Wednesday, March 31, 2010

Boys will be boys

The boys are enjoying turning The Healing Garden into their own personal dirt race track. It's 'monkey see - monkey do' with Brady here, which is good for Nate. Brady has a bit of a cough, however, so we're trying to limit their interaction.
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All Together!

It was a super special reunion yesterday! It took a bit of time for Nate to let everything sink in. Talk about stimulation overload....Brady, Grandma and Grandpa! But it was all good! It was fun seeing everything for the first time through Brady's eyes. And he was so endearing to Nate, stroking his head and talking to him in a cute baby voice, asking him different questions. It was all very cute! And I got to snuggle with my Brady!

As far as Nate goes, it feels like it is amost time to go home. I overhead one doctor on rounds this morning saying maybe tomorrow. Then, on the second set of rounds, another doctor said he's not "great" yet. And if I sound like a broken record, sorry, but they're still trying to balance out fluids and meds. After all this time of trying to get him 'drier', apparently yesterday he was too dry and went on IV from 9pm to 6am. His appetite is getting better! He still has meals which he's not too interested in, but the next time he eats pretty well. They'll do another echo and a 3D echo to check his valve to help in determining baseline for future surgery. Bloodwork is also due for tomorrow to see where things are at!

I haven't had too much time for photo ops, rather just enjoying the moments, but here is one from yesterday.

Tuesday, March 30, 2010

A Photo Post

Our visit with Sally

Opening up the treats and cards

A little gem that we found tucked away in's called The Healing Garden

Always have to make sure we have money for Nate to throw in to the 2 water features....although Don has been known to scoop some out from the bottom when we run out!

The entrance to the Cardiology ward on the 4th floor.

The view from where I was standing on the pedway in the above picture; one of the cafeterias.

Lots of features suspended from the ceilings...we always have to walk past this one too.

The play area for patients, called The Beach. Makes a kid feel a bit more normal!

Helping Nate fall asleep for an afternoon nap.

Always have to laugh when the meds are delivered in a french fry container!
A little glimpse into what we see everyday, and has become our everyday home...for now!

Monday, March 29, 2010


We were so surprised when we heard that Sally, from our church back home, was flying in to see us for the day! She had a super early morning to get here just after eight. It was so great to just visit and for her to get a little sense of what life is like here. The time spent in prayer was very special to us! She also brought with her a HUGE stack of some very special cards, handmade by the Sunday School kids, which Nate loved looking at! All the stickers and pictures and notes written by the kids warmed our hearts and gave Nate lots to look at! Thank you, Sally, and WMBC, for thinking of us letting us know how much you care!

Our second visitor was a stranger to us when we met him, but left as a friend! Through a mutual contact back in Winkler (thanks Olferts!), Chris, a pastor of a local church, came to the hospital to meet us. It was great getting to know him and about his very musical family! It's so great to feel connected in this community of faith and just knowing people who will be there for you if you need them! I'm looking forward to listening to his family's 'just released' CD!

And....the third visitor isn't actually here yet, but they're on their way!! My mom and dad are coming out again and guess who is with them! It's my Brady!!! Can't wait to see them tomorrow! Doesn't feel quite real!

As for Nate, his day was pretty good! Still has fluid around his heart, so the echo - which will now be tomorrow - should shed some light on where that's at. It's still going to be a while here, so that's the reason for visitor #3!! Nate's hemoglobin was really low (74!), so this afternoon he got a blood transfusion. That's the best way to get that number up quickly, short of eating a few pounds of spinach! It took about four hours to infuse, but thankfully we were still able to be mobile during most of that time!

Time for me to put my thumbs to rest - blogging is a bit more tedious when you're doing it on a BB! Tonight is my night at the hospital, which is fine by me, because that means tomorrow night I can snuggle with my Brady!!
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Sunday, March 28, 2010

Sunday Morning Check In

Just a quick note today. I spent the night at the hospital last night and came here to the hotel to have a nap at 8am this morning, so I'm heading back to Nate now.

Not much new happened yesterday. They are noticing Nate getting a bit puffy again, a result of not peeing enough, probably because of the change from the IV to oral Lasix. They gave an extra dose during the night and are going to reassess this morning. Praying that he'll start peeing on his own, without the need of extra Lasix.

Saturday is not a usual rounding kind of day, but I did run into both the cardiologist and Dr. Rebeyka in the halls throughout the day. They both speak cautiously of where Nate is at both hemodynamically and otherwise.

I compare it to a road trip with kids. They always want to know, "are we there yet?", and as parents we try to be honest and put it in perspective. I'm personally trying not to be one of those kids asking the Dr's everyday, "are we there yet?", first, because they don't know either, and secondly, I think they may find that kind of annoying!

