Thursday, July 31, 2008
Dan skillfully crumpled each paper into a uniformly sized ball. We decided they would mix better than if we just folded them.
After mixing the tickets to assure randomness, Drew reached into the vase to pull out each ticket.
And the winners are:
Katie & Andrew Scott - $100 Mikuni gift card
Paula Lawrence - $100 gift certificate to Center Court with C Webb
Gina & Gary Lambeth - $100 gift certificate to Ruth's Chris Steak House
Erick & Julie Soderlund - $100 gift certificate to Waterboy
Vanessa Whang - Brunch for two at Piatti
Laura Kronbetter - personalized baby blanket & booties
Paul & Kathleen DiBlasio - $35 Mary Kay gift certificate
Congratulations to all the winners! Valerie will be mailing your prizes to you shortly! Thank you to everyone who purchased a ticket or donated a prize. And a big giant thank you to Valerie for coming up with this idea and organizing the whole thing. Thank you for all of your help!
Wednesday, July 30, 2008
This morning we drew the winners for the raffle that Valerie put together for our family. We raised almost $2000! Thank you to everyone who contributed! We will use the money towards our hospital bills, which are still being sorted out with the insurance company. I will post the winners later today!
Monday, July 28, 2008
Yesterday we decided to go to the beach. And I was so excited because my brother and sister came with us too! They're young and like to sleep in so I was surprised when they said they would come with us when we woke them up at 9:30. But they are the best auntie and uncle ever! We had so much fun at the beach and made some great memories together. The weather was perfect, a little breezy and not too hot and the water was warm! It took a little while for the kids to warm up to going in the ocean, but once they did they were unstoppable! We played in the sand, ate some snacks, buried our feet and watched a seal that swam up out of the ocean and onto the beach. It was hard to pick only a few photos from our fantastic day, but here are some of my favorites.
Thursday, July 24, 2008
Go early when they're still tired
Invest in a DVD player for your car. The hours of silence are worth whatever it costs.
Bring lots of snacks (we had breakfast bars, bagels with cream cheese, bacon, PB & J, grapes, goldfish crackers & cheese sticks)
Expect unexpected stops for bathroom breaks/diaper changes
We made a quick visit with Jamie and her adorable baby, Ashley, when we first got into town. Then it was over to Grandma's house where we played with Auntie! When Grandma and Grandpa got home from work we played more, ate dinner, went on a walk and took baths. Now the angel babies are asleep in the same room. They were even good at bed time! All this goodness makes me wonder what's in store for tomorrow!
Here's some pictures from our visit with Baby Ashley:
Tuesday, July 22, 2008
Anyway, we've been dealing with home life really well. This morning Drew had a follow up appointment with Dr. Mainwaring (everything looks great). Since we were at Sutter we visited another heart family who is on their own roller coaster with their beautiful 3 year old daughter. And the emotions came flooding back. My heart breaks for this family. There is nothing horribly wrong with their daughter, but it's the highs and lows that drive you crazy. She had a great morning on Saturday, walking a lap around the floor. That night she was in septic shock. Monday she was responding well to the antibiotics, talking and spending more time awake. Monday night she desatted and they had to double her oxygen to 4 liters and put in another chest tube. So I've been upset. For the first time since we've been home, I've been crying. What is wrong with me? I don't cry when it's my own child, but I can feel the pain of the mother of this other little girl. I'd like to think that I'm just a compassionate person, that I care about this other family. But I think some of it is that I see my family in her family. I recognize their pain because it is our pain. I hear her daughter's cries, and I hear Drew crying.
I don't know exactly where I'm going with this. I guess I'm just sharing this experience with the internet. But for those of you who are not familiar with this world of heart defects and heart surgery, just know that for most of us, it is not over after our kids have their surgery. There is no "last surgery." The doctors do what they can to give our kids a chance at life, but the reality is that most of them will need more interventions, more surgeries, and we don't know when. So we all do our best to live life to the fullest, but somewhere deep inside we live in fear of when that day might come.
OK, so I don't want to end the post on that cheery note, so I'll share some good news too. Today after our visit to the hospital I took Drew to the zoo. And it was the very first time that I didn't bring the stroller with me. Because he walked by himself the whole time we were at the zoo! He was running between exhibits checking out all the animals. He did ask me to carry him a couple of times, but this is such a huge increase in his energy and exercise capacity! Yay Drew!
Sunday, July 20, 2008
Dan very graciously stayed with the kids while I was gone, even though they both had colds and he had a fever that got as high as 102.6! My poor sick husband! He is the best! Luckily he feels much better today. I got home this morning around 10:30 and it was right back to reading stories and folding laundry. It was a wonderful weekend, but I am glad to be back at home with my family. See you girls in a couple of years!
