Nick's Heart Story

Future Doctor

2010-07-15T10:41:00.004-07:00

We took Little Man down to SLC yesterday to be seen by his regular and most favorite doctor, Dr. Cowley. They needed to see him in clinic to do an echo, ekg, and ICD check, and to get a new baseline idea of where he is sitting on things. Things went well and everyone down there is just so amazed and happy that the tumor is OUT!!

It was a long day for driving there and back, but overall was good. He was very excited and happy to see Dr. Cowley, and brought him a slew of gifts... from a giant "Smartie" candy, to a Valentine, 2 pieces of artwork, & a couple of snapshots of the 2 of them together.

On the way to the hospital we were telling him about the "Blue Angels" (pilots who perform air shows and are doing one in Idaho Falls soon). We told him that we were going to try to take him to see them and he bursts out saying something along the lines of "Can we just go to the hospital instead? I don't want to see the airplanes... I want to see Dr. Cowley. Can we just go to the hospital?" LOL We had to explain that the airshow would be a different day and that YES we were still taking him to see Dr. Cowley. Funny kid.

We had a couple of minutes to spare before our appointment and so we wandered into the hospital gift shop. Nick found a pair of kid sized doctor scrubs and pleaded with me to please, please, PLEASE let him get them because he is going to be a cardiologist.

I caved.

And so this morning when I awoke and came out into the front room Nick had already dug through our things, fished the scrubs out, and donned them.

Home and trying to heal =)

2010-07-08T12:41:00.007-07:00

So, we've been home now for almost a full 10 days, and My! How the time flies by! Nick is doing well, taking it slow and easy, and maintaining some distance from the outside world. He's been pretty tired still, but thankfully not in too much pain. It has just felt like the right thing to let him have a bit of space to rest and heal and so we've tried to politely ask family and friends to give him a little while longer before they pay him a visit.
His little personality isn't quite back to "normal" yet-- he's very mellow and not as playful or mischievous or giggly as before, but I expect a lot has to do with how much he's been through in the last few weeks. Hopefully when his body is feeling better we'll see more of his old self. We do have moments though that just warm my heart when you see the sparkle back in his eyes or he giggles over some silly thing. He's been so happy to be back with his brothers, and they with him. When we first arrived home and they saw each other again he kind of stood in one spot and giggled a little bit nervously, like you didn't know if it was going to be a laugh or a cry. It was so sweet.

His physical activities right now are pretty much limited to walking and doing a few stairs. He's been pretty content to play some video games (thank you Bonnie, and thank you Ben). It's been a real lifesaver when it comes to busting his boredom. Occasionally we can get him to play something else -- like Mr. Potato Head-- something that doesn't require too much moving around, but believe it or not, he really is making a lot of progress.
We still just have this overwhelming feeling of gratitude for all of this. It's one of those miraculous blessings that make you feel indebted to the Lord forever (if you don't already feel that way). Please know, all of you who have been so kind to us, please know that we are so thankful to you. You have very much helped in lifting our burden and have blessed our lives.

And he's OOOOUUUTTTTTAAAA there!!

2010-06-27T13:55:00.001-07:00

We were officially discharged from the hospital yesterday, and soon will be on our way home. The hives and swelling are gone. He looks really good, and feels pretty good too. The only pain medicine he is on right now is Childrens Tylenol!
We have received so very many blessings here, met some incredible people, and have witnessed a TRUE miracle, but we are OH SO READY to be back with the rest of our little family and in our own home.
Nick has a ways to go with his recovery- a solid 8 weeks at least. So this summer will be a very laid back one. No plans to go anywhere or be too active, but I think we are willing to make that sacrifice for our little hero.
Would it be too "Dorothy" to start clicking my heels and chanting "There's no place like home"? =)

Courage

2010-06-25T08:58:00.005-07:00

Today Nick's hives are looking a lot better, but unfortunately the itching hasn't subsided yet. A dermatologist just stopped by to take a look, and it sounds like we're on the right path. Hopefully this uncomfortable itchy part will be over soon. =)
Last night I was struck again with the thoughts of what a courageous little man Nick is. This child is gracious and even says "thank you" to all the people who come in to poke, prod, and administer yucky medicines. When Josh or I (or the both of us) have to be out of the room for a few minutes, Nick nods and tells us "I'll be fine." When he feels overwhelmed and like crying he tightens his little eyes, takes a deep breath and brings his hand to the bridge of his nose and just pinches. There have only been a couple of instances where he simply could not stop the tears from coming, and I am amazed. Any man, woman, or child that I know would be at their breaking point by now, and he presses forward ever obediently doing the things the doctors and nurses instruct him to do and still trying to be pleasant.
We have joked for years about how mischievous (and often naughty) Nick can be, but when it comes down to it folks, this kid is one sweet, amazing, good, obedient, strong little boy... and we're so blessed, not just for having him, but for the other 2 sweet, strong, obedient, amazing and good little boys we have.
Our cup runneth over.

