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.
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"? =)
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.
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!
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!
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.
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!
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.
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.
Just LOOK at this massive ugly thing!! THIS was inside Nicks heart. Do you realize that this is practically as big as Nicks heart?!
We feel so blessed. BEST ANNIVERSARY GIFT EVER! (it's our 10th wedding anniversary today)
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!
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.
Darla & Josh
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...
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.
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.
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.... =)
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!