Thursday

Future Doctor

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 =)

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.

Sunday

And he's OOOOUUUTTTTTAAAA there!!

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"? =)

Friday

Courage

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.

Wednesday

ITCH

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!

Monday

OUT OF ICU

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!

Sunday

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.

Saturday

Making progress!

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!

Friday

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.

Thursday

Chest closure

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.

Tuesday

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

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!

Friday

THANK YOU

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

Tuesday

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.


Saturday


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. =)

Sunday

SLC again

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.... =)

Tuesday
















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.

Thursday


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.

Tuesday

Ask the Mayo?

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!