She says it's her turn

Yesterday, I came into our office at home to find Kaiya looking at our blog with this sad face. She kept scrolling down and made some comment about how I should rename our blog to be "Cooper.com" In all fairness, she has really been amazing to her brother over the last two weeks and I'm so proud of her for being so sweet to him inspite of being jealous of all of the attention. Even Kinley prays for Cooper's "owwies" to get better still. When Kaiya saw me taking pictures of her at the gym yesterday, she was quite a ham. As much as I keep thinking she will get tired of the whole gym thing (tennis, anyone?), she is truly part monkey. She has a bunk bed and instead of climbing the ladder, she grabs the top bar, does a chin up, hooks a leg over the rail and swings herself up to the bed. The picture is grainy, but this is Kaiya finally getting her cartwheel on the beam. She has learned a back handspring on her own now and is starting to talk of wanting to be on the competitive team. Ugh!

Road to recovery

It has now been one week since surgery #2 and Coop is glad to have the first week of recovery behind him. He still walks a bit like a little old man, but he has improved a little each day. He will go back to school on Monday and we will see if he lasts all day. This picture was taken yesterday when we took Kaiya to gymnastics. He didn't do anything but rest all day, so he cannot grasp why he's so tired. I've had to give him a little education on the healing process. :) This is a kid who never naps, so seeing him so wiped out lets me know how tired he is.

Some of the steri strips are starting to peel off now and he gets freaked when he sees himself in the mirror. I had to clip a stray suture that was hanging out and other than that, his wounds all look great. You can feel his pacemaker under his armpit. We aren't used to be able to feel it, so that will take some getting used to.

The girls have struggled a bit this week with all the attention being on Cooper. They have been super sweet to Cooper, but they have been in need of some extra encouragement. Thank you so much to all of you who brought goodies, food and paid him a visit. That has lifted his spirits more than you know!

Home at last

There is really something to the Wizard of Oz phrase that "there's no place like home." We came home late last night after we were finally able to get Cooper's pain under control. His blood pressure is still mysteriously high, so we will just watch that and keep him comfy at home. He walks a bit like an old man, but he's getting around pretty well. His abdominal incision is the most sore and he didn't realize how much you use your abdominal muslces for everything. He got another blessing last night from his dad and Grandpa and it clearly helped. And, coming home to having his room decorated was so fun--thanks, Elena and Alex!

One last side story to how tough this kid is was his experience yesterday just before going in to have the old pacer out. Normally, they let parents come back and say goodbye in the OR, but because this wasn't scheduled, there wasn't a lot of extra time to have us come in. So, he got up from the pre-surgery area and had to walk gingerly with the nurse down the hall to the OR. Since he had already done this the day before, he knew that the OR is big and bright and full of equipment. But, he told us that as he was hopping up onto the operating table, the team was finalizing their instrument count and he watched them setting out the scalpels. He said it was a little freaky. Um . . . yeah!

How not to self tan

We have been giving Cooper a hard time for looking like a popsicle for the past 3 days. My mom thought it looked like the early days when self taners always make you look orange. He is anxious to get this stuff off, but he can't shower quite yet. His incisions look good so far, but we are going to be super careful. A wound infection means the pacer automatically has to come out. We are thinking of installing a hand sanitizer pump anchored next to our doorbell ringer!

It's out!

Well, we are underway again and it was not fun saying goodbye again. He had an OK night and was quite pleased with the unlimited supply of Gatorade that my co-workers stocked in the fridge for him. He ate a full sleeve of saltine crackers and that was dinner.

This morning was rough simply because of pain issues. He could only have Tylenol, which didn't make him too happy. It sucks seeing your kid in pain. :( The plan today is to let him recover for a couple hours in the post-op area and then head back up to his room for the rest of the day. We may still hopefully come home tonight if his blood pressure cooperates. They were high all day and overnight, so we will see.

As I was typing this, the surgeon just came out to let us know they are done and they handed us his old pacemaker. Nice souvenir, huh? Doug is thinking of making a necklace out of it. We will head back in just a minute to go see him. They warned us that they had to dig to get it out and he will be pretty sore, but at least it's out!

Finally, I just wanted to let all of you know who are reading this that I have felt your prayers and they have sustained us all. It is so incredibly humbling to have the support we have. Thank you!!!!