ITCH

2010-06-23T15:56:00.003-07:00

Well, like I have mentioned, there are good recovery days and not so good ones. Today is not the best. Poor little Nick developed a rash this morning that has spread all over his scalp, face and neck, back, buttocks and belly. It's trying to work its way onto his arms, but it's not too bad there yet. It's a TERRIBLE rash- very hive-ish. Itchy beyond belief. He has been unable to get any rest or relief from it. We've tried benadryl, benadryl cream, ice packs, prescription anti-itch meds, shower, changing sheets to "special" sheets, discontinuing his anitbiotic, discontinuing 2 other meds, and distractions. Nothing has helped. They have finally ordered some steroids and prescription creams to try soon. Hopefully something will help. He is unbelievably uncomfortable.
Even his little face is puffy.
Itch is one of the worst feelings... And there's just so little that anyone can do to help. =( Hoping that this clears up soon!

OUT OF ICU

2010-06-21T15:31:00.005-07:00

We made it! Nick finally cleared ICU's requirements and made it out onto the cardiac PCU. He's SO exhausted, but doing really well. The only lines he still has in are about 3 in the left side of his neck, one in his foot, and one in his hand. Today he's been able to take a few steps at a time, and after 3 walks, has been able to take about 100 tiny steps (with some help). He hates to do it, but it's so beneficial. He's coughing well (which helps his lungs), and trying to eat a few bites. He asks to sleep a lot still. Here are some pics of the last couple of days. Look at the progression! What a Braveheart!

Here (above)Nick is Pre-surgery, just about to go into the operating room. Not a tear.

And here (below) he is and how he looked for the next 3 days. Open chest, heavily sedated.

The 2 pictures above, he finally has a closed chest and is resting, and the same for the one below. Sooo tired!

The last 3 photos are yesterday and today. Wagon rides (which were extremely tiring to him) and beginning to take steps (also tiring and not fun, but look at him smile when I said "Say cheese!"). The last one is Nick resting with some ice on his chest and neck to help relieve the insatiable itching that has developed with his skin trying to heal. He's coming leaps and bounds. It's likely in recovering to have some slower days too, but he's doing super right now, and we're so happy!

2010-06-20T17:02:00.003-07:00

Today Nick has been awake a lot more. =) Talking a lot of nonsense? Yes. Having a hard time to find the right word? Yes. But awake and able to tell us what it is he wants? YES. It's funny how much you can miss that little voice.
He's finally able to have some real food. His appetite isn't much, and most foods don't quite taste normal yet (probably related to the anesthesia he's had-- sometimes leaves a residual icky taste for a while).
He has been saying some pretty sweet little things... the first thing he said upon waking up from one of his naps was "Happy fathers day!.... Mom, can you teach me how to put bandages on, I really want to learn how to put bandages on."
On a little wagon ride he burst out saying "I MISS MY BROTHERS. I want Paul. I want Andrew. I just want to go home and play with my brothers."
Josh asked Nick if he wanted to have a grape at lunchtime and Nick responded real indignantly "DAD. I can't even WALK. How am I gonna play any GAMES."
Nick kept requesting to eat some pineapple, so we got some for him, and after he chewed and swallowed it he said "I didn't mean THAT... I meant the one you eat like this--"(and motioned like you would eat watermelon). So we asked "Watermelon?" and he smiled this HUGE smile of relief and said "YES. Watermelon is delicious."
Just things like that all day. =)

We tried to get him to stand up for a second, but his little legs just couldn't hold him up. It's been a little better this morning. We're actually hoping to get him out of ICU and into the PCU by Monday afternoon. It's looking promising.

Making progress!

2010-06-19T09:23:00.003-07:00

He's waking up a little! Not too much yet, but he's sure trying. They decided to go ahead and extubate him this morning, and then a couple of hours later they even pulled out the 3 chest drainage tubes. (They thought it would be easier on him now, while he is still groggy, than later when he's more coherent.)
Nick is SUPER thirsty, but isn't really allowed to drink yet. We've been letting him suck on a damp washrag or a damp mouth sponge, but he just wants MORE. Soon we can start some ice chips.
Nick is still fighting a fever, and today they think they might know why... he may have a certain bacteria-- so they are testing him, and hopefully we'll have results from the culture soon and if it's what they think it is, they can treat it with a certain antibiotic. For now though, he is on "strict isolation", until this bacteria clears.
Josh and I have missed seeing his little eyes open, and hearing his non-stop talking. Every time he lifts his eyelids just a little -- just enough to see his eyes-- it makes us so happy. He can't vocalize yet, his throat is so dry and scratchy from the respirator and the drugs... but you can tell he wants to by the way he moves his lips.
Hoping for even more progress today, but so happy with all that's already been happening!

2010-06-18T10:46:00.006-07:00

The top picture here is Nick how he looks right now-- he is all closed up. =) Looking good.
Nick has not yet woken up, and actually has about 10 drip lines and the breathing tube still in him. Hopefully, soon he will begin to come out of the sedation and then the nex step will be to get him extubated as long as everything stays good. The bottom picture is the amazing surgeon who managed to get that huge tumor out of Nick's little heart. Dr. Joseph Dearani. Gonna be a bit of a celebrity at our house, I think.

