Heart Walk

Drew ready to cut the ribbon

Thank you so much to everyone who donated on our fundraiser webpage! We were absolutely overwhelmed with support. We were able to raise $1730 for the American Heart Association. That's the most we've ever raised in our four years of participating in the Heart Walk. Thank you, Thank you, Thank you!

Drew had a fever the night before the heart walk and we were worried about having to miss it. The forecast also called for rain so we were nervous we'd get rained on during the walk. That morning Drew seemed ok so we decided to go for it. We put on our matching Children's Heart Fund T-shirts and made it over to the park by 8:30. We met up with Grandpa Dave, who drove out to do the walk with us, then got registered and waited by the ribbon. Drew was supposed to cut the ribbon with another little girl with CHD. They were ready to cut the ribbon when the cars heading up the front of the walk all began honking. Both kids covered their ears and were too scared to cut the ribbon! The other girl's mom ended up having to do it.

We did the shorter version of the walk (the 1-mile loop) so that if Drew wasn't feeling good we could leave quickly, but he still seemed fine. We walked with some other heart families and even met a few new ones. After crossing the finish line we headed over to the VIP booth for survivors and had breakfast. Then we walked around a bit and headed home. It didn't start raining until we were on the freeway. It was a great start to a Saturday morning.

Our family ready to walk

Drew and his heart buddy Casey

Grandpa Dave walked with us

Later that night, still wearing our CHF shirts at the ER

Getting Better

At Drew's appointment this morning his oxygen sats were back to normal. Thank goodness! He was having stridor (a high-pitched sound heard on inhalation) during rest this morning (not while he was coughing) and so the doctor gave him a dose of steroids in the office. We are now saying it was croup that made him so sick. We are going to continue his breathing treatments and finish the antibiotics and pray for the best.

He was back to his normal self today, running through the doctor's office, riding his bike outside and playing with Ava. It was so good to see him feeling better. It drastically improved MY mood anyway.

JT!

JT bringing sexy back to SacTown

Last night I got to go to the Justin Timberlake concert with a couple of friends. The show was awesome and just what I needed! It was great to have something to look forward to after our rough couple of days in the hospital and at home. We also had great tickets on the floor and we were so close to the stage! It was totally worth the aching feet and back we had after it was over (are we getting old?).

Rose, me and Dee in what Dan called our "Justin uniform"

I love you Justin!

If you look between the screens, you can see Timbaland

Drew also had a much better night last night. Dan said he was coughing a lot early in the night, but was able to get some of the junk out of his chest, which I'm sure helped a lot. He slept so well last night without coughing that I had to get up to check on him and make sure he was still breathing. He was having trouble breathing this morning around 6 but we took care of it with another breathing treatment and we have another appointment this morning for the doctor to check him. He seems a lot better this morning! So it was a great night all around!

Rough Night

We had a rough night. It seems like Drew has gotten worse since we've been home. He's coughing a lot more and had another fever in the middle of the night. I borrowed a friend's sat monitor and he his oxygen levels are 77%. Normal for him is 85. We gave him two breathing treatments last night which seemed to help a bit, but he ended up in bed with us this morning. Which is fine with me, at least I can see what's happening and have him close by.

We saw the pediatrician this morning for his follow up appointment. She says he didn't have pneumonia and that the x-ray didn't indicate that he did. So I guess we got IV antibiotics just because they didn't know what he had. Then she listened to his lungs and said it sounded like he had pneumonia now. Great. She gave him a breathing treatment in the office and afterwards she couldn't hear it anymore. She said because of that she thinks its a virus and his airways are reacting to it. She called cardiology to check with them and recommended we do around the clock breathing treatments every four hours and see her again in the morning. She is hoping his sats will be coming up by then.

I am concerned. The poor kid is coughing so much he can't eat. Iam hoping we're all doing the right thing by keeping him home. I don't want him to have to be in the hospital especially when we had a perfectly good, working IV in yesterday that we just pulled out.

