William’s scar is healing nicely.  We have been told it will be barely noticable after a while.  This picture was from six weeks post-surgery.  (Apologies for the bad lighting…it was kind of a trap that went something like “Hey William, stand there for a minute so I can check to see if my camera is working right.”  No time for a lighting check.) It has actually faded quite a bit since then.  I haven’t been able to convince him to let me take a more recent photo.  However, he is begging me to let him take his shirt off and play outside like the big boys.  He’s supposed to limit any sun exposure for the first year to minimize scaring…but I might give in just once on a cloudy afternoon…

I scheduled Katey for a long-overdue well child check-up later this month.  Although she visits her pulmonologist every month or two, it’s been a while since she’s had a routine visit to her pediatrician.  I will warn the doctor when we get there that only good news will be allowed.  I think we have all had our fill of major medical events in the past few years!

Many thanks to everyone for thoughts and prayers through this process.  We have been blessed with great family and friends and, a wonderful surgical team and a phenomenal staff of nurses at Hope Children’s Hospital.

11:10 am -William has been weaned off of his IV pain medicine and is on just Tylenol for now.  We’ll see how well this works…  He’s been up since 5:30 with a few cat naps here and there.  He finally seems to have fallen into a deeper sleep.

Mike came back from sleeping at the Ronald McDonald house around 5am and then I went to rest.  After I woke up, I sent him an email asking how William was doing.  His response was this:

William with a popsicle is a good thing! He also had some water and orange juice and was able to keep it down.  The doctor thinks he might be ready for solid foods by dinner time.

3:00 pm – Chicken nuggets for lunch!  William was in heaven with solid food and ketchup.  He had a visitor a short time ago who brought him lots of goodies, including a note from two of his new dog-friends (and lunch for Mike and I, too!).  He also received a beautiful cookie bouquet delivery from some great friends and the best kid-sitter in the world!  These have all helped to raise his spirits.  We are thankful for the support of all of our family and friends.

We checked in with the other kids today and they’re all doing well.  I think with Grandma there, they really aren’t too concerned about us coming back home.  Aiden made a list of all the things he wants to do with Grandma and I think they’re well on their way to completing it.  They’ve gone out to eat at two of their favorite places, saw a movie and played in the park.  I think an ice cream trip must be somewhere on the list…I’m sure they’ll do that too, at least once or twice, before Grandma has to go back home.

He seems to understand the problem and the process. He’s been a trooper through all of the doctor appointments but decidedly does not like having his blood drawn. I thought there we were going to need restraints this morning for his final blood draw

William was given a “loopy” drug before he left the pre-op area and was feeling really well when they wheeled him back into surgery. We got an update from the nurse just a few minutes ago…around 8:20 am. Apparently he was flirting with the nurses before he was sedated.

According to the nurse, he was sedated easily and they have inserted 4 IVs. They will be doing another echo-cardiogram (his 4th one so far!) and then will begin the surgery.

Waiting (not so) patiently for the next update…

9:10 am – William is officially in surgery.

9:40 am – Surgery is going well.  They found and repaired a notch in his mitral valve and will be patching the hole next.

10:50 am – The bulk of the surgery is finished.  William is being weaned of the heart-lung bypass machine and his heart is starting to pump again.  There is a slight arrhythmia, which is not completely unexpected. They’ve inserted a temporary pace maker that they may use if his heart doesn’t resume rhythm on its own.  It will be easily removed before he comes home. He’ll be in surgery for another hour or so and we’ll get to see him in the PICU in about 2 hours.

11:30 am – The surgery is done!  William is doing very well.  He is on a low dose of a med to regulate his heartbeat and hasn’t had to use the pacemaker.  They are taking the breathing tube out and preparing to move him to ICU.  Mike and I have been moved to the pediatric family waiting room.  We will see them wheel him out of the OR and then it will be about 30 minutes until we’re able to go into the room with him.

12:00 pm – William was just wheeled past the PICU family waiting room to his room.  We’ll see him in about 30 minutes.

2:30 pm – William is in his room finally resting comfortably.  His main complaint is that he’s thirsty and needs a drink.  He is not shy is demanding this from everyone who comes in to check on him.  Unfortunately, he can’t have anything by mouth until about 6 hours after surgery.  Thankfully, he is sleeping soundly now.  He was getting a little…ok, a lot agitated a bit ago and they adjusted his pain meds.  It must have done the trick as he’s been sleeping ever since.

9:50 pm – The afternoon and evening have gone well.  William has been in a lot of pain but they’re doing their best to control it.  Oddly, the pain is not so much from his chest incision but more from his stomach and catheter.  He has slept on an off all day and has been groggy even when he’s awake.  The grogginess, however, does not affect his incessant pleas for a drink…from a cup…of water…a big cup…not that sponge thing!!  So far, we have only been able to use a sponge sucker (little sponge on the end of a stick…looks just like a sucker but apparently not as fulfilling to the patient) to wet the inside of his mouth.  William has figured out that if he clamps his teeth down he can suck the water out of the sponge.  This does not make his nurses happy.