Chest closure

2010-06-17T12:40:00.002-07:00

Today they decided to go ahead and close Nick's chest up, so he's in surgery. They said it will probably take a few hours. He's been doing pretty well. Although he's been sedated for 2 days, he is still responsive when he's asked questions... "Nick, are you in pain?"-- He lifts his eyebrows and ever so slugglish-ly tries to nod yes. "Can you show me where it hurts Nick?" -- And he moves his hand to his chest, or tries to tug at the breathing tube. It's just been amazing and such a testament that people DO hear you when they are sedated, or unconscious. He's just been such a strong and brave little one through all of this. And so obedient! Whenever they tell him to not pull on the tubes or ask him to try to open his mouth so they can suction, he does what he's asked... while he's asleep!
The plan for after chest closure today will likely be to keep him sedated through the night again, and then hopefully begin waking him tomorrow, and then if all is still good, to extubate him (remove the breathing tube).
Thank you all again for your continued prayers and love. The Lord is so miraculous. I know he is holding Nicholas in the hollow of his hand, and guiding these fine surgeons, doctors, and nurses.

2010-06-15T18:18:00.004-07:00

THEY. GOT. IT. OUT!!!!
Just LOOK at this massive ugly thing!! THIS was inside Nicks heart. Do you realize that this is practically as big as Nicks heart?!

Amazing & Miraculous. The Lord has truly blessed us with a miracle. How they accomplished getting this mass out is beyond me. Thank goodness for the Lords guiding hands and blessings, amazing surgeons with incredible knowledge and skill, fasting and prayer, love and support, and faith.

Nick is currently in the ICU and heavily sedated. They had to leave his chest open tonight but will try to close it tomorrow. God bless his little heart. And all of him. We have a way to go, but what a phenomenal first step! Please continue to pray for him... especially that there will be no complications.

We feel so blessed. BEST ANNIVERSARY GIFT EVER! (it's our 10th wedding anniversary today)

In the Waiting Room

2010-06-15T12:15:00.006-07:00

So. We're here at Mayo, waiting in the waiting room for updates on how Nick's surgery is going, and it seems as good a time as any to post some updates and pictures. I'll start with our trip out here. On Saturday, we made the drive to SLC, and made it to the airport on time and as scheduled only to learn that our flight to Chicago (and then into Rochester) had just been cancelled due to bad weather. We began to feel a little panicky, but luckily, after about an hour at the desk, the airline worker was able to get us a flight on a different airline into Minneapolis. We did have to find a hotel and then return to the airport the following morning for a connecting flight to Rochester, but at least we made it in time for our appointments the next morning.

We did take the opportunity to let him do some swimming at the hotel though on both Sunday and Monday nights. (Since he wont have the opportunity to do any more swimming (most likely) for the remainder of the summer.) That made him happy and we were lucky to have the pool pretty much to ourselves. =) On Monday, we had to be to the hospital very first thing in the morning-- 6:00am-- to start the long day of testing and appointments. We were here until just after 5pm. Poor little Nicholas had to fast until about 1pm for the blood work and CT scan that needed to be done. By the last appointment, which was meeting with our surgeon, Nick was EXHAUSTED. We ALL were, but Nick just kind of collapsed on the exam chair and fell asleep.

We went back to the hotel, fed him, and took him swimming. When we got back to our room he needed to have a "special" shower with special soap, and then he just curled up on his bed and fell fast asleep. Later, when we had to wake him for his medicine we coaxed him into eating some more food since he would have to fast again after midnight.

This morning we had to bathe him again in "special" soap and then be here at Mayo by 7. He was such a good sport and so pleasant. Not a bit whiney. We had to wait until about 8:30 before they began to get him ready, and by 9 he was being wheeled to the pre-op. Everyone was so impressed with this sweet little guy and his understanding of things and vocabulary. He didn't cry when they wheeled him away or anything. He was a little nervous about getting "poked" again because yesterday's tests were NOT fun, but they assured him that they would let him smell the root-beer scented anesthesia and go to sleep before they did ANY poking.

He was just the teensiest bit teary when they told him he would wake up with IVs in his arms, abdomen and neck and a special tube in his throat, but he regained his composure and went forth with such courage! Such a brave little guy.

And as for the actual surgery, these are the updates we have: At about 10 they sedated him, and until 12 they did prep work like placing lines and such. By 1 they had him on the heart and lung machine (on bypass), and at 2 they had opened his chest (We think they had to go through his neck area and groin area to get him on bypass). And currently they are working on trying to get the tumor.

That was the latest information we have been given, but each time, the communicating nurse said that things were going well.

I'll add or post again when it's possible. We are so thankful for all of the prayers being offered in Nick's behalf. Thank you so much!

THANK YOU

2010-06-11T20:15:00.002-07:00

Well, last night was the fundraiser for Nick's heart surgery in just a few days. We want to express our deepest Thank You to all of you who helped to make the event turn out so wonderfully. There was such an amazing turn out of friends, family, and community.