Another note - remember when Nate's surgery was cancelled the second time, on that Friday, for a child who needed a Berlin (artificial) heart? Well, Nate is now roomies with that cute little one year old. It was neat telling the mom how there was a small army of my friends and family praying for Dr. Rebeyka that morning, not knowing that it wasn't Nate in surgery at that time!

Praying you all have a great day today!

Friday, March 26, 2010

No real answers...yet!

Today was a pretty good day. Nate had half a serving of cornflakes this morning! Boy, was I pumped. But...then we gave him one of his meds and he threw it up. At least he did want to eat in the beginning!

He did great for his echo, ie. no sedation required. When the dr. came by on rounds he still hadn't seen the echo results. He said he'd stop by after he got them. He is being very careful in changing meds and trying to get on a regime that will work for when we go home. I've noticed that words that I keep hearing from him when he's talking about Nate are 'complex' and 'delicate'. That's pretty evident, as even very small changes in meds seem to snowball very quickly and become evident in other aspects of his health.

As far as time frame, we never get a straight answer, and rightly so, since everything really is day by day here. One clue he did give me is that the med he wants Nate to be on to reduce the inflammation around his heart, he'd want to give for 10 days, and we're on day 3. But then late in the afternoon the discharge nurse came to our room to go over discharge instructions just in case anything happened during the weekend or early next week, since she doesn't work on the weekends. Then she said we also shouldn't get our hopes up. But, boy, do I ever love the word discharge!! Sometimes what they do is discharge you from hospital, but ask you to stay in Edmonton for a few days so they can check up on things, other times they send you right home.

We never made contact with the dr. later in the day to go over how the echo went, so I'm not too sure where we're at! So we'll just keep doing what we're doing. Nate's been doing so much better - he has his moments as well, and is pretty selective and determined in what he does/does not eat. He had a quarter of a sandwich at lunch, but nothing really at supper. Today, he finally started enjoying a chocolate Ensure beverage, which the dietitian was hoping he'd take, so we know he's getting a few more nutrients. Towards the end of the evening, his cough started sounding wetter, with a bit more grunting; most likely from switching his Lasix from IV to oral. They are also concerned that he is only peeing from Lasix and not really on his own. Sorry it it's too much info., but it's actually kind of important!!

Today is my night to sleep at the hotel and I'm mostly looking forward to it! Nights in the hospital with Nate are pretty much what you'd expect them to be! Don is such a great dad and is taking the night shift today!

Here's a picture of one of the happiest I've seen Nate in the last few weeks.

Thursday, March 25, 2010

Psalm 143

(Our new room in ICE, from yesterday till this afternoon,
we're now in a room with one other patient, but still have a window!)

Just as important as sharing with you the prayer requests, how much more fun it is to tell you answers to prayers!

Today was really such a good day. Nate's sleep was pretty good, but he woke up a happy boy. He had 4 spoonfuls of Rice Krispies. He was happy all morning (other than the obvious, when pressures were being taken or medicine given, of course). We had a good morning looking out our WINDOW! Yes, it's amazing what a window by your bed can do. Especially when the street is super busy! We also went for a little stroll down the halls.

Initially at lunch he completely turned his head, numerous times, at the grilled chicken burger and other things I offered. Then about 5 minutes later I offered just the chicken in pieces----and he ate 5!!! That was enough to thrill me! Everything else he shook his head at, but I was just so glad to the those morsels of protein in!

I have such a different feel today. Today I feel like we can do this...we will get through this....and things will get better! I guess that's what happens when you have an army of people praying for you!

They're changing up his meds just slightly, and the plan for tomorrow is to do an echo. I am praying that there will be obvious improvement and that we will get a better indication of how things are going and how much longer we'll be staying!!

Here's my prayer:

"Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I lift up my soul."

Psalm 143:8

And to the Banmans...thank you so much for the absolutely beautiful flowers! What a suprise! For me, they are a reminder of new life, beauty and the promise of spring - and they bring an even bigger smile to my face!

Wishing Michele and Katelyn and the whole group from church leaving for their mission trip to Mexico a safe journey and an experience that will change not only the people you touch, but yourselves as well! I'll be checking your blog!

Much Better Day

Today we saw a lot more of "our" Nate. Happier, playing toys, starting to eat and judging by the photo evidence, avoiding contact with the Oilers at all costs. Now that's a Flyer (or Flames) fan, but seriously, it's a nice gesture for the players to swing by the hospital from time to time and meet with kids going through all these surgeries and tests. For those that don't know that's Ales Hemsky. Also in attendance today were Mike Comrie and Fernando Pisani.
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Wednesday, March 24, 2010

Where we're at right now!

The bad news is the last 24 hours were discouraging and draining. The good news is that I'm on the other side of that now!! It's a good thing that I didn't write a post during that time, because it would have sounded like a bit of a downer!

