), I had to repeat this on four total fingers. Horrible mom. But we got it, and he settled down. The good news is his INR is finally starting to increase ( for those who are into it, it's up from 1.1 yesterday, to 1.6 today). We're looking for numbers between 2.5 -3.5. We'll do full blood work again today at noon (with the same nurse that was able to draw blood from him yesterday).

So, given today's events so far, we're not stable enough to go. And Winnipeg doesn't want us until we are stable, too. Mixed feelings of course. I could almost imagine giving Brady a hug this evening. But I'll settle for another FaceTime. Nate, too, is DONE with everything here. He's so tired of it all and just doesn't want anything here anymore. He has a list of a few things which are okay (blood pressure, temperature, listening, breathing exercises, lol!) but pretty much everything else is hard. The meds continue to be so hard, and he just doesn't understand why Dean's (the old name of our pharmacy back home - the pharmacist's first name, and what we call his medicine....all we say is: its time for Deans! and he comes running) can't be here. He laments continually. When I told them there is only one Dean, he says he wants there to be two Dean's. So that's a compliment in the highest form for Winkler Pharmacy. Thank you for always reducing Nate's meds down to 1 ml doses, and for the nice, tasty flavour.

Will update more as we find out more. We have felt God's hand so near to us in all these times. We have to do hard things, but like Nates Sunday School lesson said a while back, "God Helps Us Do Hard Things". May you feel blessed today. Enjoy your Sunday and time with family and friends today!

Day 5 - End of day

Today was a day that had a bunch of really good moments.  Moments that were answers to prayers and some fun moments that weren't even expected.

As you saw from an earlier post, breakfast was eaten by the boy at The Stollery, in unit 4C2, Room: Chomper, Bed 2.

If that doesn't deserve a hallelujah, I'm not sure what does!!  I was so thankful in those moments where one scoop of Corn Flakes turned into two, and then three.....all the way till six!!!  And if that wasn't enough, a few minutes later,  feeling like I was on a roll (okay, I knew I had nothing to do with it!)  I asked if he wanted one of the Timbits we had been taunting him with all day yesterday.  Well, I don't know if taunting is the right word.  But what would you call it, if you took you child for walks around the hospital several times, and in the stroller's little snack holder in front of them, you place Fuzzy Peaches, Timbits, Pringles and Gummy Bears?!?   Sure, we got a few looks from people as we walked by, most were probably aghast that these parents would feed their sick child all this junk in a hospital. Anyway, you get the idea! So after a day of no interest in any of that I offered him a Timbit, and guess what!  He ate half of one!

Well, I guess those morsels were enough to fill him right up, as he didn't eat lunch.  But later in the afternoon, when he saw some Hickory Sticks (his dad's favorite) in a vending machine, we got some and he snacked on a few.

Okay, that's a lot of details about food. But I'm just so glad that there is some desire to eat, under his own parameters.  For now that's fine.

Other activities of the day were a bit of a surprise to us.  The Alberta chapter of the Children's Wish Foundation had an event for the kids at The Stollery.  Here are a couple of pictures from that event.  Even though this accounted for less than 15 minutes of our day, we took a lot of pictures, because it was likely the most unexpected and appreciated display of love for the kids who have to do hard things.
 

It started with a lightsaber.  Well at least for the boys.  And if you know my Nate, you'll know that if you offer him a lightsaber, you have a friend for life!  From there, the kids had a choice of two Build-a Bear dogs, and their choice of an outfit for their dog.  When Nate saw the army outfit he knew what to pick.  The name he picked is General Grievous, lol!

From there, we met Spider Man (Tinkerbell and Cinderalla were available too). We went on to decorate a 'wish box' and that's when Nate decided he was about done.  We did frost one cupcake before we left.  There were many other activities going on.  They had nail art for the girls, a dress up photo booth, facepainting and massages for the parents.  I was just so impressed by the love they showed for the kids, and how special they made our little heros feel.  What a fantastic organization honoring the little fighters we love so much!