Thursday, July 17, 2008
To hear the music for the slide show click play and then click the x to minimize the video.
Wednesday, July 16, 2008
However, tonight I'm here to talk to you about India. That's right, India. Here's a little story: Last night Andrea was collecting some money from Dan for dinner. That's because Dan is the one who works and makes the money. ANYway, there was an extra three dollars. Drew said, "is that for me?" and Andrea said, "no, what would you do with money?" Drew said, "give it to the kids." His vacation bible school class is sending money to orphans in India. So of course that's terribly sweet and Andrea gave him the money at which point Drew said, "that's not money. That's DOLLARS!" Adorable.
The laptop is getting hot and it may be clear by now that I have nothing to say and that it's probably a bad idea that Andrea gave me the computer when she was logged in to her blog. Good day to all.
Monday, July 14, 2008
Dan and Ava had to stay home from church because on Saturday Ava came down with a fever. It got up to about 102.5 but once she had motrin or tylenol she was acting pretty normal. It was only when she was really hot that she was cuddly (clingy) and took some extra naps. Her fever continued on Sunday but so far today it hasn't been back. But, I took both kids to the doctor today anyway. Drew is sounding congested to me and Ava was still acting pretty cranky and I thought I might as well have them checked out. Especially since we were warned to take immediate action if Drew gets a fever.
So I took them both to see Dr. Bullen and of course as soon as we got to the doctor's office they were both happy and playing and full of energy. I guess nothing makes them feel miraculously better like having me drive thirty minutes in traffic to the doctor and shelling out $40 for a copay does. Ava did have some spots in her throat which the doctor cultured and tested negative for strep. He thinks she's at the end of her illness. Drew had nothing wrong with him, but he said it could be the beginning of a cold and to do normal cold treatments--fluids, moist air, etc. If he does develop a fever, since we know Ava just had one we can watch him carefully. But we were warned to bring him in if anything else is going on. His puffiness is better, but I can still see some around his eyes. And his veins on his stomach and chest are very prominent. At cardiology the doctor said that could be caused by a clot somewhere, but that it wasn't something to worry about. But the pediatrician said today to keep an eye on it and let him know if it gets worse.
This morning Drew started a week of vacation Bible school. He had a lot of fun and his two buddies, Jacob & Eben, are in his class. While he was there I headed back to the gym for the first time in two months! I hope he can attend the rest of the week, but I guess we'll just have to wait and see...
Friday, July 11, 2008
In other news, Drew has been taking his lasix and aldactone only once a day since Wednesday and he is looking kind of puffy. We gave him his meds this morning and if he doesn't start looking better by this afternoon I think I may call the cardiologist.
Wednesday, July 9, 2008
Dr. Parrish said he looks great and we talked a little about our time at Stanford. He was very impressed by Drew’s increased exercise capacity. Dr. Parrish decided to wait on an echo & EKG until the next appointment to ease him back in after his lengthy hospital experience (see why I love him?). The next appointment is in three weeks. We changed the lasix and aldactone to only once a day and have an x-ray ordered for next week to check the effusions. If his lungs look good he can probably stop the diuretics altogether. We still need to wait on swimming, probably only another week or so, until all his scabs are completely gone. We don’t have to do dressing changes anymore either. All in all it was a very good appointment!
Monday, July 7, 2008
I got the house a little more organized this afternoon. I know it sounds crazy, but I have to go through all of our closets to make room for the toys and games and books we got. Today Linda came over to distract the kids while I got some work done, and I was able to get a good chunk done in Drew's room. Next on the list is Ava's room. Then our room. Then the office. And on and on.
This weekend we had some good family time. Saturday we went on a walk to the river. Drew rode his bike the whole way there and back. It is about a mile each way and he has never been able to do this before. I was so proud of him! It is clear that his surgery was a success and that he is stronger than ever! The kids enjoyed throwing rocks in the river and we had a little picnic lunch. When we got home Dan built a giant slot car track for Drew to play with and they had so much fun together. I think Dan likes it as much as Drew does. We did some chores around the house and had a yummy dinner that Valerie brought us.
Sunday we went back to church as a family. Both kids love church and were so excited to go back! We were welcomed home by lots of friends and we thanked God for bringing us all home safely, although I have to admit, His timing was a little different than ours. ;) Later that afternoon Ava attended a princess birthday party. She had a good time but was the only one who refused to wear her princess dress. She did wear a crown though and looked very cute.
Sorry I haven't posted for a while, apparently our internet doesn't work when it's hot. And it's really HOT! This morning it was already 80 degrees at 9:30 and the high today was 105! We had to beat the heat this afternoon by playing in the whale pool! Hopefully it will cool off and we can resume our normal internet activities.
