Happy Easter!

OK, so we are looking at being here for a little while longer. A couple of nights ago Nick had some strange arrhythmia's, and then last night he was in a low V-Tach for 10 hours. (V-tach is not good) ... so this morning they informed us that they will probably have us stay here at least until Wednesday and there is a possibility that they will do another surgery. I'm not sure on the details yet. We are trying a different dosage of the medicine again to see if it helps, but so far it hasn't. With it being a holiday AND a weekend, there aren't as many faces around to ask questions to.

Nick is in good spirits today for the most part. The Easter Bunny made a special delivery for the children at the hospital, and that has brightened his day. Also, yesterday Aunt Bonnie stopped by with a bag of activities for him, which was very thoughtful and fun! Today we also were able to visit with Pauline and all her kids, and Dad (Grandpa Keith) and Zack. They all came over together and we had some lunch. It was good for us to be able to interact with some family for the short while that they were here. It starts feeling a little claustrophobic after a while, ya know?

I understand that Paul and Andrew are thoroughly enjoying Grandma Cathy's attention and love. (Thank you mom!) and being REALLY GOOD BOYS. It was even pointed out to me in ever so gently a way by my sister that "they don't even miss you". LOL! I'm glad. But I DO miss them. I am a little jealous too! I'm hearing about Easter egg hunts, picnics, movies, reading, playing with all Grandma's cool toys, etc., and I wish I could be there too!

We are so deeply grateful for all of you, our family and friends, for all that you have done, do and continue to do for us and our family. We are continually blessed by your love.

May you all have a Beautiful Easter Sunday!

Corrections

OK. Corrections:
1) Nicks new medicine is a THREE times a day med.
2) His therapy shock is 35 joules, not 25.
3) The sotalol (medicine) has the capability to stop arrhythmia's or worsen them. Depends on the person.

We met with a cardiologist this morning. They are extremely surprised that Nick didn't pass out before he received that last shock. They are having us try the medicine instead of adjusting the ICD any further right now because if they set the ICD to wait longer for his heart rhythm to make him pass out, it could be damaging to his heart. Also, it may take more than one shock to get the heart back into a steady rhythm, which will wear down the ICD battery faster. We need to pray that he doesn't continue to be shocked while he is conscious though because it is traumatizing-- and then we're looking at the psychological damages. It feels like we're between a rock and a hard spot. Gotta take things just a day at a time.

Nick is sad today. He wants to go home. Usually he is such a good sport about being here. We wish we could do something... there's just nothing that can be done.

Thanks to all of you for your prayers. All our love!

We're here... now what?

OK. So here we are at Primary Children's Hospital. So far so good. We haven't been able to meet with the doctors yet, but they've gone ahead and started Nick on the new medicine. This one is called Sotalol. If it works, it's supposed to be great. If not, it sounds like the danger lies in causing frequent SVT. (supraventricular tachycardia-- a super fast beating of the heart) ... Which can last seconds or days. This can cause a myriad of other problems: difficulty breathing, dizziness, weakness, etc. (sounds a little like the fibrillation's he's had so often-- but until I speak to the cardiologist I wont really know the details) We'll just have to see.
This medicine is a "twice a day medicine". Once in the morning and once in the afternoon, which means I'll have to be very diligent with keeping on top of that. That's about it. Right now we are just hanging out in the hospital room watching episodes of Sesame Street, and keeping an eye on Mr. Nickster, waiting to meet with some specialists.
On a fun note, it turns out that Nick's nurse today is a grade-school friend of mine's mother! Her name is Julie Perry. It was really nice to get to chat with her and find out how her son Donovan is. I mentioned to Mom that it was a bright spot in the day and maybe one of the Lord's tender mercies for me. She agreed that it was a "nice touch". It seems so rare these days that I ever get to talk to someone from my early childhood, and I haven't heard from Donovan in about 8 or 9 years! Anyway, it was a fun surprise :)
We'll post any news that we get or that happens. Thank you all SO MUCH for your prayers and support. It means so much to us, and we KNOW that prayer works. We love you all!!

Another holiday, another shock.

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 25 joules of electircity slammed into his heart. He continually amazes us. We are so blessed to have him!!!

Say what?

As parents, we are always looking to make our kids say what we say. Iex.; "Say ' I'm sorry. ' " "Honey, Say ' Hi Grandma! How are you?' ", "Say 'I love you' ", and so on.

In the last couple of days we've had some funny ones. I asked Nick to sing me the special hug song that we sing at bed time. The first line is "You're my Honey -bunch, Sugar-plum, Pumpy-umpy-upkin". Nicks version was "You're my Honey-bunch Sugar-PUNK, pumpy-umpy-umpkin".. To be honest, his version might be a little more accurate. LOL

Another example: today while Nick was saying the lunchtime blessing on the food I tried to insert a sentence for him to say. I said "Please bless everyone to feel better." (because the boys are currently sick). Nick took my cue, but instead said "Please bless ONE OF US to feel better."

Ah, kids. What's that saying? Kid's say the darndest things? True dat.