On the Brighter Side

Nick is doing pretty well. We think. He hasn't complained of any problems, and so far we haven't seen anything too different. We expect he's still having stuff happen, but at least it isn't slowing him down.
I wanted to write down a couple of bright spots from this past week that I will want to remember later on, so...
Paul learned to tie his own shoes this week-- Thanks to Grandma Cathy! He is so pleased with himself. I love to see him feel confident and watch his self-esteem grow. He also is working on jump roping. And he is excited to learn that he will be getting some big bucks from the Tooth Fairy again because the dentist has just informed him that we need to pull 4 bottom teeth to make room for those bigger teeth that are on their way in. It's been a big week for Paul too!
Nick is picking up on Paul's enthusiasm for spelling. The two of them constantly go around the house spelling any words they know and asking me how to spell things. Pretty soon I'm gonna throw a big word at them like pumpernickel or supercalifragilisticexpialidocious. LOL
I have to share this funny story of something Nick did while at the hospital. On Easter Sunday we were walking to visit another congenital heart defect (CHD) child patient when Nick's male nurse asked if he was going to visit his girlfriend. Nick said no, that he doesn't have a girlfriend. The nurse said "Oh, are girls gross?" and Nick said; "No..... girls aren't gross, ..... poop is gross. We don't eat poop."
I was stunned at first and then had to just laugh. Yes it's true. We have actually had to have that conversation. Poop is gross. And we don't eat it. Or paint with it. Or play with it. ETC. We were like:"Nice, Nick. Lets go for that walk."
Andrew is talking more and more and in really good sentences. And he is doing a lot of comparing. At Mom's last week he told her all the time things like: "We have a phone at my house," and "I have a sandwich at my house." Etc. He is learning so many new things each day, and is ever increasing his copycat abilities. Today Josh told me something exasperating (I can't remember now what it was) but I exclaimed "My heck." and in a tiny little echo not 2 seconds later Andrew said in the same tone "My heck." We both started to laugh. Nothing like a 2 year old for instant replays.
It's fun to watch them grow. It's also fun to be able to involve everyone in an activity.
We're still exhausted, but it is SO GOOD to be home. I just want to sit in my own little cozy hollow and ignore reality and life for a while, basking in the sunshine of my life-- my little family.

Home

After 8 days at PCMC we are finally home. They released Nick yesterday from the hospital. There's just not much that they can do for him there. They approached the idea of a heart transplant (again) but we still don't want to do that, so that's out. They are also thinking about another possible surgery, but they need to talk with Nick's regular cardiologist, Dr. Cowley, first and get his input and he is un-reachable for about another week.
Nick seems fine for the most part. Surprisingly fine for what his heart is doing. He is still having low ventricular tachycardia and bradycardia and arrhythmia's, however, we think that this new medicine has slowed the V-tach enough to cause him to NOT receive shocks from his ICD. We think.
What this means is that Nick will continue to have these strains on his heart from the crazy beating, but hopefully will not get as many shocks. Our unknown is WHICH IS BETTER? We're concerned that the irregular beating will wear on his heart a lot - and we're not sure how damaging that will be, but we are also very concerned about him continuing to receive shocks while he is conscious because it is traumatizing and we don't want him to have psychological problems due to this. (Like being afraid to ever do anything because he might get a shock). It's a tough call.
Everyone is kind of at a loss as to what to do.
We are so LUCKY that he is doing so well. Repeatedly the nurses would hurry in to the room while watching his monitors and ask him how he was feeling and if he was OK, and 98% he was cool as a cucumber and doing really well. A couple of times he felt sick to his stomach (probably due to the heart rate), but for the majority of the time he was good.

The Lord is good to us. And for now, we will continue to just take things a day at a time.

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!!!