Okay - minor interruption.  I just spent about an hour with the rest of this update...there was some really good stuff in there!!  But in transferring from my ipad to macbook.....POOF!  It's all gone.  Sad?  Yes!

But knowing I'll be getting up in 4 hours, I really can't finish it now.  So here is the summary:

Medically:

Introducing back ibuprofen and a PRN for morphine for 24hrs.  Want to give Nate the best chance to have no pain to give him the ability to heal, get mobile, and effectively cough and clear his lungs.  His O2 sats were still dropping during the night yesterday into the 80's, so got him back on oxygen for the night.  Expecting it to be better tonight.

INR (blood clotting) levels are not increasing yet.  I gave him my first finger poke to check levels, and later this evening gave him my first injection of a blood thinner drug that is done twice per day, until his levels regulate and we can continue on the oral medication only.  He still cried and pleaded just the same, but after calming down, grabbed my finger and held on as we sat together for a quiet snuggle.

He still loves me.

He will have his regular blood work done tomorrow.  Please pray!

Meds:  Had a tough day of his continued resistance and spitting out the medicine.  Found a trick online, that worked better at the 9pm doses.  A freezie to get the mouth super cold, and then placing a finger between his cheek and teeth, and dispensing the medicine in the area at the back.

Activity:  He is walking a little farther, with someone helping to stabilize him.  He tires out quickly, but today was an improvement from yesterday.

We had a wonderful surprise visitor today.  We met a beautiful 'heart family' when we were in Edmonton in January for the MRI, and was so glad to be able to reconnect today!  We missed you M!

Nate is beginning to emerge from the post-surgery darkness, and as he does, I can see that his little mind is confused at times with what happened, and why things are continuing to happen to him.  And the life long changes that will now be a part of his world are something that I pray he will accept as he grows up with it.  I wish we were leaving the hospital with a "fixed it and forget about it" scenario, but we're not.  It makes me think that the transition to back home will have it's challenges, as it's not just going back home as it was before.  It's a new lifestyle and changes in routine and some kinda uncomfortable things that will need to be adjusted to, and eventually be a part of the everyday.

Okay, I'm still really bummed about my lost words....seriously!  But time to put that aside, and get some sleep!  Thanks for being pumped about Nate's walking video!  I've got one more little audio clip that I want to share.  You'll have to turn your volume way up on your computer for it to work.  Something kinda cool and unique about Nate's new mechanical valve, is that you can actually hear it working!  These is a fainy 'tick tick' sound every times it opens and closes.  I just used the iphone 'memo' recording function to get this, so there are some ambient hospital sounds in the background.  But thought you might enjoy!

Day 5 - Afternoon walk

Day 4

Today was one of those days, that when you look back at the end of the day, you can't even remember everything that happened....or you do, but you're not sure if it was from today or another day!  A day that never really stopped, just one thing after another!

I started the day with optimism and hope, but after a short time, it became apparent that we still had a very stubborn and unagreeable little boy.  During the night, he'd had some high heart rates in the 160's, so they increased his oxygen, thinking it was due to his low hemoglobin.  He still refused any food, but did drink, and thanks to his IV that was running all night, was definitely on the positive side of wet.  During rounds, I heard the cardiologist say that he needs to get mobilized and he needs to eat.  Umm....yes, I'd love that too.  They want to get us out of here by late this weekend, or early next week.  

Another issue that he's having is his refusal of oral medicines.  Most all of his meds have now changed from IV to oral.  So, his latest trick is to spit it out as we're shooting it in his mouth.  Bad behavior is one thing, but bad behavior that interferes with the drugs that his body needs and determines his wellness is quite another.  These meds are coming every couple of hours, the way that they are staggered, and there are usually 2-3 at a time, so it's quite a battle.