Yes, the transition to the new floor and ward was very difficult for Nate and he still continues to have some pretty bad moments, behaviorally. Medically speaking, getting onto the cardiac ward, where hearts are their business, I've learned a bit more about Nate's situation. The part I found the hardest is that they aren't even close to thinking about sending us home. They're not talking about 'days' here. That's really hard and was the biggest cause for my emotional collapse again. The one thing I have figured out is that even though I am missing Brady with everything I've got, I realize that he is really OK, and having such a super time with his cousins, so the challenge is for me to accept and have peace with that, and try not to let that aspect of my emotions drain me further.

Nate's ventricle function on both sides isn't where they want it. The band isn't tight, (purposely so) and as a result the ventricle has not changed as they wanted it to yet. They are waiting for the septum, or wall, of the heart to be pushed over by the changing and larger ventricle. His heart appears slightly enlarged and at this point there is still some fluid around the heart. They continue to work on his drug cocktail to get it to a level that will help him without lowering his blood pressure, and keeping in mind the effect some drugs have on other organs. His lungs are looking a bit better. One still is partially collapsed, with only minor deterioration from yesterday's xray.

The cardiologist who is on for right now was very concerned with the behavioral issues Nate was having. They are completely out of character - getting extremely mad and agitated, inconsolable and not really knowing what it is he wanted that he thought there may be some other issues going on - ie. possible TIA's or that the fluid around his heart is giving him pain. It's so hard for us to know. He start him on a med to try to reduce it.

Nate is still not eating. Today he had 3 bites of bread with jam for breakfast, then half an arrow root cookie in the afternoon. That's all. He's drinking lots of milk, but turning his head to every food we offer. That's hard to see. He did have some happier moments, too! Because of his 'episodes' the cardiologist is allowing us to go to the play room to try and get some happiness and normalness into Nate's routine. I'm so thankful for that. It was a bit frustrating, however, for Nate as he is wanting to stand and walk on his own, but when we tried, he is still very wobbly on his feet. He did walk a short distance with me holding his hand, but tired from that quickly.

Today Don is on night duty. I'm in the middle of doing laundry now and I'll sleep here at the hotel till early morning and then go join him. I was at the hospital last night so we're trying to help each other out!

Please pray that Nate's heart would totally surprise the doctors at the next echo, or even at the next exam, and that God would show us how He is in control and can heal hearts!

Mommy and Nate

If you're interested in hearing my recollection of yesterday's events, you'll need to stay tuned till I get some time by a computer.
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Tuesday, March 23, 2010

Moving Day

So I moved today. Yep, 3rd floor to 4th floor. By that I mean out of the ICU and into the Cardiac Ward ICE Room (Intermediate Care Enviroment). Now before ya'll get too excited let me tell you I didn't take to kindly to the whole shake up. It happened shortly after dinner and I had recently awoken from a much needed rest. Now all of a sudden we're leaving the only room I've known for the past week for my new crib. Not my finest moment. Mom and Dad tried so hard to calm me down but I've become a little more strong-willed these past weeks. I had one of my meltdowns and finally crashed. Then continued the episode when I woke up. Not very popular in my new neighborhood I think. To top it off I haven't had much of an appetite either so when mom gave me some meds to help me settle for the night, I gave it all back to her (if you catch my drift) and more. They tried again 30 minutes later and same result except this time I was so exhausted (see my eyes) after everything I've been through it was the end of my day. Here's hoping tomorrow's a better day!!

Sorry Mom and Dad for all the pun intended!



(Transcribed by daddy while mommy was cleaning herself up)
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Monday, March 22, 2010

A Short Version of the Intended Post!!!

How frustrating....I had a super long post all about today, and with the touch of one wrong key, it's gone. Grrr!! I'm completely disappointed because I don't have the time to redo it, nor do I have the brain power to remember everything I wrote. But maybe there's a reason for this too; in any case here are the basics.

Last night was a really bad sleep for Nate, awake from 1:30 to 4:30am, awake for the day at 6am, with no naps today.

Chest x-ray (lungs still wet), two echos - one on the dopamine and one off, appeared to have the same function - although very difficult for Nate, requiring 3 separate doses of sedatives. Hopefully moving to the cardiac ward tomorrow, although we will start in an intermediate care area. Still need to work on fluid on lungs and balancing meds.

Today Nate looked like a sick boy....till now he's looked like a totally healthy boy (which he is) who just happened to have heart surgery. I could see it in his eyes today, looks like he's been through a few too many storms. Praying that his sleep tonight will provide the rest that his body needs to recover and that his appetite would improve tomorrow. We had to give him chloral hydrate to fall asleep tonight. It was hard to do that but after being awake for 15 hours and only sleeping 5 hours last night, he was overtired and would not allow himself to give in to sleep.

God is giving us the strength we need for each day. Sometimes it feels like there is no way you can make through a hard moment, let alone all the other 'moments' that are yet to come in the day. But just like God doesn't give you more than you can handle, He also gives just what you need to make it through each day.

