You're WHAT?

Today was a fun day. We're talking a keep-you-busy-barely-catch-your-breath kind of a day. There was school for Paul, and morning routine things with the little ones, then there was lunch and a little friend came to play, we made kool-aid playdough, then of course played with it, we printed out Christmas coloring pages and made books and then colored them, we made rice krispie treats and cut them out into Christmas shapes, played "tickle" and "cookie" monsters, watched Frosty the Snowman on TV, had a nap, made and ate dinner, read, and watched another nighttime Christmas movie on TV. Throw in the regular things like laundry, and dishes, picking up toys right and left, making beds, errands in town, and STILL somehow.... through all of this there was time to utter the words "I'm bored."

You've got to be kidding. LOL. Well, I tried.

A Quiet Thanksgiving

We had a nice little and for the most part quiet Thanksgiving. (it's never completely quiet here, LOL) Since we couldn't be with others this year we just took things easy. Josh slept in late and then worked in the garage for an hour or so, the kids and I made some apple-turkeys (see picture) and we kind of lazed about watching Christmas movies throughout the day. I made us a typical T-day dinner (although the kids didn't eat much of it-- they were still full from grilled cheese sandwiches they had for lunch). The boys showed us their best turkey noises... what good gobblers we have here at our house! We also got out the Christmas tree and decorations. All in all, it was a pretty nice day.

The Wounds

Tonight I had a chance to change Nicks bandages and kind of examine the wounds a bit. They are looking really good. You can see in the first picture how the device kind of protrudes from his belly. The swelling has gone down a ways, and as it goes down all the way the device will be more noticeable. But it looks good. And just the fact that he let me touch him was HUGE.

Thankfully, Paul and Andrew are not being too rambunctious yet. It's so nice to be all together again. They are being sweet and gentle and worried about him.

Paul is counting the days to Thanksgiving and Christmas! He's doing really well at reading the calendar and also the clock. He's such a quick learner. He's also become very defensive of the little ones. If I ever use my exasperated tone of voice with the babies he comes right up to me and tells me to not be mad, they're just babies and they just wanted _______(whatever).

Andrew is learning a lot of new words and has turned into a BIG tease. And a bit of a food thief. If there is anything he wants (cube of butter, cheese, gallon of milk, cookies) he just finds a way to snag some while we're not looking. Funny boy.

Despite all the craziness that seems to always happen this time of year, I really enjoy harvest time and the holidays. They have a cozy-ness and way of reminding me how much we have to be thankful for.

Home Sweet Home

Well, we did it... we made it home tonight! They discharged Nick from the hospital just before 5 pm tonight. Kind of a funny thing though, Nick didn't want to go home. He was too afraid he would hurt and so he begged to just lay there in his hospital bed. We finally convinced him and he seems to be feeling a lot better. He still can't move much at all, and is VERY sensitive to the touch, but hopefully it's nothing a few weeks won't heal. And in a day or so he can even shower. (no baths for a while, but it'll be nice to get him all washed off). We're only using Ibuprofen and Tylenol now too, which is also good. We're glad to have him off the narcotics.
We hope that the kinks have been worked through on the ICD. The other night (after Nick had received a shock earlier in the day) he was falling asleep and I was sitting next to him. You know how when you fall asleep sometimes your body does those uncontrollable twitches? Well his did and I caught it out of the corner of my eye and my heart about leapt out of my chest fearing he had just received another shock. It's kind of funny now, and NOT, at the same time.
We're just so glad to be home. Even though it's nice to be so close to so many specialists who care so much about him, it's just nice to be HOME again- even with the fatigue from the last week setting in!
We can't thank everyone enough for all your prayers. Heavenly Father has been so good to us. What a wonderful time of year to remember it.

A Glimmer

We got a glimmer of our little Nick tonight. He started to talk a little and is beginning to move around a tiny bit. And, he is making us laugh. He decided to press the call button for the nurse to come in, REPEATEDLY. A few times the nurse came in (tonight it's a man) and Nick would just kind of scowl at him. Finally he confessed to what he wanted to have happen when he called for the nurse... it was this:
"I want a GIRL to come in!" The little twerp.