There were so very many awesome donations made. In addition to the super-cool kids motorcycle donated by Rexburg Motor Sports, one of the other popular big-ticket items was a last minute donation of a 2 year old HORSE! There was a very comfy swivel-rocker chair and so many beautiful quilts. Photography sessions, services, gift certificates, beautiful hand-made items, plants, food, artwork, a sewing machine, Sonicare toothbrush, and the list goes on!!

The food was wonderful, and the entertainment delightful. Nick even performed a couple of songs with his older brother and Daddy. The crowd welcomed him with loud cheers and applause and made his little chest swell with pride.

Our area police not only came out to support us but gifted the cause with over $1000! AND on top of that helped to serve food and clean up. Now tell me that that isn't going above and beyond. Such an incredible sense of service and love!

There were so many other things that were wonderful about the evening and that touched our family in such profound ways. Too many to go through one by one, but each moment special.

Our hearts are full and our cup runneth over with the love, support, and kindness shown to our little family and especially to our sweet Nicholas. You are all such wonderful and loving people.
We wish there was a way to thank each of you individually for all you have done to bless our lives, and we know that there isn't, but please know that we love you and are full of gratitude to you.

THANK YOU. SO MUCH. We feel so blessed and our load is lighter as we move forward with things. You have buoyed us up and your prayers for Nicholas are felt. May the Lord bless you all for your kindness.

Love,
Darla & Josh

2010-05-18T10:19:00.007-07:00

Well, Nicks heart surgery has been scheduled and "set in stone" (according to the Mayo staff) for June 15th. We will try to head out to MN on the 12th... have the 13th to find our way around, the 14th will be a full day of doctor appointments and pre-op testing (starting at 6:30am and going on until about 4pm), and then early on the 15th will be the operation.

DEEP BREATHS.

We've done this before... we can do this again. It gets a little more nerve wrecking each day, but I think we just need to stay positive. I read somewhere that expecting good results from something that you didn't invest positive energy into is like expecting to be paid for work you didn't do... so...

GOOD THOUGHTS.

I had this neat experience with Nick a couple of weeks ago that I shared already with a lot of my family and some friends, but I think I'll post about it here too:

Josh and I had decided to not tell Nick very much about what was going to happen until we got a lot closer to things. We didn't want to stress him out or cause him to worry. So, all we told him was that soon after he turned six, we would be taking him to the Mayo Clinic to visit with Dr. Cowley's friend Dr. Dearani, to see if he could do some things to help Nicks heart to do "good things". We said nothing about surgery of any kind.

Well a couple of weeks ago, Nick initiated this conversation with me out of the blue one afternoon:

N: Mom, you remember you said you'd show me a picture of Dr. Dearani and let me hear him talk on the computer? (I had found a youtube video of Dr. Dearani and thought it would be a good idea to let Nick see and hear him to help familiarize him)

M: Yeah... I forgot to do that, didn't I?

N: Yeah. It's OK though. Dad showed me 15 days before... after we watched 2 hunting videos , cause I asked him to show me Dr. Dearani.

M: Oh good! So, what did you think? Does he seem like a pretty nice and smart guy?

N: Yeahhhh.... He seems pretty good... Well, I hope they're smart enough there at that one place, that hospital we're gonna go visit. I hope they're smart enough.

M: Me too. I bet they're pretty smart there at the Mayo.

N: Oh Yeah. The MAYO. I was thinking, that at that place, maybe that they could make me go to sleep-- ya know?... so I don't feel stuff?-- and then they could unzip my zipper (points to zipper scar from previous heart surgery), and open up my heart and just... take out my tumor, and so I don't have to have my ICD anymore.

M: (Imagine a stunned expression) Uhhh..... what?? Can you say that again please Nick?

(Nick repeats what he just said)

M: WOW Nick! That is a GREAT idea! We should ask Dr. Dearani if he could try to do that for you! I think you'll probably always have your ICD to help your heart do good things, but maybe they can move it to your shoulder so it's not in your belly anymore...

N: YEAH!! That'd be awesome! I want it in my shoulder instead!

M: So, Nick.... HOW did you come up with this great idea?? Did someone tell you this awesome idea, or did you just think of it?

N: I just thought of it! All my myself! It just came into my head!

M: You are SO smart! I am so impressed! What a great idea you have! (continue praising this idea)

N: Yep. (giddy, bouncy, and very pleased with himself for his great brainstorming) I just thought of it. Cause I don't want a tumor in my heart anymore. I think my heart doesn't know if it should listen to the tumor or the ICD, so we should just take out the tumor!

M: (Stunned at his thought pattern and how profound this all seems) YOU are so smart!

Anyway, it was a special conversation, and I couldn't help but feel that little angels must be helping to prepare him for all this. Which we need to remember... Angels are with this little boy, and helping him... so have faith. Trust.

2010-03-13T17:52:00.002-07:00

Nick had an appointment at PCMC this week and it looks like we're going to start plans for him to undergo another open-heart surgery. This will probably be in May/June-ish, and the plan is to do it at the Mayo Clinic in Rochester Minnesota.

He has been receiving some defibrillations more often and it's requiring more than 1 shock to stop the V-tach he's been experiencing. This is worrisome to the doctors (& us). The staff at the mayo clinic think that they can remove the fibroma from Nick's heart.