We've been here 2 weeks now - longing for home and Brady. Although when Don called him today, he made my sister, Bonnie, bring him the phone so he could keep playing while he talked to his dad. Yes, he's doing just fine.

Well, that was abbreviated, and I'm still kind of annoyed. And here's a quick disclaimer. Don was reading the blog, catching up on a few posts and pointed out several spelling and grammar issues. Now, I am anal about spelling, but here's the deal, I haven't been taking any time to proof these posts and I'll admit my brain is usually in a couple of places at once!! So as humiliating as it is, that's just the way it is right now!!
This is a real smile....I've been waiting! Praying for many more in the coming days!

Your prayers, emails and comments here have been an amazing life line for us. I'll never be able to thank you enough!!

Here are a couple of pics that I couldn't post earlier since the orientation was wrong.

These were taken on two of the surgery dates, that were eventually cancelled. Don't you love the hospital jammies?

Hard to believe Nate hasn't walked in a week. Can't wait to be back home!

Back & Forth

Today was a bit of a back and forth day. The team thought because all of Nate's stats were really good they would discontinue the dopamine and captopril now so they could do the echo right away tomorrow.

A little ways into the day we started running into two other issues, that being increased heart rate and respiratory issues becoming evident. It's such a fine balance with the medications he is on right now and how they affect each's so complex - I don't really know how much detail to go into. Simply put, changing one of the diuretics from IV to oral has increased how wet his lungs are. But going back on the IV was decreasing his potassium. Increasing potassium on IV would also increase his fluids. Today's chest x-ray was poorer than yesterday. This respiratory issue is not connected to his heart function directly but obviously they do impact each other.

So....back on dopamine and captopril. Waiting for heart rate to decrease, taking potassium orally (really yucky, the nurses and doctor tasted it and made me too, just to know why Nate would react to it). Two days ago his heart rate settled into a nice range between 100-115. After stopping the meds today it was staying in the 135-145's. Unsure right now if we need to kind of 'start over' with the dopamine to have it running continuously for a number of days. We'll get more details tomorrow. For now the priority is getting Nate balanced.

His day was a lot better today - in large part thanks to an enema!! It had been a week if you need to know! He has become a pretty picky eater so at this point we're just trying to get calories in! He had more positive interaction with us today which was so nice. Our nurse even commented that this must be more like the Nate we know. And speaking of the nurses - I have been so amazed with the very smart(!) and caring people who each day put so much into caring for these little ones!!

Today was also a day which exposed me firsthand to some of the very sad realities of life in ICU. It certainly put things into perspective. Everyone in the ICU has a story and when paths cross it is amazing how we can open up to each other. I know God places us in situations for a reason and can use us where ever we are, even if we don't know how the story ends.

Sunday, March 21, 2010

Happy news this morning!

During this last night, Nate's arterial line in his arm kept kinking. Everytime he would kink, it would provide an inaccurate pressure reading. Even though his arms have a board taped to them, the small amount of flex that he had was enough to throw it off. So, during the night, his nurse took that line out. If they need to take blood, they'll try it through the picc line, and now to get his pressure reading, they're using the cuff. Nate really doesn't like that either, and it usually wakes him up if he's sleeping, but they're cutting back on how often they read it now as well. What that all translates to is Nate has one FREE ARM!!! And it's been happily finding it's way up my sleeve.

The other good news is the vein in the peripheral line that was running out of one leg was no longer open this morning when they tried to flush it. (That wouldn't be good if they still needed it!) They have not been using that line recently, came out too! Now with that whole contraption off his ankle, we can finally boot on his booties, and one: cover up that oxygen saturation sensor's red light that is taped to his big toe that he really gets mad at, and secondly: we can keep his toesies nice and warm!

We had to say goodbye to Grandma and Grandpa this morning, they left for home. It's been so wonderful having them here with us! Having a familiar face waiting for us when we walk out of the ICU and having someone to grab a quick bite with, not to mention the morning muffin, and all the other special things they did for us. Wishing them safe travels and they return home!

Saturday, March 20, 2010

My Hope

So, here is what's on my heart. If you want to pray for one thing for us, this is it: that the function of Nate's ventricle would be exactly what the doctors want on Monday. If it is, it most likely means getting off the dopamine and moving up to the cardiac ward. If it is not, it means more time in ICU, and I don't think I can take that.

The past two days have held some extremely trying times. There are times when the boy I'm looking at just doesn't match the boy we know Nate to be. It's so difficult to see him so frustrated and physically tormented by the circumstances he's in. He has lines coming off of both arms, one foot and three leads off of hischest. He can't bend his arms and he's bound to his bed or sitting on my lap on an office stool, inches from his bed. I know he just longs to see beyond the curtains around his bed.

