Tuesday, April 30, 2013

Happy Birthday Braveheart.


Home, oh sweet home!

More to come, but for now, so thankful. For a safe flight home, a great ride back to Winkler with a dear sister and brother in law. A kitchen full of food and baking- thanks mom and dear sister. And awaiting the early morning rising of dear Brady and anticipating hugs and the exciting reunion of brothers. They're sleeping in their room together, and don't even know it yet.

What a journey, what a road ahead. To God be the glory!

Monday, April 29, 2013

Day 8 - packing up

It's day 8 of Nate's recovery and day 12 of our time here in Edmonton.....and it's time to say goodbye. The thoughts and feelings swirling around are overwhelming, maybe a 2 hr flight will help as I process things:)

Please pray for safety as we travel and especially for Nate. I'm nervous. Just about potential nosebleeds in the air, how he'll be with everything, and the fact that I do need to give him meds in the airport. He was complaining of pain in his chest an hour ago, so he's got some Tylenol in him now. Anyway, more later...
Brady: mommy, daddy and Nate are on our way to hyperspace back home to you!!! We all can't wait to see you!!!

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.

Sunday, April 28, 2013

Day 7 - evening

The cardiologist was in, and in consultation with the child thrombosis team, they've come up with a plan. The hope is that tomorrow morning's INR level will have increased enough to discontinue the enox injections, and continue on with Coumadin only as the anticoagulant. Nate would be VERY pleased to not have those needles twice a day any longer ( although I know there are some pretty cool kids who do these injections and they should get gold medals!!). Anyway, if thrombosis is good with his numbers, his blood work is good and the morning echo shows good function, no fluid, etc.......we could be flying home tomorrow, skipping the whole transfer to Winnipeg and just discharging directly to home. They figured that since there was no way we'd be transferring today, the best idea would be to see this through to the end here. I feel good about this idea. We will still need to be tweaking all of his meds once we get home, but a drive in to Winnipeg sounds a lot better than staying here. And the sooner we get home, the sooner we can get meds that Nate will take without issues.
Not being hooked up for his vitals at home will feel a little unnerving. There is comfort in taking a peek to check his o2 sats, heart rate and rhythms...but I know a pretty amazing Physician who has been in control since the very beginning. So to worry (although normal!) is not what I need to do. Giving up that fear and worry is something that we all need to do!
Nate is calling me over so it's time to snuggle with my little man. And as Brady said today, we hope to 'hyperspace back home' tomorrow !

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!

Saturday, April 27, 2013

Day 6 - making plans

Well, things are a little uncertain right now. After rounds, one of the cardiologists came it to talk. Nate's INR levels are not coming up yet. They feel he could be 4-5 days away from regulating, and achieving sufficient blood protection with the Coumadin. That being said, they really need us out of the hospital. It's full and there are more coming - so they need the space. They are considering transferring us to Children's Hospital in Winnipeg, and stay there until we are ready for discharge. They won't send us without our consent, but are feeling like this would be a good option, as long as there are no other issues that come up, or are seen after reading his echo, etc. At this point, they don't know whether he would require a medical transport, or if we'd be able to fly commercially.

That's where things are at right now. If we were to transport, it would be tomorrow. As of right now, it looks like Children's will have a bed available tomorrow afternoon. Please pray that the right decision will be made and it would be safe for Nate, no matter what the decision.

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:

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!

Friday, April 26, 2013

Day 5 - Afternoon walk

Day 5 - breakfast....yes, it's update worthy!

When the breakfast tray came today, I showed Nate the box of cornflakes. He nodded. I got it ready, and went on to eat at least 6-7 spoonfuls. Now that's enough to make my day!

I'm thanking God for this. Thank you for praying for us, and the eating part. One step at a time. And this is one very good step!!

Next step, 8am medicines!

Thank you Mr. Cornelius Rooster, lol!!

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!

Wednesday, April 24, 2013

Day 3

Nate had his fair share of tasks before 9am today. Surgical rounds were at 6:30am. We got the go ahead to remove the two remaining chest tubes and remove the temporary pacing wires, that were placed during surgery. That wasn't fun, but happy to have them gone. We had to lay low for 4hrs after those procedures. Chest X-ray was done after lunch and bloodwork (through his IV which normally isn't allowed to be done on this ward - but they did for Nate due to the 'issues '. An echo was also done this afternoon.