We have many unanswered questions, and there are of course, serious risks. There are, however, risks just as serious by not doing anything. There's no way to know the results of taking action or not taking action. There is only hope, faith, and prayer. Ultimately, things are in the Lord's hands. Always.
We have very much trust in the doctors who tend to Nick, and believe whole-heartedly that they are studying out the best options for him.

And for now, we're going to keep taking things one step at a time. =)

SLC again

2009-03-15T14:33:00.002-07:00

Well, we almost made it a whole year without Nick receiving a shock from the ICD. ALMOST.
Yesterday, March 14th, his heart fibrillated again. Enough that he needed to be shocked. He wasn't doing anything that he shouldn't have... just walking around. The last time this happened was March 17th of last year.
It was fairly early in the morning, around 8:00 or so, and all of a sudden his heart must have gone into the fibrillation and he passed out (thankfully) & was "therapied". He hit his eye on the floor somehow so he has a little pink mark there, but otherwise wasn't injured. Josh sent a medtronics reading to PCMC and then called an hour or so later to see if they had gotten it. Because it was Saturday there wasn't someone there who could read it immediately, so they had to call someone in. They called Josh back a couple of hours later and asked some questions, then they instructed that we bring Nick to the hospital on Monday. There was no one there to schedule a time, and they're probably full already, but they said to bring him in and they WILL WORK HIM IN. So... That's the plan. I'll head down to SLC with the boys and we'll see what they find out and if there's something that they want to do.
Who knows? Maybe we'll spend St. Patricks there... We haven't been AT the hospital for that holiday yet.... =)

2008-11-04T19:16:00.005-07:00

We made it back from SLC, and overall I would say the trip was a success. We learned that Nick is using his pacemaker about 15% of the time; that his battery still has a good charge to it; that he is having VT (ventricular tachycardia) several times a day~ but that it's lasting only about 2 seconds or so at a time; and that we'll need to schedule a time to go back for another heart catheterization so that they can administer some adrenaline to his heart while he is sedated and put his heart into fibrillation on purpose to check whether or not the defibrillator is functioning properly, and if it isn't they will be there to rescue him from the fibrillation and correct any problems. The reason that this would be necessary is because as he grows, the leads that are screwed into his heart are being moved around a bit and in order for the ICD to work, the leads need to be in just the right spot. And now we're back, and if all goes well, we wont need to go back for SIX MONTHS!!

Nick was delighted to see Dr. Cowley (of course), and was treated wonderfully while we were there (of course).

I am always so impressed with how out of their way the staff at Primary Children's Hospital goes to light up these little one's days. It truly is a place where Angels walk.

2008-10-30T08:25:00.002-07:00

Well, as usual, we're headed down to Primary Children's to spend another holiday. : )

Nick is scheduled for just a check up this time-just your basic echocardiogram, ekg, x-ray and visit with the doc~ thankfully. And actually, he's pretty excited to see Dr. Cowley-- Halloween or not. In fact, instead of worrying about going trick-or-treating and showing off his Batman costume he's been telling me repeatedly that he wants to take Dr. Cowley a trick-or-treat!

Luckily, Paul and Andrew aren't too bothered about making the trip either, and we plan on doing a little candy-gathering in Utah.

~Nicholas~

2008-07-16T18:38:00.001-07:00

Ask the Mayo?

2008-07-15T20:20:00.004-07:00

After 8 days (and Easter) at PCMC we finally came home. There just was not much that they could do for him there besides try MANY different doses of this new medicine and watch him. His sweet little body did not know what to do with it. Too small of a dose and it did nothing, to high of a dose and it did FAR too much. Days of trial and error and we think we landed on an OK dosage but it must be given every 8 hours.
They approached the idea of a heart transplant (again) but we still don't want to do that, so that's out. They were also thinking about another possible surgery, but they needed to talk with Nick's regular cardiologist, Dr. Cowley, first and get his input and he was un-reachable for about a week. When they did finally consult with Dr. Cowley, he wanted to get another opinion from the Mayo Clinic in Rochester, Minnesota. Long story short, the Mayo felt that doing another open heart surgery would be worthwhile and they suggested trying to remove the entire tumor. Dr. Cowley again consulted with his colleagues and with us and we came to the decision that another surgery would not be out of the question, but that we should do some major information gathering first to see if it was really necessary at this time.
At the end of June we headed back down to Primary Children's Hospital for some tests/information gathering. In one day Nick had an Echocardiogram and EKG, and then a Heart Cath Lab (considered to be major surgery I was told), a CT scan, and an Angiogram. Then 6 hours of recovery and we were discharged.
As it turned out, our Wonderful Dr. Collin Cowley let us know that so far as the tests were showing, Nick is doing amazingly and surprisingly well! Although he has strains on his heart from crazy beating rhythms (bradycardia's and tachycardia's--arrhythmia's) the new medicine that they put him on in March (called Sotalol) is apparently working well. Also, Nick's heart is compensating for whatever reason. (I would say for God's Reasons).
The Lord is SO good to us. And we are so THANKFUL for his mercies upon us and our family!

Another holiday, another shock.