He's doing ok tonight. He's still in pain and not really moving much, but as I mentioned is beginning to show his personality again. Thank goodness. He's still keeping everyone on their toes though, his heart is just continuing to misbehave and alarm the nurses and in effect, us. Thankfully it hasn't required another "therapy" (shock) from the ICD.

Some excitement this morning

So, this morning we were trying to get Nick ready to go for a walk, I was changing his pull-up while Darla held him up, he got a jolt from the defibrilator which Darla felt too. Poor little guy didn't like that at all. I know it must have hurt pretty bad. It looked like he just latched on to a live wire in a wall or something the way he got all tight for just a second.
The doctor and his assistants came in soon after that to try to figure out what made it go off and decided that it was just doing it's job. His heart went into a really fast rate and stayed at that rate for fourteen seconds so the ICD hit him with the shock. His heart responded the way that it should and decreased it's rate. So, even though Nick seemed ok before the thing happened, the tachycardia may have made him pass out anyway, but it seemed to be an unnecessary shock because he was still very coherent. Now the doctors are going to try to adjust the ICD to hit him a little later I think, I know they are re-setting it, I'm just not sure how long they dare let the rythms go before having the ICD charge up and hit him. I'm not the expert here so I'm leaving that to them.
Anyway, I feel bad that it happened and I know that it hurt, I just hope that they can get something figured out to compromise enough so that he doesn't have to feel the shocks.
Thanks for all your prayers and support through this.

Another Night Here

We will be staying tonight here at Primary's... Nick just isn't seeming like himself at all yet and is in a lot of pain. They've added some Lortab and will decrease the morphine he's taking to help with the hurt. We'll see what tonight and tomorrow bring. He has hardly moved a single muscle. We're going to try to force him to take a few steps walking around tonight and see if we can't get some circulation and things moving.
Really, with Nick, all we can do is to take things one tiny step at a time. He is such a unique situation!

Two sweet little things Nick did yesterday:

First, I was talking to him and told him to make sure and tell us if he needed to go potty and to try not to go in his pull up. He looked at me all serious and said; "Don't talk down to me Mom." LOL


Second, after being in surgery all day, while in the recovery room he looked at me and got kind of teary eyed. I asked him what was the matter and he said "But I didn't get to see Dr. Cowley yet! You said I can see Dr. Cowley, and I didn't."
(I had to then explain that Dr. Cowley had come to see Nick while he was sleeping and that he would get to see him the next day too... But how sweet is that? He's just been through the ringer and all he's thinking about is how he didn't get to see his beloved cardiologist).