But there have been moments when we see just a glimpse of our Nate. His giggle this morning as we played with a container of cheerios was just such a refreshing surprise that I ran to get Don from the waiting area just so he could enjoy it, too. Nate really laughed, and I could see happiness in his eyes.

These little glimpses reassure us that our sweet little Nate will soon come back to us! So, please pray that Don and I would have the physical and emotional strength for Sunday, and that Monday would bring with it great news and a new home on the 4th floor!

Two little things...

So, there were two breakthrough for me yesterday. Try not to laugh!

First one: I'm now wearing sneakers. I finally gave in to foorwear that was intended for being on your feet 18 hours a day! Sneakers and pants, sneakers and jeans...Feeling a little dorky, but my feet area a bit happier!

Second one: I spent last night at the hotel! Sometimes it's funny how God works. I know He makes all things work together for good, and this situation had a funny way of working out. For the previous two days and nights there was a particular person hanging out in the PICU family waiting room (where I've usually slept). Never went in to the ICU to see anyone, often was sleeping there during the day, and hanging out in the late evening too,and his story just didn't add up. Last night, I was just way too apprehensive (ie. scared!) to sleep there and there really weren't any other options so just before 11, I went back to the hotel and slept till about 5! The nurses were very proud of me....they knew how attached I was and how hard I found it. Graet news is Nate slept well and the nurse was able to soothe him when he did wake up. Don, already sleeping for a few hours, was surprised when I joined him at the hotel. In his old age, needs a bit more sleep than his younger, spry wife!!!

So those are my two tidbits of accomplishments for the day. Nate's day has had it's ups and downs. For a short time this morning, I saw some of Nate's personality come back. We were playing with his cars and he interacted more that he ever has with me. That lasted for a wonderful half an hour and then we saw the hospital side of Nate, complete with tantrum, arching his back, pulling at lines, and just wanting OUT of that bed and that room! We can't take him anywhere, not even out of his room as long as he's on the dopamine.

Right now they'll continue the dopamine until Monday, do an echo after that to see how his heart functions when he's off of it!

Friday, March 19, 2010

A Letter from Brady

I just could not resist sharing this from you. Brady is having the time of his life with my sister's family. Here is a letter that Bonnie transcribed verbatim of what Avery, Brady's 4 year old cousin and Brady wanted to tell us!

Brady: Dear Mom and Dad and NateI hope Nate didn't cry at the hospital when he was having his operation and the doctor cut him open with a big doctor knife. And I hope you are having a really fun time watching your movies.

Avery: I hope you are feeling fine.

Brady: I hope you have a safe ride home. I am going to be happy to see Nate and I hope when he is back that little crack in him is gone. Its ok if I can still see the line. You had a good operation time at the hospital.

Avery: I hope you are feeling well at the hospital.

Brady: And I hope you will feel well at home. We have been playing with Owen, some Lego, and pretending to be armies.

Avery: I am going to have a graduation at Wee College. We will sing a song - "We believe the Bible" and we will have some snacks.

Brady: I hope my dad had a nice birthday party.

Avery: Tonight we will have a jammy movie party.

Brady: we will watch Bob the Builder

Good bye and I love you. From Brady and Avery and Ry

5 in 11

It's just past noon here and boy, it's been quite a morning! What day is it anyway?

In the past 11 days that we have been here, five of them have been days of withholding food and I sound like a broken record yet?!? Today was another one of those days.

Nate didn't have a good sleep yesterday. He was awake and pretty restless until 3:30am. Don and I finally gave in after 2 and had to sleep - Don went to the hotel and I found a spot here at the hospital. I went back to the ICU at 6am, and he was already awake. Asking for num nums. He wanted food so bad. He began getting extremely upset and agitated, just crying out for food. His chest x-ray was at 6:20, and he just didn't settle after that. There was nothing I could do, no comfort he would accept. The doc came in and could see that this situation was pretty difficult for me and said she could give him some chloral hydrate, a sedative, to try and get him through to the appointment for his picc line at 9. We've had that before, and sometimes Nate fights it so much and it takes a while for it to kick in. That was the case - he didn't calm down. Don got to the room at 7am and I decided it would be OK if I left. As it turn out, he did settle about 5 minutes after I left!

I went to the hotel to sleep a for a few hours, knowing Don was with Nate, and Nate would be in radiology for up to 2 hours anyway. The picc is now in, it only took about an hour, but they did put him completely under for this, just to be safe. He woke up hungry and again, I delighted in feeding him lunch!! He's groggy from the meds and hopefully he can sleep some of it off, and not be too upset or in discomfort. He's totally off pain meds right now, and we are just giving them as needed for now.

He'll have another echo tomorrow to see how his ventricle is pumping - if it's function is where it needs to be with the help of the dopamine, they will take him off the dopamine, and repeat the echo the next day to see if the venticle is pumping the way it was when it had the dopamine in him. That's what the next few days will be like!