Mid morning, before getting his blood transfusion was blood work time.  Now, he's already got the reputation of being super hard to get anything on.  They called up the best people they know, and even they tried and failed.  At this point there are about 5-6 nurses and techs surrounding the bed, plus Don and I, and Nate is really struggling.  Crying a lot, asking 'Mommy, can't you do it?", "Why does everything they do hurt?", etc.  The final approach was to go off of a vein in his foot.  They did get some, but not as much as the wanted.  And in that process of being pinned down, and waiting for the very slow blood to come in, all of Nate's exertion caused one of his chest tubes wounds to spring a leak and bleed through all the dressings (and remember, he's now on blood thinners).

Yikes!  By the time that was all cleaned up, it was time for his blood transfusion.  During that time, we started on our Warfarin/Coumadin and testing education.  Definitely a lot to take in and process.  Especially after being kind of  'done' from the morning.  After being infused, Nate perked up and was ready to get out of the room again.  He took his first steps....very slow and shaky, and only with me totally supporting him, but he walked several feet.  As the day and evening went on, we practiced his walking a few more times.  The longest stretch was about 10 feet, which felt like a real improvement.  He also ate 2 Fuzzy Peaches.  Victory!!!

At supper he had one bite of a hamburger, and at bedtime, half a dish of applesauce.  Very small steps, but grateful to at least have small steps.

After 9pm, the cardiologist on the floor asked Nate to go for another chest x-ray.  Both lungs are slightly collapsed in the lower lobes, which can often happen after surgery, and usually will improve with getting up and mobile.  However, after listening tonight, (and she just loved listening to his heart...loved the sound of his valve!!) she wanted to rule out the possibility of pneumothorax.  So we did the x-ray shortly after, and it showed the issues she'd expected (pleural effusion and the collapsed areas), but not pneumothorax.  Thanking God that we didn't have to add that to our plate.

After today, I thought about how, as Nate's mom, I would do anything to take this constant suffering away from him.  And I would, in a heart beat.  But I also know that if I did that, and had to put up with everything that he has had to this week, well, I'm not sure I'd be the most gracious or mild mannered person either.  Actually, I know I wouldn't.  I'd be a down right sour puss.

Anyway, progress today, sometimes only baby steps, but they are steps.  And then a dose of sweet, happy reality when we FaceTimed with my parents and Brady.  Glad for the two brothers to be able to see each other.

Thank you to each one of you for each prayer, email of encouragement and support!!!  So thankful we're not in this alone.  Tomorrow is another busy day with blood work, getting educated on more blood thinner information, and learning not only how to test Nate's INR levels at home (with a prick to the finger - dear Nate, you just have no idea what's coming yet), but also be taught how to administer the injection form of Coumadin, in case we ever need to switch over to that format instead of the oral meds.  Plus, Discharge will come to pay us a visit, since they don't know when we'll be going home, but in case it's on the weekend, they need to get things lined up tomorrow.

That's all for now!

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!!

My Anthem

As we sit in the airport, waiting for our flight to Edmonton, I want to start with a verse that a friend shared with me this morning.  There have been so many prayers and love sent to us and we are so thankful!!!  But this is a verse that will become my anthem for our journey now.

Isaiah 43:18-19:

FORGET the former things;

do not dwell on the past.

See I am doing a new thing!

Now it springs up,

do you not perceive it?

I am making a way in the desert and

streams in the wasteland.

This is truth.  Our story that continues now, will not be defined by past experiences.  God is doing a new thing in our life and He is faithful and has already been showing us.

1.  There is more consensus with the proposed treatment plan.  The team discussed Nate on Tuesday, and most agree that valve replacement is the best scenario.

2.  Nate is excited to go to Edmonton (for now, lol!!).  When we told the boys about going, the only response and thoughts from Nate were: "Woo hoo!!  I get to go on a jet!".  Brady had some tears, but only because again, he would be missing out on the jet ride.

3.  I prayed that we would feel peace and be confirmed in many ways that this is the right thing to be doing.  On two occasions, people have said that in their prayers, they felt God assuring them that things were going to be OK!