Nate was a boy with very few words today. He refused to eat, but did drink as much as we could get into him, which wasn't a lot. As a result, he had a period of increased heart rate and respirations while sleeping, even though he had a morphine dose and was relaxed and sleeping. It is still a bit higher than they'd like. There could be several issues going on, but will treat it as dehydration for now. Also, his last blood work showed low hemoglobin, so he will get blood tomorrow, as it was too late to do it on the ward today. The rest of his bloodwork was very good.

We also started his oral bloodthinners today in addition to the injections. This oral med is what will continue when we get home. Thankful it won't be the injections. He'll already be getting frequent pokes by me at home to check his INR level or blood clotting factor. They need this med to be in his system and determine the right dose for several days before we can come home. And really, a person should be on a regular food diet before starting.

So, prayer requests for today is that his appetite will return quickly. Like 'now' quick! He needs food inside today. That new meds and old meds would stabilize to the right balance. For a good night. for a safe transfusion tomorrow. For his strength to continue to return and pain to diminish. For his happy self to return and to verbalize himself. For his heart to recover and be strong. That he would be able to play and enjoy some " being a kid time " here at the play area. Those are just a few on my mind right now.

Nate wasn't too photogenic today, so no pics now. But expecting a new and improved Nate tomorrow!!

Tuesday, April 23, 2013

End of day 2

It was a day of changes on a lot of ways. After lunch we moved up to the cardiac ward. Before that could happen, several lines had to be removed and certain drugs weaned off. We also started the anticoagulant regime that will become the new normal for supporting the mechanical valve in Nate's heart. I'm not sure what the at home drug will be, but here at the hospital, it comes on the form of an injection. Poor, sweet Nate. More ouches.

He had a tough day with so many of the physical things happening to him were a bit painful and hard. From removing dressings and lines, to now having to take many meds orally instead of through his line (and they sure don't make them the way our amazing pharmacy back home does...if they did it sure wouldn't be an issue., but these just taste bad,) and then there was the attempted blood draw (again because his arterial line had to come out). Two techs BOTH tried ( and by tried, I mean dug around) on BOTH arms to get a vein, but could not. That was a lot of owies for Nate and was hard to see. He is struggling with pain from his chest tube, as is to be very expected. I'm praying that it can come out tomorrow. So far he has an aversion to most every food, but at least is drinking. Since the continuous morphine was stopped in ICU, the Tylenol and Advil aren't cutting the pain, as he's had two doses of morphine since coming up here this afternoon.

So, a tough day, but a day that you have to get through to get to the healing that is coming. And we are assured of that. It's just the hardest thing, though, to see your little boy suffer in these ways. And I just long for my Nate to come back to the silly, goofy and spontaneous hugging little boy that I know.

It's crazy though. It's only been two days. All things considered, he is making good progress. And I'm thankful for the many, many answers to prayer already. Here's one that I bet you didn't know about: for our 'previous extended experience' at The Stollery when Nate was 2, I realized how important it was to have a room with a view. Once our miserably long stay in the ICU and ICE units were done and we got to the cardiac ward, our room had a view to the outside. There were construction zones, a train transit system and busy roads to look at. It was amazing what that will do for a young boy who loves those things. So, it was definitely a prayer of mine that we'd have a room that didn't just look into the hospitals atrium, but one would give us all the fun city life and action. Well, we got it. And as soon as Nate can actually get out of bed, I'm sure he'll be enjoying the view, too!!

Day 2

Just got kicked out of the icu because of a procedure they are doing, so I've got a minute. I stayed with Nate last night and he did pretty good. His fever slowly came down and it is normal now. Keeping up with Advil and Tylenol to control it. This morning we have been weaning off other drugs and will get rid of a few lines yet. They would like to move him up to the cardiac ward after lunch. Nate is growing restless, but happier since 5am since he could begin some slow apple juice and had a freezie recently. They want to do an echo before leaving icu also. Chest X-ray this am looked good!

Pictures from this morning are of our day nurse, Andrew; and our night nurse Jeck. Awesome guys to have around! And then a pic of the loooong awaited freezie.

Monday, April 22, 2013

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


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.

Sunday, April 21, 2013

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

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!!

Thursday, April 18, 2013

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.

Thursday, April 11, 2013

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