Good news is they once again took out the catheter, but the good news is he has since peed!!!

If any of you know Nate's habits, you know his comfort zone is found by putting his arm up my sleeve cuff and kind of rubbing and holding my arm. Now he's got both arms 'tied' up with stabalizing boards and it makes it tricky to fit that whole set up into my sleeve!! But it's not stopping our dear Nate, he's already tried working his way just past my wrist a little bit! I'm so glad he can still find that comfort!

I'm going to go see how the little guy is doing now. Our nurse found an Elmo movie, so hopefully that has made him a little happier now!

Thursday, March 18, 2010

Nate the Great - and other pictures!

This was surgery #2 attempt. We mangaged to find a train table for Nate to play at. Gotta love the striped hospital pj's!

Birthday lunch for Don at Earl's, right next to our hotel.
Surgery day, the real deal. We've already done the waiting and now we are up next to the surgical theatre getting ready to bring Nate in.

The Stollery has a very unique protocol of bringing children into the OR. Instead of the hand-off from parent to nurse who brings the child in, a parent is able to gown up and actually goes right into the surgical suite and holds the child in their lap until as the anesthetist administers the IV or gas, depending on the situation, until they are asleep, and then the team takes the child from your arms and places them right on the table. Definitely the hardest thing I've ever done in my life. To make matters worse, Nate was fine in the above picture (I most definitely was not) before I gowned up, but while I was getting dressed, he was in Don's arms and was not watching as I was transformed into a 'green capped hosptial person', for whom he had no desire to be with. It was really hard because in those final moments while walking into the OR with him I couldn't comfort him, he didn't think I was his mommy and that I had left, and just kept calling out for daddy. So hard.

This was at 12:47pm, about being in ICU for about an hour. Don and I and my parents were in a family waiting area right across from the ICU doors, right where they wheel in patients from the OR. When they were bringing Nate in, they stopped just for a moment before going in so we could quickly go look. I remember feeling overwhelmed at how many people it took to bring Nate's bed in, as they were all taking care of different pieces of eqiupment on board.

Hey, Auntie Kathy and Auntie do you like my stats?
I know, we're working on them!

24 hours post-op, extubated the previous day, after about 2 hours in ICU.

48 hours post-op - trying hard to distract him and keep him content.

Grandpa & Nate

Check out my badge of honor!

Lots of bumps along the way, but Elmo is trying his best to keep him happy!

Nate's been a bit more upset today, not sure if some of the soreness is getting to him, or if he is just sick of having lines, bandages, oxygen prongs up his nose and paraphenlia on so many parts of him. He's a trooper and definitely my little hero!

Cuddle Me Elmo

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Let me feed the boy!!

After Nate's daily chest x-ray at 7:20 and his echo, we were told to hold all fluid and food from him. Since they couldn't get radiology to do the picc line today, they said they would do it in his bed in ICU with the use of ultrasound to help guide it in. They said that would happen after rounds.

So we waited and waited, telling Nate once again that the juice would come soon, and trying to get him to have some naps to kill time. He was really quiet and not very responsive, and truly a little grumpy. As was I!! After having a good eating day yesterday, I really wanted to keep going on the meals and nourishment today. I totally understand why he had to fast - having anything in his tummy if he were to throw up while sedated, etc. would be a disaster. Anyway, at 2:15 they finally said they would not be able to do it today in room, but we had a radiology appointment for tomorrow at 8am, so go ahead and feed him. It is absolutely incredible how getting that nourishment in him changed him into a completely different boy!

So, tomorrow they'll get that line in to more safely administer the dopamine. I still haven't heard results of this morning's echo, as to how the ventricle is fairing. His blood pressure has increased as a result of that med, so they will try to balance his other meds to reduce it.

I'll try to get some pictures up soon, I'm missing my mac at home, and trying to get photos to work directly from my camera to blogger....a bit of an issue! Hope you are all doing well. Don and Grandpa are in with Nate right now, my mom is doing some laundry at the hotel, and I'm spending a couple minutes here at the computer, apologizing if some of these posts are disjointed or lacking clarity! Thanks for checking in on Nate and the rest of us!

Wednesday, March 17, 2010

Thankfulness and Speedbumps

Things that make me happy today:

  • catheter in and more diuretics - Nate is peeing now!
  • today Nate has shown us he has an appetite....eating and drinking pretty well today!!
  • prayers, emails, notes of encouragement and presence from family and friends - blessing us in a huge way
  • talking to Brady - he informed me that instead of the 109 days he initially stated, he'd now like to stay at his cousins' house for 120 days
  • seeing pictures of Brady playing and being his fun self

It's been a day day with some very noticeable improvements, mainly his eating! There are still some obstacles that are presenting themselves.