That's a pretty good start!!  I'm not saying this is easy or I'm not anxious (still working on that), but I have the reassurance that God is with us.....He's doing this.

Psalm 29:11

The LORD gives strength to his people;

the LORD blesses his people with peace.

Jeremiah 1:5

Before I formed you in the womb I knew you,

before you were born I set you apart.

Here we go....

And just like that, life shifts into a completely different gear.

As I was making supper, the phone rang.  And to my surprise it was the surgical co-ordinator from the heart clinic.  I was not expecting this phone call, so it hit me pretty hard.

Nate's heart surgery has been scheduled and we leave for Edmonton next week Thursday.

Wow.  We were thinking June....maybe.  This just came out of the blue.  Every single bit of me wants anything BUT surgery for my little Nate.  I remember walking through The Stollery when we were there in January for Nate's MRI, and thinking 'I do not want to come back here.  I will not come back here.  I can not bring Nate back here for surgery'.  Good attitude, hey?

But now we're going through the motions.  Thinking about making arrangements for Brady while we're gone, getting the time off from both our jobs - and thankful for such understanding employers, thinking about what to pack - all of the necessities for keeping our 'strong-willed but still so apprehensive and attached' Nate happy, occupied, and distracted with toys and surprises....which will hopefully bring him some enjoyment and serve as a bit of a consolation for everything he will have to endure.

But the kicker is this:  The boy who has been asking when is birthday will come for about 4 months already, and who in the last week has started a numbered countdown to April 30th, will most likely spend his 5th birthday in the hospital.  That makes me sad.  And that's after the sadness that I feel about what he'll endure in general.

The surgery that they plan is not finalized as yet.  Options are the Double Switch or valve replacement, and biventricular pacemaker.  We plan to discuss the options next Thursday with our cardiologist in Winnipeg, and then on Friday at our PreAdmission Clinic at The Stollery in Edmonton, when we will also meet with our surgeon, Dr. Rebeyka.

I am telling myself that it will not and can not be as bad as the last time.  If you remember back 3 years ago....it was pretty bad.  In some ways, I feel better prepared this time around.  In other ways, because I know a lot more of what is coming up, it makes it harder.

Since this news is rather new to us, emotions are rather raw.  I'm sure that in the coming days we will feel more prepared emotionally and mentally.  We need wisdom in knowing when and how to tell Nate about what is coming up.  And how much information to give him.

Even though emotions get in the way sometimes, I am assured of God's plan, His love and His care over Nate and all of us.   He gives us so many promises through the Bible - words that can soothe and encourage even the most hurting hearts.  And I know there are so many people who are supporting us through their love and prayers.  Those prayers are essential and we can't thank you all enough for them.  We know He can do great things, and we pray for great healing for Nate.  We know God can do the impossible.  Thank you for joining us in prayer.


Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us,  to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen.  Ephesians 3:20-21

The Next Steps...

So, it's time to give you all a run down of what we've been learning and processing.
There aren't any cute pictures or fancy diagrams here, so I hope this makes a bit of sense to you, and your eyes don't start to glaze over.  I'll try not to get too technical or wordy here.

Just to clarify:
PC stands for Pediatric Cardiologist.  Nate's is Dr. Soni, in Winnipeg.

Dr. Rebeyka is a Pediatric Cardiovascular surgeon.  He is Nate's surgeon in Edmonton.

"The Team" is the group of surgeons, cardiologists and other specialists (from Manitoba and west) who make up the Western Canadian Children's Heart Network.  They conference together to discuss their cases and collaborate treatment options.

Here is a little video that talks about the team and what they do.  Dr. Soni and Dr. Rebeyka are both identified in this little video.





What Don and I have learned from Dr. Soni, is that the team has met 2 times since February to discuss Nate.

Both times they have conferenced, there have been very strong BUT differing opinions on the course of treatment for Nate.