Home

Today we had our favorite nurse, Michelle, taking care of Drew. If she is working when we are there, she is his nurse. We love her! I thank her for getting us out of there today and being such a great advocate for Drew. The doctors wanted to test his calcium level which would require another stick. She said no. He doesn't need it. They really pushed the issue so she said she would try to get it out of his IV as long as they switched him to oral antibiotics. She didn't want to risk losing the IV if they were going to make her place another one for IV antibiotics. So they said ok. She tried to get blood out of the line and couldn't get any. The Doctors again wanted to stick him. She said no, there is no reason to do that. Call endocrine (who follows his calcium) and ask them if they need it checked. So they did and endocrine said no, its fine. She totally saved him from another traumatizing poke. As it is the kid is terrified of band-aids. Some kids think they make you feel better, he knows he gets them after they are done poking around in his veins. He seriously cries when he sees them. He cried and shouted "I didn't want to!" every time the nurse even approached his IV.

Well, since Michelle got him switched to oral antibiotics and he hadn't had a fever yet today there was no reason we couldn't give him antibiotics at home. We were discharged around 3:30 and after a quick stop at the pharmacy to pick up his meds we are home. Yay! We have our whole family together in one place! Drew fell asleep in the car on the way after saying "I'm not tired."He and Dan are napping right now and I am hanging out with Ava. We've got a friend bringing dinner over and we are planning on just having a mellow night and going to bed early. We've got a follow up appointment tomorrow with our pediatrician and hopefully he'll just keep getting better each day. He was in a much better mood today and we visited the playroom, went on a wagon ride to see the fish in the hospital lobby, and played cars. He is excited to come home and play with his train table.

Oh, and in case you were wondering what they decided made him sick, the doctors are going with bacterial pneumonia. Dan and I are not sure if we buy it, but it doesn't really matter as long as he is getting better and he is home.

Monday Morning

After I left last night Drew did spike another fever of 102. They had to draw blood for more cultures. Dan says they found the best nurse on the unit to do it. I asked if he believed them and he said yes. He said it took a long time for them to look, but once they started they got it quickly. They also got a roommate in last night but Dan says they were quiet once he got admitted and everyone slept well. Haven't heard anything new yet this morning, but we'll keep you posted.

I've got a friend coming to watch Ava this morning at 9:30. I've used my morning to catch up on household chores that were being neglected. I'm also going to give Ava a bath because I can't remember the last time she had one.

Thanks to everyone who has been helping us out with food and babysitting. We couldn't do it without you! And thank you so much for your words of encouragement and prayers. It's just what I need!

No News

When I got to the hospital this morning Drew just didn't look good to me. Yesterday when he was free of the fever he was looking and acting normal, but today he just looked sicker. He spent most of the morning laying in bed watching movies. He slept most of the afternoon. When he woke up around 5:30 he looked like he was feeling a little better and he ate all the macaroni and cheese that our friends brought him for dinner. He's been coughing more now, but still not as much as usual when he has pneumonia. The fever came back last night around 4 am and again this afternoon. Both times in the 102 range. There was talk of possibly sending us home today, but with the fevers coming back they wanted Drew to stay another night. If he spikes another fever tonight they are going to want to do more blood cultures. The ones they did last night haven't shown anything yet, so that is a good sign. His oxygen levels are still normal, so we still don't really know what the problem is.

I came home around 6:30 so I could spend a little time with Ava before bed. I know she is too young to understand, but I just feel horrible leaving her so last minute with no mommy or daddy for days at a time. I had a lot of fun playing with her before bed and she helped to lift my spirits a little.

Speaking of which, I did pretty well today except for a brief moment when I went to the gift shop to get Drew a present. I let my mind run away with me and got really scared. I was scared he had some serious infection that might kill him. I wondered if we'd be able to take him home. I know that seems extreme after just a fever, but it happens. Things can change so quickly for these kids. So for other heart moms reading this, do you do that? And if you don't do that, how do you avoid it? I let myself be sad for a bit then got myself together and went back to his room. And when I got there his fever had gone down, thank God.

So Dan's spending the night with him again tonight and I'll relieve him in the morning. We haven't had a roommate all day so hopefully they will both be able to get some good sleep tonight.