2008-03-18T09:37:00.005-07:00

I guess we'll have an easy way of remembering what day's Nick has shocks from his ICD.. Holidays. He received another shock yesterday (St. Patricks Day). This time he was awake again, and felt it. NOT GOOD.
We called the cardiologist at Primary Childrens Hospital, and it looks like we'll be there for the next few days, starting tomorrow, to try to change heart medicines and see if it makes a difference. The new medicine they want to try is apparently a stronger medicine, but also more dangerous, so they need him to be in the hospital while they put him on it.
He seems ok now, but he for sure is aware of what happened. That stinks. Nobody, especially a tiny little 3 year old should feel 35 joules of electircity slammed into his heart. He continually amazes us. We are so blessed to have him!!!

Leap day

2008-03-01T23:39:00.001-07:00

Leap day now means more than an extra day in February at our house. On Feb. 29, 2008, Nick received his first "therapy" shock from the ICD (outside of the hospital). Nick was standing in the front room watching a kids show on TV with Paul and Andrew, Josh and I were in the other room and all of a sudden we heard a thud and then a second later some crying. Normally this wouldn't alarm me too much because boys are boys and there are noises and cries, but it was a one person cry (which usually means 2 boys are NOT just arguing) and that's what alarmed me. I ran in to investigate and found Nick on the floor crying. I picked him up and probed 6 year old Paul for answers. Apparently Nick was just standing there and suddenly fell. He hit his mouth on the table (or maybe bit his lip?)and was beginning to bleed. I asked him if he had received a shock (from his ICD) and he said no. He told me that his head just wasn't feeling good and he fell. Josh and I suspected that he had passed out and then been defibrillated by the ICD so we took him to his room and manually sent a Medtronics reading to PCMC and called cardiology at the same time. Sure enough, according to the reading, Nick's heart had been beating 400 beats per minute. (that's not a typo) His heart went into ventricular tachycardia and fibrillated and caused him to pass out and receive a shock. (He only didn't feel it because he was unconscious.)Since we're 3 hours from the hospital and he seemed to come out of it OK, they told us to up his meds, keep an eye on him, and send them some more manual readings more frequently.We are so thankful that Nick has this pacemaker/defibrillator in. That situation could have been fatal. So often we feel so bad for him that he has to have it in him because it's awkward and protrudes, is unattractive, and a little painful for him, but on a day like yesterday... you think of it differently.I tried to explain what had happened to him and then later asked him if he could tell me what he thought had happened. This was his sweet little 3 1/2 year old reply:

"My heart was beating really fast. It made my head get really tired like this." (he lay down on the floor with his eyes shut tightly)"My little computer said 'Hey! Wake up!' and my heart said 'Oh! I better get back to work!'"

That pretty much sums it up. So not only was it a calender leap day, but a day that Nick's little ICD had all of our hearts leaping!

The ICD

2008-03-01T23:14:00.001-07:00

In November of 2007 Nick was at PCMC for a scheduled check up. Things seemed fine. We came home. About 10 days later Our cardiologist, Dr. Cowley called us and told us that some of nicks EKG/holter monitoring results looked very... sporadic... spastic... irregular. He told us he wanted Nick back down in SLC in a week for a heart Catherization to see if there was something that they could do to make it more regular.

It was a general anesthesia thing, and they sterilized the room they used just in case they needed to use it as an operating room. (comforting thought?)

The procedure was supposed to take anywhere from 1-4 hours. At 6 hours they told us that when they had given Nick's heart tiny dosages of adrenaline type drug it fibrillated a few separate times for more than a few seconds. They felt that it would be in his best interest to implant in him a cardioverter defibrillator (pacemaker/defibrillator). Since he was already there and under anesthesia, they suggested doing it then. So, 4 more hours later little Nicholas was wheeled out of the "operating room" and up to recovery.

It was kind of amazing. 1 1/2 years prior to this, August 2006, Nick had been scheduled for this exact surgery. He had been prepped for surgery, had all the tests done and was ready for the word "Go!", when Dr. Cowley spoke with me and told me that it was a hard thing for him to tell me, but that he just didn't feel right about having the surgery done. For months the team of cardiologists (and we) had been planning on this surgery. Dr. Cowley asked me if I was OK with that and all I could say was yes. If he felt that it wasn't the right thing then we would go with that. There were countless people praying for these miracle working specialists to have inspiration and to know what to do, so we would most definitely go with his feelings.

I can't say what might have happened if they had done the surgery then, but we are so grateful that these phenomenal doctors listen to not just science but GOD. In Nov. 2007, it seemed to be the best option, so that worked out for us.

We had a little trouble with the ICD the morning after it had been implanted. It needed some fine-tuning. It shocked Nick while he was awake and seemed fine. In all actuality, the machine did what it was supposed to- Nick's heart had fibrillated- but Nick hadn't felt the effects of the fibrillation and ideally he should be passed out before he receives a shock or else it feels like he's just received a hard kick in his chest. Poor little one was scared half to death and afraid to move for a day or two because he thought it would shock him again if he did. They changed the parameters on the device and so far things have been mainly good.