If that doesn't demonstrate how unique and complex Nate's heart is, I'm not sure what will.  The issue the team is having, is that there isn't one good or proven way to deal with Nate's heart.  Every option brings with it risks and future complications/implications and uncertainty how he would respond in any case.

The 'Double Switch' is one surgical option.  It is a very technically complex surgery.  It includes an atrial switch and arterial switch, thus bringing the ventricles back to their 'designed for' job, the left ventricle serving the body, and the right ventricle pushing to the lungs.  A pacemaker would be placed at this time. This surgery only has short term studies, as it's been around for about 20 or so years.  Our PC doesn't feel that Nate's ventricle would tolerate the switch, as it hasn't improved since his PA banding surgery.  She also feels Nate would be a very sick little boy after this surgery, and most likely need to be placed on some type of assist device to give his heart a chance to heal and get stronger after this surgery.

Replacing his leaky Tricuspid Valve is another surgical option.  The premise being, reducing the the leakage will reduce the work load of this ventricle, and hopefully give slow down the rate of heart failure because it wouldn't have to work so hard if the leakage is reduced.  It would not solve the problem of the high pressure flow into the lungs and thus, pulmonary hyper tension becomes an issue.  There are tissue valves and mechanical valves.  A tissue valve does not last as long.  It may have to be replaced in a matter of 5 years or less.  A mechanical valve would last, but Nate would live his life on blood thinners (coumadin/warfarin) to prevent clots from forming, and would mean an immediate change in activity and the constant risk of bleeding.  The mechanical valve would need to be replaced only at a time when he is big enough for an adult sized mechanical valve. A pacemaker would be needed as well.

In both these options, there is no guarantee that his heart won't fail following, regardless of which surgery, which brings the option of heart transplant.  Our PC feels this is a reasonable option, and feels our family would be conscientious and be able to handle the responsibility and maintenance that is required for a transplant recipient.

So now you can understand why there are some 'strong and differing opinions' among the team.  In the end, our surgeon told Dr. Soni that he would do whichever surgery Dr. Soni would prefer.

She feels that the valve replacement is the better of the options.  As of right now, Nate is a level 3 surgical priority as of February, and we have about 3-4 months to wait.  Once we have a surgery date, we will go to Edmonton.  Nate will have one more 3D echo.  The team will meet one more time to discuss and 'duke it out' a last time.  We will then meet with Dr. Rebeyka and discuss with Dr. Soni, our options and make a decision.

Our hearts and minds are full these days.  It's a lot to process and consider.  Even harder when I see Nate doing pretty well on a day to day basis.  Especially when I think about him wanting to play T-ball this spring, looking forward to camping this summer and preparing to start Kindergarten in school this fall.

So, we'd ask for you prayers for our family!  We need wisdom and a clear and confident decision.  We've prayed for and will continue to pray for Nate's complete healing.  We have complete faith that God can and will give Nate a beautifully healed heart.

Mind the Gap

Once upon a time, not too long ago, there was a boy with 20 beautiful, perfect and meticulously cared for teeth.....

Then, as the days grew cold, and the snow created an outdoor arena of fun, GT racing became one of the boy's favorite things to do.

So, while their mother was at work, the little boys and their dad went out again, to conquer the hill.







And conquer they did.....even leaving the battle grounds a little (or a lot) bloodier than they found it!

Nate the Great now sports this lovely smile with pride!

And they all lived happily ever after.  With 16 meticulously cared for teeth.

We're at one week post-incident and this guy is doing pretty good and back to mostly normal eating.  Although, biting most food is a bit trickier for him now!

Reminds me of the Seinfeld episode....

But we're thankful that there was nothing worse that happened!  Thankful for the angels protecting him!!

P.S. We'll have a better idea of Nate's surgeon's plan next week Wednesday...will keep you posted!

I can't remember the last time I've used a P.S.  ha ha!

Results Day?