Update

We had to take Drew to the ER yesterday because he's had a high fever for two days. At one point it got up to 103.1, which is very high for him. Because it was the weekend we had to take him to the ER. As far as ER visits go, it was the best one ever. There was no line for triage and we got taken back into the Peds ER immediately. Although the triage nurse did say "he's got some weird syndrome I've never heard of." Luckily we found her insensitive comment humorous and not offensive. Another quote of the evening from Drew was "Daddy, is the clock moving slower?" No, but it sure does seem like that!

The med student we had taking our history and doing the prelimary evaluation was great, better than some residents we've had. I told them immediately that if he required an IV I wanted the pediatric transport team to do it and they honored that request. They did a urine analysis, blood cultures, strep test, and chest x-ray. The transport team was able to get the IV in only two tries, and while it was still very traumatic for Drew it's much better than the 8-10 times it's taken in the past. The x-ray people were great-even x-raying his dog first and showing him the pictures. We got there around 4 and around 8 they decided it looks like an emerging pneumonia and he should be admitted, mostly to keep an eye on him. We hung around the ER until midnight when he was finally transferred to a bed on the pediatric floor. His fever is still coming back when the motrin or tylenol wears off, but in between fevers he's acting pretty normal. His oxygen saturations are still normal for him at around 85 and he doesn't need oxygen. Today the blood cultures will come back and we're hoping for negative results on those. So, that's the update.

Drew Admitted to UCDMC

We've had a long day and I am exhausted. We took Drew to the ER this afternoon because he's had a high fever (it got up to 103.1). Nine hours later he was finally admitted to his own room on the pediatric floor. Looks like another pneumonia, but I think it was borderline on admitting us. I'll write more tomorrow, but please keep us in your thoughts and prayers.

Gratitude

I am thankful:

• that today, my son is at home with me, healthy and happy
• for the wonderful people at his preschool who care about him staying healthy as much as I do
• for our new pediatrician, who wanted to meet and get to know Drew before he gets sick
• that I have God in my life and I can turn to Him when I am overwhelmed
• for good friends who remind me of all these things
• for my beautiful family

Celebrity Guest

2004

2005

2006

Since Drew has participated in the Heart Walk every year of his life, it's only natural that the AHA would want him to cut the ribbon before the walk on Saturday. We got a call from the American Heart Association yesterday and they asked if we'd be willing to have him cut the ribbon during the opening ceremony. Of course we said yes, so now we've got to practice our cutting skills.

We're still here!

It's been a while since I've posted. Partly because there's not much going on, and partly because I'm sick and I haven't been doing anything.

I'd like to take this opportunity to brag about my husband. I've been sick since Wednesday and he has been taking such good care of me. He's been getting up with the kids if they wake up at night and again in the morning. He's always asking me if I need anything and even goes to the store to get medicine for me. He's been making breakfast, lunch and dinner AND cleaning up. He stayed home from a bike ride so I wouldn't have to take care of the kids by myself. And he does all of this without complaining. I'm not sure if I would be so gracious. What a great guy!

What has been going on? Well we're just getting into a routine again. Drew has preschool Tuesday and Thursday. Tuesday while he's in school I am joining a Mom's Connection group that meets at the church. It's a Bible study/mom's social gathering where we can share about our lives, our kids, our struggles and triumphs. They also provide free child care for kids under 5, so I've got Ava covered too. Wednesday is another mom's group that I went to last year and am planning to do again unless it gets to be too much. Thursday I'm planning to start a little girl playgroup for the little sisters while their big brothers are in school. That leaves Mondays and Fridays open for other playdates or activities and I'm hoping to make it a habit to go the gym those mornings as well.

Speaking of which, I am training for a half-marathon. Once again I was waiting to see how the training went before I officially signed up and told people about it. I was able to run 10 miles two weekends ago so I think I'll be able to get to 13 by October 7. Although since I was sick this weekend I skipped our long run, so I'm hoping to be able to catch up later this week.

I talked to Drew's cardiologist on the phone last week and they've increased his sildenafil dose to 3.5 ml 3 times a day. We also have an appointment with his pediatrician on Wednesday (so she can go over his chart and get to know him) and with endocrinology on Friday.