Implantable Cardioverter Defibrillator

Last night just after 6:00 pm they still hadn't finished working on Nick. The cardiologists called us in and told us that Nick had fibrillated 2 times in the time they had been working on him and that he had been having a lot of ventricular tachycardia. They felt very strongly that the best option would be to implant a cardioverter defibrilator. (the intercardiac device I mentioned in the previous blog). Apparently there is a way to do it without breaking open his chest, and so they did it. He was in surgery until 10:00pm but they wanted to do it while he was already under anesthesia and also because of the fibrillations he had had while they were in there-- they didn't want to risk waiting and Nick needing the machine. The device is located in his abdomen wall on the left side just above his waistline. He has a new scar there now to show off (about 3 or so inches long) and also a new scar under his left arm kind of up in the armpit about an inch long. (They needed to run one on the leads from up there.) Hopefully this is not something that he will have to use a lot. Hopefully this is just a safeguard and a safety net in case his little heart acts up too much.
We saw it work this morning. His heart rate was running pretty fast for a few minutes when the pacer jumped into action and slowed it down to a better rate. There is a lot of work involved in getting the device programmed for his body because as we all know children are excitable and feisty sometimes, and the difficulty lies in programming the device just right so that it doesn't shock him unnecessarily. His excitement could trick the device into thinking he is fibrillating when he is not. If he receives a shock unnecessarily it could be painful to him and so we are praying that they can program things to just the right point. Too little of voltage and it wont help, too much and it could be painful. We think that they have got a good idea of where things should be so far. They are very careful.The device should last about 4 years before needing to replace it or its battery.
Right now we are kind of taking things a few minutes at a time. His pain is pretty high and he is on morphine and motrin. They also have him on some routine post-surgery antibiotics, and have decided to change heart medicines. He is being AMAZING through all of this. You can tell for sure that he doesn't feel good and is pain-- he is breathing in grunts, not moving almost at all, has very little appetite, isn't talking, and cries out if he is moved at all. But through it all, he tries to give us a weak little half smiles and nod his answers to our questions. He is being REALLY tough about all the poking and prodding and bandages and wires and stuff all over him.... hardly even a whimper when they have to do things to him. It's very impressive.
It's possible that we could leave this afternoon if all seems well, but it's more likely that Josh and I will try to have them keep us another night. After they sent us home so soon when he had the open-heart surgery and we ended up back at the E.R. that night, we are a little gun-shy.
One cool thing I didn't mention-- the ICD has wireless capability and incredible recording features. So anytime it picks up an irregularity it will record it and store it for the cardiologists! Also, it has the ability to send transmissions to PCMC wirelessly, so that even if we don't know he has had something happen the machine does and will notify the doctors here. Nick will have a monitor that will be kept in his room at night and as long as he is within like 30ft of this monitor it will record any odd happenings. I think that is awesome.
Nick will have a few restrictions for a while.. he'll need to try to not roughhouse or be too excited especially in the next month while the device settles in.
He needs to try to avoid some electromagnetic fields like anti-theft columns they have at movie rental places and libraries (meaning he shouldn't linger near them. as long as he just walks normally through then it should be fine). At the airport he will have to notify security and provide them with his medical identification to show he has a ICD and they will not be able to run the wand over his heart more that once every 30 seconds. And many regular household items he will just need to keep at least 6 inches away from his device-- such as an electric mixer, hair dryer, plug-in shaver, electric or ultrasonic toothbrush, magnetic bracelet or clasps, sewing machines, back massagers, magnetic chair pads... etc...
Things like microwaves, blenders, toasters, washer or dryers,curling irons, cordless shavers, and electric blankets are low-risk.
This ICD isn't 100% and neither is medicine, but hopefully this is a better alternative to having nothing.
That's the latest, we'll let you know more as we do. LOVE YOU ALL!

Still waiting

We're here at PCMC waiting today. Nick has been in the cath lab under anesthesia for 3 hours now. They allotted 4 hours for him, but the specialist said it could take up to 5. We just got an update and it sounds like Nick's heart is acting up a little in there (which is good, because they want to see WHY it's beating irregularly) -- so, they are investigating right now trying to figure out what is causing him to have tachycardia (irregular rhythms). The nurse we spoke with said that he is doing really well. We will be staying the night here and we'll have to see what they find and what steps they take today while he's already here and in surgery.
There is a possibility that they will put in a small heart rhythm monitor which can record several minutes of heart rhythms if we need to (like if Nick faints again- I could use a remote control and tell the device to save the previous 7 minutes of rhythms, and then when we see the cardiologist he could get a print out of the readings and know just what Nick's heart had been doing before he passed out and maybe see what the problem was). There is also a little talk today about the possibility of putting in an InterCardiac Device (ICD) which is like a heart defibrillator and a pacemaker. That COULD happen today if they feel like it is REALLY REALLY necessary, but more than likely it would happen on a different day IF they decide he needs one, because of the time involved and the need to re-open the chest. (Remember, today they are just using catheters going up through the veins in his groin all the way to his heart to manipulate the electrical system).
Anyway. That's the latest. So far, so good. We'll keep the info coming as we get it. Love Y'all.

