Later that night, still wearing our CHF shirts at the ER
Friday, September 28, 2007
Wednesday, September 26, 2007
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 bringing sexy back to SacTownLast 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?).
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!
Tuesday, September 25, 2007
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.
Monday, September 24, 2007
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!
Sunday, September 23, 2007
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.
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.
Thursday, September 20, 2007
- 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
Tuesday, September 18, 2007
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.
Monday, September 17, 2007
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.
Friday, September 7, 2007
Tuesday, September 4, 2007
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?
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.
Monday, September 3, 2007
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.
Saturday, September 1, 2007
Drew and his buddy Jacob are in the same class
Jacob and Drew during circle time