We were given a room at the Ronald McDonald House for the duration of our stay.  Mike has been by William’s bedside the entire day.  He took a break from 7:00-7:45 to eat, but only because the nurses’ shift change kicked us out of the room.  I finally convinced him to go to our room and sleep for a few hours.  Back to the Ronald McDonald House…what a fantastic thing!  It is such a comfort to know that there is food, drink, and a comfortable Sleep Number bed less than a block away whenever we need it.  It will be my charity of choice from this point forward.

Aiden’s Answer:  I do dishes so my family can eat.  It is hard but I do it.

Perhaps he’s been on the receiving end of the speech “because if you don’t put the dirty dishes in the dishwasher (or take the clean dishes out) we won’t have any clean dishes left to eat on!” one too many times.  At least I know he’s listening…

We are all so thrilled with the new addition!  Katey was pretty adamant that the new baby would be a girl…after all, they would share the same birthday month so it HAD to be a girl…but is content that the baby is a boy.  She will be so excited to hold him when we visit this weekend!

Fast forward to Wednesday night of this week…Katey and I were in Target and walked quickly past the toy aisle.  There was a Barbie display on the end cap that she spotted and begged to look at.  Because she is a girl…and I am a push-over…I stopped “really quick to look with your eyes but no touching with your hands”.  She looked for a minute and then turned to me and said…

“Hey Mom, remember you said I could have a Barbie doll when I was done sucking my thumb?  Well, I still suck my thumb sometimes and you got me a Barbie doll for my birthday anyway.  Guess that didn’t work, huh?”

No, Katey, I guess it didn’t work.  One step forward…three steps back.

Katey's 4th Birthday

Birthday outfit and matching Barbie.

Happy Birthday Katey!

Celebrating Katey's 4th birthday at Blackjack Mtn. in Michigan.

Blackjack Ski Resort - Feb 2010

1. John J. is a wonderful ski instructor. I learned more from him in 2 trips down the hill than I did in 2 excruciating hours of ski school.

2. Ski school is great for kids but pure hell for those of us who lack the patience to ‘step and glide…step and glide’. There is no ‘step and glide’ going down the hill…it’s more of a ‘lean forward and pray’ action.

3. Just because it’s called the ‘bunny hill’ doesn’t mean it’s easy.

4. Falling isn’t so bad. Especially if you have someone there to laugh with you (Thanks Kurt!) and someone there to help you back up (Thanks Stacey!).

5. Being a control freak and skiing do not go well together. I must let go of the need to control…because when I’m up at the top of the hill looking down, I know I have truly given up all control. Many Hail Mary’s and the good grace of John J. saved my sanity and likely my life.

6. My boys amaze me.

– Alex took to the sport like he was born on skis. He attacked the hills with grace and control that I didn’t realize he possessed.

– I expected Aiden to give up on the first day. Instead, he approached the bunny hill (and the tow rope) with unwavering tenacity. I’m sure he’s been up and down that hill hundreds of times over the past three days and would likely go a hundred more times if we stayed longer. I’m glad he finally gathered the courage to tackle and conquer the lift and the ‘big hill’ with his dad.

– William, who declared leading up to the trip, that he did not need ski school because 8 year old Jakob R. already told him how to do it and he watched it on TV once, was humbled a bit. But instead of giving up, he poured all of his energy and emotion into learning how to ski. I think he fell down on 90% of his runs but it never, ever stopped him from going back up one more time.

7. My husband amazes me! I expected him to stick to the snowmobiles and leave the skiing to me. Oh how wrong I was!

8. Watching my family ski is just as fulfilling as doing it myself. I’m glad they’re getting the opportunity to learn when they’re young.

9. But I’ll always wish I would have gone down that hill just one more time.

10. Good friends are worth more than gold. I will be forever grateful to them for inviting our family along on big, crazy trips like these. The memories made with old and new friends are priceless.

…all by 5:30 this evening.

And what am I doing?  Updating my blog.  Priorities!!

William, you will notice, is not in costume.  He has been unbelievably badly behaved at daycare lately and was warned that if he didn’t have a good day on Halloween, he would not be going trick-or-treating.  He was beyond awful that day (gee, think it could have been all the sugar from the *morning* party? ugh…) so we had to follow through and not let him trick-or-treat.  He walked along with us but had to pass up the candy offered to him.

For the kids that did get to dress up, I was a huge slacker…normally I make the kids’ costumes.  I found Katey’s costume at Old Navy for $5.  It was cheap and warm so I couldn’t pass it up.  Aiden had his heart set on being an army guy, which was quick and easy and meant no work for me.

Alex, too, led me to believe he was going to be an army guy until about 6 pm the night before Halloween when he announced that actually wanted to be a robot as we had discussed earlier in the month.  So I found myself making an emergency trip to Wal-Mart and working until the wee hours of the morning on a robot costume.  I even got up early the next morning to finish it as Alex needed it for a Halloween parade at school.  For those of you that know me, you know what a chore it is for me to get up early in the morning!  In all, it’s not my best work.  I feel like I need to make another robot costume next year for one of the kids to redeem myself.

I think my favorite two costumes over the years have been the ducks and duck hunter in 2005 or the cupcake in 2006 .  This was when my kids were still young enough to go along with my suggestions, although I have a hard time believing I actually put Aiden in a cupcake costume!  Sometime, somewhere this will come back to bite me.