Time Marches On

2008-03-01T22:51:00.002-07:00

It would be difficult to go through in detail the many, many, many hospital visits and stays we have had. Most of them consisted of sedating Nick (until he was about 2 1/2), which for us was a long and awful process.

Nick has teeny tiny veins and after being denied liquid for the hours leading up to sedation, were even harder to use. We only use the IV Team with Nick, and even these amazing specialists usually took about 5 tries to get a good stick. It was a hard thing to watch and restrain him while they did what was necessary. You have to listen to the pleading, scared, angry screams of your baby and try to be calm and soothing while they do their job. You hold your child down and beg in your own mind to Heavenly Father to "PLEASE let them get it this time!"

After the "sticking" would come the temporary relief of the drug that would lull the baby off to sleep. And the doctors and nurses would do their best to work fast and do the many tests that they had to whilst he slept.

Suffice it to just say that there were MRI's, Echo's, X-rays, EKG's, I believe a CATSCAN, blood draws, ultrasounds and so on. Most all of these done on more than a few occasions.

Most of the time we were only in the hospital for 6 or 7 hours at a time. There have been times when we thought things were going along fine and during a visit the doctors would inform us that we needed to stay for a while, there are times when things don't go as planned. We learned to ALWAYS pack an overnight bag and plan on the visit being longer, because even a routine visit can turn into something more.

But, time does march on, or rather, slip through our fingers. You get through things. Every day is not bad. You try to take things one day at a time, and try not to be down-trodden and gloomy. If you are positive about all the blessings you are receiving (even through trials) you will find that most days are wonderful, because you appreciate what you have.

Simply stated: The key to happiness is to be thankful.

Smooth sailing...

2008-03-01T22:42:00.000-07:00

We coasted along for about a month with few problems. Then in November 2004 Nick suddenly began having difficulty keeping any formula down. He would spew whatever he had been fed up and out within minutes. It was the most projectile I have ever seen any person throw up. The poor boy was so hungry and would try to guzzle anything we would give him, but we had to give him such tiny amounts hoping it would stay in him. After several days of this we had to go back to PCMC and try to find an answer.

They poked. They prodded. They ran tests, echo's, ultrasounds. They looked for more tumors. Nothing. After several days there (including our 1st Thanksgiving at the hospital), they finally threw up their hands and said "We don't know." So they put him on some Zantac (acid reflux medicine) for the next month and a light but regular feeding schedule, and somehow it worked. By January he seemed to be "normal" again.

You meant 5 WEEKS, right?

2008-03-01T22:30:00.003-07:00

The doctors put Nick on his 1st heart medicine- Amiodarone. It was necessary after having worked with his heart. It's not a drug you want to be on, and if you are, not for long. But you do what you have to. (About a year and a half later he was changed to Atenolol, and in November 2007 was changed again to Nadolol.)

Anyway, after 5 days we were discharged from the hospital following Nicks heart surgery. Our cardiologist was off duty. There was some attending physician who shoo-ed us on our way, all the while our minds were racing and bewildered. They assured us that 5 days was a perfectly normal amount of time for an infant to be released after open heart surgery. So we left. I remember wanting to scream at someone that I wasn't ready to leave! But hadn't learned yet that you can actually TELL them that. We drove the 3 hours home and tried to be normal. IT didn't last long. Soon after getting home Nick began struggling. We're talking the SAME night we got back. He was screaming uncontrollably and having trouble breathing. We tried our best to soothe him, trying medicine, bottles, holding/walking, priesthood blessings, and after a short while KNEW that he needed medical attention. So we raced him to Eastern Idaho Regional Medical Center (EIRMC). They admitted him and put him in their NICU. They diagnosed the problem as a pain control issue and possible pneumonia (according to x-rays). We stayed a few days there until Nick seemed stable.

Transplant or not?

2008-03-01T22:08:00.000-07:00

We fasted. We prayed. We went to the Temple. Our family and friends also did these things for us. We were fervent in our efforts to get an answer that was right for our family. I think we wanted the answer to be a transplant because at least we would be doing everything that we could to "fix" things. Ultimately, the answer that we both undeniably felt, or rather, knew, was that we should NOT do the transplant. It was a hard answer to receive, but there was no way that either of us could deny that THAT was the right answer for our family.

We never knew how to tell people that we had opted out of that possibility, because we feared that they would not understand our choice. The easiest way to put it into one tiny little nutshell was that we wanted him to have a happy and pleasant life as long as he was given life, versus a hard and tiring life full of Dr. visits, needles, pills, and blood draws for as long as he lived. Quality vs. Quantity.

We knew then, as we know now, that not all transplants are so painstakingly difficult. Transplants are the absolute RIGHT thing for some people. We just knew beyond any shadow of a doubt that we should NOT list OUR son for the procedure at that time. There may come a time that we feel differently. We just need to listen to the answers that we have NOW.

It's a hard thing to make a decision like that. Even knowing that it was the choice we were supposed to make, we still struggled with it.