Finally, I've had those yucky vulnerable feelings about heart matters on the surface a lot lately. I don't know why I can't stuff them down like I normally do, but they are just right there on the surface waiting to bubble over. I talked to someone today who explained it to me in a way I've never heard before. And it really made sense. She said "you are in a chronic state of grieving." And it's true. Because Drew's heart condition is not an event that occured and that has an end. It is still happening. And it's not over for me. I don't know if it ever will be. I will probably always be waiting for the next emergency even if he has years of good health. Anyway, it was just a new perspective that hadn't occured to me before, but kind of explains things.

Drew's Heart Story

A friend of mine who started a new support group for parents of children with heart defects asked if we would share Drew's story on their website. If you'd like to see Drew's story you can find it here.

First Day of Preschool

Drew and his teacher

Today was Drew's first day of preschool. He loved it! He ran into the room without even saying goodbye. I had to ask him for a hug before hurrying outside so he wouldn't see my tears. I cried like a baby outside. I don't think I would have cried, had it not been for his rough beginning. I wasn't sad. It was just a milestone that I wasn't sure we'd ever get to have. And here he is, my big 3 1/2 year old miracle baby going off to preschool without me. I'm so proud of him.

When I picked him up he came running to me shouting Mommy, Mommy! Here is our conversation in the car as I remember it:

Me: What did you do in school today?
Drew: Played with toys.
Me: What else?
Drew: Played outside.
Me: What friends did you play with?
Drew: I played with Jacob and Ryan. Ryan was a sad boy. He lost his mommy.
Me: That's sad. But his mommy came back. Just like your mommy came back.
Me again: Did you have a snack?
Drew: Yeah.
Me:What did you have?
Drew: Goldfish and a cheese stick.
Me: That sounds good. Did you sing any songs?
Drew: Yes, wheels on the bus and open shut them.
Me: Did you learn anything about God today?
Drew: He made all the animals. Even whales and dolphins.
Me: That's right. He did make all the animals. Did you have a fun day today?
Drew: Yeah. I want to go to school tomorrow.

This isn't going to make me cry is it?

I've been feeling somewhat emotionally tapped out lately. I don't really know why, but I've been avoiding anything that might make me feel vulnerable. I don't want to talk to people, I don't want to share my story, I don't want to get very deep. Maybe it's denial. Maybe I'm just saving it up for early next year. In any case, you might be surprised then that a couple of days ago I attended the first meeting of a new support group for parents of children with heart defects.

I convinced my best heart-mom friend Gina to go with me. When she got to my house she said, "This isn't going to make me cry is it?" Funny, I guess we were both feeling the same way. I said "I hope not, it's the first meeting." So we get to the meeting convinced that we wouldn't be sad. As we walked into the room to sit down we notice that one of the women is pregnant. And then later a second pregnant lady came into the room. As the meeting began we were asked to introduce ourselves and talk about our kids. And both pregnant moms are carrying their heart children right now. They have the diagnosis, but haven't had to endure the surgeries and hospitalizations yet. And I was so sad. They are just starting out on this difficult journey. They don't even know yet. There was another mom there that I have met before. I knew that her son did not make it, and I thought it was due to his heart condition. It turns out he made it through his first two heart surgeries fine. He was later diagnosed with brain cancer and passed away soon after. That is so unfair and horrible I can barely stand it. Needless to say I was on the brink of tears the whole time.

Both of the pregnant moms are set to have their babies at UCSF and will have the same pediatric cardio-thoracic surgeon that did Drew's surgery. I gave them my phone number and said to call me anytime. I'd be happy to share my story with them, offer them any advice that I can and give them hope for the future. I am trying to choose to turn our negative situation into a positive. If I can help other people then at least there is some good coming out of the bad. And yes, it might make me cry, but that's a small price to pay to give another mother dealing with a terrifying situation someone to lean on.

Preschool Preview Day

I took Drew to preschool preview day on Thursday morning. It's only for an hour and the parent stays with the child. The idea is to ease them into it before we leave them there on their own next week. Pretty smart, I think. It went great! Drew had a lot of fun playing with the other kids and of course spent most of his time playing with cars and trains. They did a little mini-circle time at the end and he sat there quietly listening. Then he cried the whole way home. When I asked him why he was sad he said "I want to go to school!" Hopefully that's a good sign.

My big boy

Drew and his buddy Jacob are in the same class

Jacob and Drew during circle time