We were notified this last week that Nate has an appointment with his cardiologist at HSC tomorrow.  I'm assuming that this means the team has met and discussed results, following our tests in Edmonton.
We're leaving tomorrow morning as soon is Brady is off to school, and praying that the foot of snow that they are predicting will not affect the roads.  We always give ourselves 2 hours to get to our appointments, and it's usually right around that time.  Hopefully the snow will not slow us down to get there for 10:30.

In other news, nothing has been close to boring in our family....as per usual.

This time, it was an unfortunate accident involving Nate, and the ski of Brady's GT racer, at the bottom of a snow hill.  The result was Nate losing 4 lower teeth (teeth 71, 81, 82 and 83 for my dental friends :).  Thankful that he didn't have any further injuries.....it could have been much, much worse.  Everyone seems to be on the mend.  Although Nate can't bite into things, he has been eating pretty well, (something that was an immediate concern for me).  Brady has also recovered from the fear, guilt and sadness.  He felt incredibly guilty and was scared seeing all of the blood (it was bad).  Don had to calm him down on the drive, even more than Nate.  He kept saying 'he's losing a lot of blood' and even asked if Nate was going to die.  I was conveniently at work, just down the hall from my friends at the dental office, so I rerouted Don from going to the ER, and just told him to come straight to the office.  Nate was very brave through it, although it did get a little loud in the room (sorry to the people in the waiting room :).
At one point, between sniffles, Nate even asked:  "Am....I....sniff, sniff.....going.....hiccup.....to.....sniff......die?" Oh, the poor guy!!

And in totally unrelated news, we're getting our house put back together again.  Glad to have carpet downstairs, and furniture to actually sit on down there and up in the living room.  Will post pics once I take a moment to take some!

Finally something soft to walk on! 

Just need to put the pieces together!

Well, that's it for now.  Thanks for your care and love in the last week and for the prayers as we head into our appointment tomorrow.  Praying with expectation!!

Glad to be home!

We're back at home....sweet home! Wow - if this was just four days, and didn't even involve surgery, how in the world did we get through 4 weeks of this the last time we were there?!? I guess that wold be called God's grace and mercy - getting us through a time that seemed impossible. But anyway, back to 2013!

Procedure day went as well as could be expected. Things did get delayed (surprise!), Nate complained about being hungry, but did okay with all the waiting. We got in shortly after 11 am, started the anesthesia with the IV this time (didn't enjoy that, but it was quick, and we haven't talked about it since!). The MRI and 3D echo took about 2 1/2 hours. Recovery in at the MRI unit took a bit longer than usual. The anesthetist, when beginning the intubation said Nate was just full, full, full of secretions. She said is was pretty bad. After the procedure she did some serious suctioning, and got him cleaned out, but did advise that there was something else going on - possibly with sinuses being infected or a ridiculous build up from his cough that he had. Anyway, after an hour there, we moved up to the ward at about 3pm. The typical recovery from anesthesia played out, but by 7 pm all systems were 'go' and we were ready to leave.

Today was a day of travel back to Winkler, via a crazy cab ride (can you say a nine-point turn to get out of the hotel parking lot???? Don was ready to volunteer to drive himself!!) out to the Edmonton airport, then on to Calgary and back home.



So thankful for safety through travels and procedures.

Thankful for parents, who cared for Brady and gave him safety and stability while we were away.

Thankful for elite medical professionals, in a specialized centre for their knowledge, skill and care.

Thankful for understanding employers who allow us to take time off without an issue.

Thankful for the best friends and family who support us, care for us, show their love in many different ways, and commit to praying for us as a family and ultimately for Nate's healing.

Thankful for other heart families who are taking this journey with us - for their understanding, advice, prayers and love.

Thankful beyond words for our Heavenly Father who gives us strength for each moment, and hope for each new day.


All the waiting....

After the hard part of recovery was done, we got a good smile out of him!

Hot wheels from the treasure chest and a Blue Jays toque from the ward.