Here we go . . . again. :(

The surgeon just left and we have been squeezed into the schedule for tomorrow morning at 10 a.m. He is the same surgeon who put the pacemaker in 7 years ago and he assisted on Cooper's original open-heart procedure when he was 7 days old. It was nice to see his familiar face. He didn't hesitate to express his opinion that this shouldn't have happened--that the cardiologist today should have had someone on standby. There was lots of discussion today between the two cardiologists about whether or not to go take it out or not. I hate sometimes that medicine is not an exact science!

Now that Cooper has had some time to digest that this is going to happen again tomorrow, he is doing OK. Have I mentioned what a champ this kid is? Since he can't eat after midnight again, we are sitting here trying to plan his dinner menu.

It took him quite a few hours to really come out of his anesthesia buzz, but now he is sitting here playing X-Box with his dad. His sense of humor came back in full force because one of the first things he said when he woke up was that his dad looked like Roco Baldeali (a major league baseball player for Tampa Bay who apparently looks kind of goofy--I don't even know who this dude is!) and that the anesthesia mask tasted like crap and not like bubble gum.

I will update again tomorrow after the old pacer is finally out!!

Good News and Bad News

Cooper is out of surgery and we are just waiting to go see him now. The good news is that the new pacemaker placement went very well and he tolerated the procedure with flying colors. The bad news is that the old pacemaker is so imbedded in his abdominal muscle and so high up that the cardiologist (who is not a true surgeon) did not feel comfortable going in and removing the old one. She thought there would be a cardiothoracic surgeon available to help her get the old one out, but no such luck. :( The picture is a diagram of where the pacemaker was placed, but just a little more toward the underarm. It's actually right under the armpit.

So . . . we are now waiting to hear what our next step is. It appears that they may try to go back in tomorrow and get the old one out. Unfortunately, that means he can't eat after midnight again and it means general anesthetic tomorrow (assuming they can squeeze him in tomorrow). We are going to push for them to do it now instead of having to come back another time. The cardiologist and I both agree the old one needs to come out because he essentially has two pacers running at the same time right now. The old one has been turned down so that it doesn't interfere with the new one, but there are no guarantees that it won't interfere.

I think I'm most dreading going to tell Cooper right now that he's not done. :(

We are underway

Well, we are underway. They took Cooper back at about 10:15 and let me just tell you that this kid is a rock. They offered him a sedative at least three times and so did I and when he refused, I asked if they could give it to me instead. No such luck. He got to go to a Rockies game with his dad and grandpa last night, so he was in good spirits last night and this morning. He had no nerves until they took him back to the OR (which is a very specialized OR with more equipment than you can imagine). He hopped up onto the table and at that point, he got super nervous. Doug and I could see his heart beating through his hospital gown. We were both brave and made sure he didn't see our tears--those came after we kissed him goodbye. We are so grateful for the family-centered care here and that they allow parents to gown up and be in the OR during anesthesia induction.

The surgeon expects the procedure to take about 3 hours and warned us that they may have to consult another surgeon to get the old pacemaker out of his abdomen because it is buried so far down in the muscle. They will update us every 45 minutes and I know he is in good hands.

He will not be happy with me posting this photo for the sole reason that he absolutely hated the gown. It had little spacemen all over it and he felt stupid in it. But, I needed this photo to remember just how brave this young man is!!

Spring Broken

Well, instead of Spring Break this week, we had Spring Broken. Cooper decided to contract strep throat, so he felt poopy all week and our weather was less than spectacular. The week before, Kinley decided to get sick on Easter Day. This is just proof that we should have been in Scottsdale like we have been for the last 10 years! The kids were such troopers about it (it might have helped, too, that WE finally got a Wii). We also managed to make cookies and watch a couple movies.

Fortunately, we caught the strep in time that it won't cause any surgery delays and we are still all set for that this Thursday. I talked to Cooper's surgeon while I was at work on Thursday and she is amazing. Membership certainly has its privileges. I took care of an 8-day old baby who just got the same pacemaker that Cooper is getting and I was definitely able to connect with that family.

By Friday, everyone had cabin fever, so we ventured to Chuck E. Cheese's, played some Wii called it a week. We all woke up with sore shoulders from too much Wii tennis, golf and baseball, so it was a good thing we had the weekend to recover!

After Chuck E. Cheese's, I made the girls take a shower (a must after going to a place like that) and they discovered my shower caps. They hate having to wash their hair all the time, so they were feeling quite clever. It was so cute, but a sad mommy moment realizing my girls are both old enough to do this kind of thing by themselves! :(

My next post will be an update from Children's on Thursday. Thanks to all of you for your well wishes and prayers going into this week!