Friday, July 4, 2008
Thursday, July 3, 2008
The CT itself went well this morning. The cardiac anesthesia nurse said it was the smoothest CT she's done in a long time. Drew really did not like being in the PACU and lost it a little when they wanted to put the pulse ox on him, something he has done with no problem for weeks. He cried until he fell asleep on me and then they gave him some IV versed through his handy picc line to keep him asleep until we got into the CT room. Oh, here's something for you Kate, since you were wondering why anesthesiologists get paid so much. I was trying to convince her to try to let Drew do the CT with no sedation and she explained that they needed a picture with a breath hold, which requires him to be in control of his breathing and not asleep from benadryl. So I asked how she does that if he's sedated and she replied nonchalantly "I give him a medication to make him stop breathing and then I am in control of it." That's why they get paid the big bucks, to stop you from breathing but keep you alive.
Drew woke up from the anesthesia around 9 am when the surgical team came in and looked at his wound. They said it looked good and we didn't need to go to clinic. Which sounded great until I remembered that we need someone to take the PICC line out if the CT looked ok. So it was back up to 3W to talk to our NP Kiersten who took care of us getting back into clinic. Drew played in the playroom (hopefully for the last time!) until 12 and then we headed back to clinic. Our appointment was at 12:30, we didn't see anyone until 1:30, and we didn't leave until 3:00! But even though it was slow in coming, it was all good news!
The results of the CT today show that the abscess is completely gone! Praise God! Drew still has some effusions, so we will continue on the lasix and aldactone for that. He has switched to oral linezolid three times a day for the next two weeks and we will follow up with our cardiologist next week. We were warned to take any fevers very seriously though for the next month and head to the emergency room if it were to happen in the evening or on a weekend.
We were so excited to come home, we jumped in the car and headed right back to Sacramento. We left Palo Alto at 4:30 and didn't get home until 8:00. Waiting for us was our wonderful life group! Our furniture has all been replaced, the house looked clean, the fridge was stocked and our friends made a big welcome home banner for Drew. And they unloaded our car packed to the top with our stuff! Valerie was here too with a giant pack of fireworks that Drew can't wait to open! Thank you everyone!
Our little children are tucked into their beds and we can't wait to sleep in our OWN bed tonight! I have some more thoughts to post on surgery and the kindness of others as well as a lot of THANK YOUs, so check back soon for those. In the meantime, just know that we feel so blessed. Thank you!
Wednesday, July 2, 2008
This morning I talked with the radiology people about Drew's CT tomorrow. We have to be there at 6:15 am! And we have to check out of the hotel by 11. So, we've got to figure out how we're going to get all of that done. The rules are no food after midnight, clear liquids til 4:30 am, then nothing til after the CT. They plan on putting Drew out, then starting a "big IV," injecting the contrast and starting the scan. I hope it all goes well, I'm sure that it will, but it seems like it's a bigger deal than I thought it was. I'm mostly concerned about his mental state, I don't know how he'll react to going back to the hospital for a procedure.
Today we are going to spend more time at Grandma's house and maybe visit the duck pond. Hopefully the next post will be letting you know that we're on our way home!
Tuesday, July 1, 2008
Sunday was spent having a yummy breakfast with my parents before they headed home to Southern California, then visiting with Grandma Kathy at her house. Drew was so happy to be there playing with her cars and dinosaurs and watching videos. Our friends Andrew & Katie came by after the As-Giants game and we had pizza with them and their sweet baby, Chloe. The kids were content to push buttons on the video games there, even though we didn't give them any quarters to make the games actually work. Then it was back to the hotel for baths and medicine and bed.
Monday we all got up and got ready to go do "something fun." Our idea was to take them to the Palo Alto Children's Museum and Zoo, but we didn't mention it in case it was closed. It was a good thing, because it is closed on Mondays. We went to the park instead and watched some diggers doing construction on a nearby lot. Afterwards we took Drew to the hospital for his wound check, which took about one minute after 45 minutes of waiting. The PA said it looks great, but to continue keeping it covered. Then we dropped off a gift for baby Giovanni who has been at the hospital for more than two months and needs to stay until after his second surgery in August. We had lunch at the cafeteria, then brought Ava back to the hotel for her nap and Dan was able to get some work done. My friend Liz and her two kids came to visit all the way from Sacramento and we went for a walk to a nearby park and let the kids play for a while and we visited. She brought us a delicious dinner and it was so nice to eat some real food since we've been having so much restaurant food lately.
Today we are going to try the zoo again and then my friend Julie is coming to visit and we plan to have a mini spa day. I can't wait! I'll try to be better about taking pictures, but here are a few I took in the last few days.