The echo that they did this morning still showed that that ventricle is being sluggish. These first few days after the surgery are important as the heart learns how it is now supposed to perform given the new band that he placed. Right now that ventricle is not doing a good enough job of pumping hard enough. They want to give him a drug, dopemine, to give it some extra strength and show it how it needs to pump. Now the issue is the central line is already out, and the IV that he has in his foot will only be sufficient for 24 hours, and they need to check it every 15 minutes because if there is a perf in the vein and not caught early, can burn the tissue. They need to put a central line or more preferable a picc line. Only problem is radiology is booked till Friday, and even Friday we're still only on the 'call list'. They need to anesthetize him and possibly intubate him as well. So that is something we are praying can happen tomorrow.

So, we're still in ICU and will be for a while. He's back on oxygen as well, a small volume, but it's enough to get his sats up to 100%.

To every one of you - thank you! Feeling strengthened and refreshed today!

Tuesday, March 16, 2010

Change in plans

This has been one of the hardest days I can remember for me. In the morning most of Nate's lines were taken out in preparation for the move up to Cardiac. He was drinking a small amount and not eating. They came in to do his echo at around 12:30. Someone must have been praying because he stayed asleep for that, so it was easier to get great images. After the tech was done the cardiologist came to do further checking. She was not happy with the function of his heart.

At this point they don't really know why, it's unlikely that the band has slipped. Maybe just his heart getting used to all the new changes. But regardless, they need us to stay in ICU for another night so they can keep a close eye on things.

Problem was the catheter and central lines had already been removed, so a bit of a problem with the central line and not being able to administer some heart med he may need with out it. After the echo, Nate began to refuse to even drink, juice and ice chips or anything, and definitely not eating. Now with the catheter removed he also wasn't peeing. He still hasn't peed since since this morning. They tried reinserting the catheter 3 times but didn't work, so they are going to try again with a sedative. They think maybe all the morphine is the problem so he's off of that now.

Just now at about 8pm he did have some juice - first time since this morning. He's sleeping a lot and not happy when awake. They are going to do another echo tomorrow morning to check on his heart function.

So that's a quick summary of the facts. It was incredibly discouraging for me and for a combination of reasons one of the hardest days I've ever had. To think that everything that we've gone through for this surgery is now resulting in a heart that wasn't even doing what they wanted it to do. I kinda hit rock bottom. Tired, homesick - just wanting be back home with Brady and Nate doing the regular fun life stuff, and feeling helpless.

The above was written at about 8:30pm, and they called me in because Nate had just woken up so I didn't really finish. Now it's 11:30 and they just gave him a drug to sedate him which allowed them to get the catheter in. Praying that now that he can pee, maybe he will want to drink and eat more soon and not be so lethargic. He'll be asleep for a little bit, so I got one of those amazing blankets out of the blanket warmer and I'm going to settle in the family waiting area and have a little nap. Don went back to the hotel at about 8:30 to sleep - he'll be back early morning.

Maybe more later after a nap!

24 Hours Post-op

Nate just had a really good workout getting several lines/tubes removed. He's good and tired now and just fell asleep so I thought I'd do a quick post.

So, the fact that lines are coming out are a good sign that our stay in ICU is coming to an end. They want to do an echo this afternoon to see how that ventricle is responding, and make sure it is doing it's job. They'll continue to do echos every couple of days to watch it to see how it adjusts to the new pressure.

Everyone here just loves Nate - they all think he's so cute and they love his hair. Very kind of them, since he does not show much love back! He's actually developed a very hilarious scowl with furrowed eyebrows that he gives to pretty much anyone he doesn't know!

We still trying to get going on the eating thing. He's drinking juice, hasn't thrown up since the 3 times in the middle of the night, which left me wearing a hospital gown!

We're planning on moving up to the cardiac ward later today. The chest tube is still in and surgery does not want to remove it just yet, the drainage is down to minimal now.

We're just so thankful we haven't run into any complications at this point....what a huge answer to all of our prayers!

I hope to get some pictures up soon, when I have some extra time. Thanks for checking in!

Mini Update from Carole

It's just after 5am here. I was at Nate's side till about 3am. Don had gone back to the hotel just after 9 to get a few hours of rest. Then he came to take the rest of the night shift and I got a couple of hours of rest in one of the family areas.

Nate has done well. Dr. Rebeyka said they had to tighten the band more than he had planned on, to 60% instead of 50% of the other side. They also took a good look at things as the team feels that the 'double switch' surgery will be a matter of when, and not if.

They extubated Nate about 2 hours after surgery, 1:45pm. That was good! He was basically over riding the breathing machine at that point anyway. His oxygen levels were too low after that, so they put him on a small amount of oxygen through the nose.