Open Heart Surgery

2008-02-19T10:55:00.001-07:00

The day for the surgery came. All in all, it's kind of a blur now. The things that I do remember are: Not wanting to let the doctors take him from my arms to do the surgery... but knew that we had to try this. Josh and I were on pins and needles and stayed as close as possible in case there was any news. Once or twice someone would come out and let us know things were ok. But the wait seemed unbearable. Once they had finished, the surgeon came out to discuss things with us. He took us into a private room, sat us down, and tried to explain what he had done. He had managed to clean out some of the tumor in the main arteries, and was also able to get a sample of the tumor to biopsy, but he was not able to get much of the tumor out because the heart tissue and tumor tissue look so similar and he didn't want to cut any of the heart. I remember the surgeon, Dr. Hawkins, seeming so disappointed and apologetic that he couldn't do more. He told us that this was basically inoperable and about our only option would be to wait and see where things went or to list Nick for a heart transplant.

We waited for Nick to come out of anesthesia. We watched him... a tiny 5 month old boy who had just endured a major surgery, lying sprawled out on the hospital bed with wires and tubes all around him. We could not hold him and there were few places we could even touch him. The nurses informed us that it would take hours for him to come around. It made us just ache inside just being there and so helpless. We soon decided that we needed to take a break from the hospital and absorb some of the days happenings. With a promise from Nicks private nurse to call us immediately if he awoke or if there was any problem, we headed down towards Temple Square and the mall a couple of miles away. As much as we tried to clear our minds and relax for a few minutes, nothing seemed to help. I remember walking into a hair salon and telling someone to cut my hair drastically, thinking that surely this would take my mind off of things for at least the length of the haircut. I was wrong... and ended up having about 9 inches less hair.

We headed back to the hospital, conceding that we were not going to be able to avoid all of the thoughts and the pressure we felt upon us. We met with the transplant team to discuss the heart transplant option. At first we leaned strongly toward the idea of a heart transplant. "Anything to save my baby!!", and then, the more we heard-- the less sure we felt. There was so much to consider. So many negatives and some MAJOR positives--IF the transplant worked and his body didn't reject it. One thing was certain, we would have to put a lot of thought and prayer into it.

How it all began..

2008-02-11T10:18:00.001-07:00

On May 14, 2004 Nicholas Stephen was born into our family. We were thrilled to have our second child arrive! He was by far the fastest and easiest birth we have had. He seemed perfectly healthy and fine. The nurses took him to the nursery to check him all out, and the next thing we knew, they had found a problem. He had a very strong heart murmur. They couldn't find the problem there at that hospital and the pediatrician decided it would be best if we hurried him down to Primary Childrens Medical Center in SLC, UT.

At first I was shocked and horrified that ANYTHING was wrong. The next emotion I felt was denial. Surely it was nothing and these doctors were over-reacting. Still, we drove Nicholas to the hospital going I'm sure a good 80-90 mph. We raced in through the ER as we were told to do, and asked for the cardiologist who was supposed to be waiting for us. It seemed like an eternity before we were seen, but after only a few minutes with the cardiologist and his nurse doing an electrocardiogram, the news was given to us that Nick had a massive tumor inside of his heart.

A tumor. A big tumor in our newborn son's tiny heart. We were able to remain calm while they told us that we would be staying at the hospital for a while and then while they made the preparations for us. The instant they left us alone in the room however, I tried to make a call to let the rest of the family know what was going on. I was able to speak the first 2 words into the phone "Hi... Todd..." and I broke down sobbing. Thankfully, Josh was able to finish for me and asked Todd to call my mom and have her spread the news to everyone.

We ended up staying about 2 weeks at the hospital that time. We spoke with literally dozens of doctors and specialists in many areas. We ran tests. We did MRI's and X-rays, EKG's, ultrasounds - looking for other tumors, I think there might have been a CAT scan, and any other test they thought could help in any way. All to no avail. No one knew what had caused the tumor, what kind of tumor it was, if it was cancerous, how to attack it, if they could operate, if he would even survive.

We cried. Oh, how we wept. There were even doctors who shared our tears. I remember being on my knees and pleading with Heavenly father to let me keep my baby. Josh gave Priesthood blessing after Priesthood blessing to me and to Nicholas, and was a constant strength to me. I remember at one time asking my mom why this would happen to us now... we had been striving to read our scriptures, pray often and as a family, attend church, pay our tithing and to do all of those things that we should be doing. She assured me that this wasn't a punishment! That perhaps I should try to be thankful that we had been doing those things because we needed to have the strength that doing those things brings... that we would be able to make it through whatever we were given.

They ended up sending us home with instructions to return in a few weeks. We did as they told us to, and the next visit there were more tests and then we were given the same instructions to return in a few weeks. This went on for a couple of months and then in October when we were beginning to get comfortable with things, we received a phone call from the cardiologist. He told us that the results from our last visit were not good, and that the tumor had grown considerably. He had discussed the case with all of the 14 cardiologists and the cardiothoracic surgeons several times and at length, and they were unanimous in thinking that an open-heart surgery would be a good idea. They didn't know what they might be able to accomplish, but they wanted to reduce the tumor as much as possible, and get a biopsy to see if it was cancerous and what kind of tumor it was. So, we were instructed to be back at the hospital in 2 weeks for the surgery.