A little delay

Well, we are here in SLC, but due to miscommunication, Nick won't be seen today at PCMC. Instead he will be seen tomorrow. We will check in at same-day surgery in the morning and from there we will just take it one moment at a time. We're still not completely sure what the plan is and what they will try to accomplish tomorrow, we're just sure in the knowledge that we are working with the best of the best down here, and that's good to know.
Paul and Andrew are happy to have a few days at Grandma's and to be loved on and treated like little princes. Sometimes we feel so bad for those two... it feels like they get pushed behind the shadows quite often - with all the spotlight that Nick gets. It's so good for them to get some extra attention once in a while. Thank goodness for grandparents!
We'll keep you updated as much as we can. Thank you all for your love and concern and prayers. We really feel your support.

New news on Nick

We received news from Nicholas' cardiologist at Primary Childrens Medical Center tonight that the results from the 24 hour heart moniter test are very concerning and not so good. Apparently Nick is having very irregular and sporatic heart rates which could be the cause of him "not feeling good" , "feeling tired", and the one passing out incident.

Dr. Cowley wants us back down to the hospital immediately (he's bumped someone else to get us in on Tuesday) to do a cath lab (we're not entirely sure what this involves yet) on Nick and then he will have us meet with another cardiologist whose specialty is in the electrical system of the heart, and we'll do more tests.

The doctors at Primary Children's are phenomenal and we have a lot of faith in their capabilities. And as for Dr. Cowley, next to family, there might be no one who loves Nicholas more than him. That knowledge is very comforting. And we know that Heavenly Father is with us. With Him on our side, all is well. Thank you all for any prayers in Nicks behalf.

Inspired...

OK! I have been inspired by many of you to try to do the blogging thing. So, here goes!

Paul is a reader!! He can read a lot of things, and right now I think his favorite thing to read is Dr. Seusse's Green Eggs and Ham. It's awesome to see your 5 year old dive into reading! He read his own talk in Primary a couple of months ago, and just this weekend in SLC (at Paulines house) he read the wall words in Jessicas room "Did you think to pray?" . On our way home yesterday he kept asking everyone that question. It made us chuckle.
He has also discovered the joy of knock-knock jokes... sort of. Except he doesn't quite understand the punchline trick. He and Nick were giggling like crazy at each others attempt to tell knock knocks yesterday. (Andrew just laughed because the other 2 were laughing.)
Prime example: "Knock, knock"
"Who's there?"
"Don't you get it? I'm a banana!"
We had to laugh. We tried to explain but I'm thinking it's gonna take a little while. Lol.

We just got back from a visit to Primary Childrens Medical Center to see Nick's cardiologist and things are looking pretty much the same with his heart - so far. We are waiting for results to get back from a 24 hour test he had, but generally things look about the same. No change is definately a good thing! We want that tumor to stay the same size (shrinking would be nice, but not likely), and for his heart to keep growing. And speaking of inspiration earlier, I think we saw the work of the Lord in how we scheduled this last visit. It was supposed to have been a month earlier, but we were unable to get in. We've had some scares in that month with Nick being extremely tired and one time even passing out... so it was good to see the doctor AFTER those things had happened and discuss things. Nick absolutley LOVES his cardiologist. He hugs & loves on him, sings him songs, tells him stories, draws him pictures, spells the doctors name, tells all the nurses that Dr. Cowley is "better than Santa Claus" and looks forward for MONTHS to seeing him. Nick asked me for a few days what he could bring to Dr. Cowley - because he wanted to give him a gift.


I guess the most interesting thing to share with everyone is that we are contemplating a move to the East... And hoping that we're being inspired in this endeavor too! We're thinking that we would like to move to Tennessee-- more specifically the Nashville area. It's been a dream of Josh's for a good 15 years and it's feeling like the time might just be right. Nothing has really happened yet in starting the wheels turning, and there are a lot of details to cover, but we think this could be a real possibility for us soon. (You know they say that the humidity out there keeps everyone looking younger, so that's a plus! We could use some anti-aging & anti-stress help! LOL)