Nate was not a happy camper each time he'd wake up. But with a lot of talking and telling him stories I could usually calm him down. His first words when he'd wake up each time would be something to the effect of "all done" and asking for juice. At about 6 he got his first bit of ice chips. As the night wore on we tried giving small amounts of juice and then progressed to milk, but his tummy has been very upset and he's been throwing everything up. But he is so upset when we don't give him his liquids!

They are hoping that today sometime to remove his chest tube. That's the real 'oucher' of the lines that he has in right now. Also hoping that he will move out to the cardiac ward today, so we'll see what happens!

I'm really anxious to get back in to his room to see how he's been the last two hours, so I'll leave the update at this for now. Each of your prayers has touched Nate and we are so grateful for each one of you. Please pray that today does not hold any setbacks for Nate. Thank you so incredibly much. I know there's much more that I want to write, but I'll get to that when things settle down here a bit. Nate needs us round the clock right now!

Monday, March 15, 2010

Quick Update

Here's a quick little update on our day. Nate came out of surgery around 11:15am and we were told by the surgeon that everything went as planned. He's been doing great in ICU. When he's alert then there's obvious agitation and attempting to pull tubes but he responds to us. He's getting great care and even started on the ice chips 20 minutes ago. Thanks everyone for your prayers. Carole will give more detailed info at a later time.
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Hardest walk ever

I just brought Nate into the OR. It was hard. It will be about 3 hours before we hear anything. Thank you for praying.


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Sunday, March 14, 2010

Calling in the reinforcements!

Well, today was the day my mom's flight was scheduled to take her back home, but instead of saying good-bye to her, we welcomed my dad here as well. It's just awesome to have them here together.

Don got an extra special phone call from Brady today, wishing him a Happy Birthday. It came complete with a choir of Brady and his cousins singing the birthday song to Don. I'm missing that boy so incredibly much.

You'd think that in preparing for surgery for the third time, it would somehow get easier...I can tell you it doesn't! Nate has been such a superhero this last week. I'm incredibly proud of him!

You can pray for Nate and our family, Dr. Rebeyka and the whole team at the Stollery tomorrow. We report at 6:40 and have a surgery time of 8:40. Join us in praying for a miracle!

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Saturday, March 13, 2010


Don, Nate and I went out for a great walk late yesterday afternoon. We walked for about an hour in our neighborhood and checked out Whyte Avenue, Edmonton's version of Corydon. We came back feeling refreshed, armed with some Booster Juice for mom and I, and some cake. I felt like we needed to celebrate something, and what better way to do that than with cake!! Not sure exactly what we're celebrating...maybe that we made it through the week, or that the next day wouldn't be spent at the hospital!!

Today has been a totally low-key day, just hanging out here in our room. We went for one short walk, but it was a bit windy. Don and Nate had a nice nap this afternoon, did some laundry and now Hockey Night in Canada is on! On a side note, when we met Dr. Rebeyka the first time and told him we were from Winkler, he immediately made the connection with Dustin Penner's hometown. Yes, we're in oil country!!


Time to look ahead to the week to come with renewed energy, hope and courage!

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Friday, March 12, 2010

Loss for words...

Surgery did not happen today. We found out at 2:30. We're feeling pretty much exhausted - mentally and emotionally.

As soon as they told us, they got Nate a sandwich, milk and juice which he devoured. He perked right up after that. That's one of the hardest things. This is the third day this week we've had to wake him by 6:30am and not give him anything till mid afternoon. It's breaking my heart.

New surgery time is Monday morning. This is hard. I can't write much else right now. We've done enough tough stuff, it seems, and I'm ready to come home! Thanks for your prayers, they are sustaining us right now.

Change of plans

Dr. Rebeyka just came in to talk to us. There is a baby who needs an artificial (Berlin) heart. He is going to be a couple hours for sure, and we may not go at all. But he did say he won't do any other surgeries after this until Nate is done.

On the plus side, we were able to give him apple juice, but now the fast starts again, in the hopes of an afternoon surgery.

Puts perspective on things. There is a little baby who needs Dr. Rebeyka even more than us right now!
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Surgery day - 7:15am

Nate is doing well! We're all here at the clinic just waiting for our time! It's a big day - thanks for keeping us in your prayers!
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Thursday, March 11, 2010

A few pictures!

Here's a glimpse into our suite. What you can't see is a kitchen and dining area and the bedroom

The evening we arrived

Full day at the Stollery for PreAdmission Clinic. Happy boy when it's just mom!

Just waking up from the sedation.

What I thought would be his last bath before surgery....ends up there will be 3 more baths!

A picture for Brady....isn't that a cool rescue helicopter, Brady?

Brady, look for the helicopter on this picture. This is also the view from our hotel room. What you're looking at are all the different buildings that make up the hospital. The Stollery is actually on the back side. You can see the glass dome where the atrium is on the right side.

What we thought was surgery day. Just waiting for the OR to be ready.

Glad to have Grandma here!