Thursday, May 9, 2013

Overdue Update!

I am so sorry for the very overdue update! We got home and I just kind of crashed emotionally, so to speak. I haven't been very productive in the last two weeks as I feel like I am still recovering from all the stress leading up to surgery, the surgery itself, and trying to keep Caden from doing too much now that he feels great!

But let me back up and let you know how things have been going since my last update. We drove home on Sunday and Monday, April 21/22. When we pulled into the driveway, we were welcomed by an incredible poster made for Caden by his amazing preschool teacher! She put band aids on the “broken” heart and poster of everyone who was praying for Caden. When she found out when we were going to be home, she worked with Greg's parents to get it put up along with balloons on the house and around the yard. What a welcome! Thank you so much Melissa!

Caden enjoyed some time with Grandma and Grandpa that evening before bed. And the boys were so excited to see each other again. It was so sweet, but at the same time, very stressful because Caden got so worked up, he was doing things he wasn't supposed to do with his restrictions. :(

Unfortunately we couldn't enjoy our homecoming too long because the next morning, on Tuesday, April 23, I had to drive Caden to Spokane to see his cardiologist there on April 24. The doctor at Stanford was very clear that he wanted Caden to be seen as soon as possible upon our arrival back home. So that meant driving 3 hours to Spokane to the cardiologist's office there. But I got to spend the night at my sister's house and see my parents also so that was nice.

That evening we celebrated my nephew, Rylan', 14th birthday, which was the next day. And my friend, Heidi came over to visit also. Caden loves her and even though he was really grumpy much of the time she was there, he was happy to see her. I am so glad I am able to see Heidi whenever I am in Spokane. I appreciate her friendship! Thank you for coming to visit us!

 Happy birthday Rylan!

 My sweet friend, Heidi!

The next morning at the cardiology office, the nurse did an EKG and took vitals. Then Dr. Burg did her exam and asked me a lot of questions. She really wanted to do an echo on that visit to check the fluid levels around Caden's heart since one hadn't been done since the day after his discharge from the hospital. There weren't any openings in the echo schedule, but she had them squeeze us in because she wasn't comfortable sending us back to Walla Walla without that information. 

I was more than happy for them to do the echo because it would give me peace of mind also. However, I knew that Caden would NOT be happy about it! He's had so many echos lately and some of them have been very long. He is overly sensitive right now due to his surgery and doesn't like being touched at all, let alone having a probe pushing firmly down on your chest, neck, and below the rib cage. I was definitely concerned as to how well he would cooperate and if they would be able to get the images they needed or not.

When the ultrasound tech came out to get us, she introduced herself and told me she remembered Caden from doing his echo last year. I told her he did not like echos at all and she really listened to me. She asked questions as to why he didn't like echos and tried to identify exactly what it was so that she could make it better for him. She wanted him to be comfortable with her and give him a positive experience. After talking to both of us, she let him pick out what movie he wanted to watch while she did the echo. Once the movie was in, she waited until the movie started (not just the opening credits) before touching him with the probe. I have to say that she was AWESOME! She told me she would just do a fluid and effusion check with this echo and they would do a complete echo another time. 

She was so gentle with Caden and was able to get all the images she needed without him complaining once! That is a pretty big accomplishment these days, especially right after surgery when everything is sore and tender! Thank you so much, Kim for taking the time to understand Caden's fears and working with me to give him a comfortable and positive experience.

After the echo we went back in to see Dr. Burg and she told us everything looked great and there was no fluid around Caden's heart at all. Yay! :) So right now the plan is for us to see her in Walla Walla on May 23 for a follow up. That is the day they come down here for their monthly clinic. I am really happy that things are going so well! What a huge relief and blessing to us!

We got home Wednesday afternoon, April 24 and get to be home for good now. Greg's parents left first thing Thursday morning to go back to their house and take care of all the things they had to do there. We are so grateful they were able to be here to take care of Kyler while we were gone. I really feel this was the best option for him to stay in his regular routine of school, piano lessons, swimming lessons, etc. It helped keep his life “normal” while we were gone. And, having both of his grandparent's complete attention was pretty nice. They doted on him and he loved every minute of it! 

Goodbye Grandma Mary & Grandpa Dan

Saturday, April 27 we went to church and our pastor made an announcement up front to the congregation about us and how well Caden was doing. What a blessing to be part of a church family who has been lifting us up in prayer during this time in our lives. During church Kyler brought me to tears. All on his own, he filled out a prayer request/praise card for Caden. I had to take a picture of it because it was so sweet! I love my boys so much and I am so glad to see Kyler praising God for Caden's smooth surgery and speedy recovery. 

We have until May 21 for Caden's restrictions for sternal precautions. This seems like a very long time away! But that means no contact sports, no monkey bars, no climbing, etc. And this includes riding a bike because if he falls it could be bad. But even though he can't ride his own bike right now, Greg was able to take him on a bike ride. All three boys went on a bike ride Saturday afternoon. Kyler rode his bike, and Greg pulled Caden in the bike trailer. I'm not sure we've used the trailer since we moved here, but it was sure nice to have it still! Caden was so happy to go on a bike ride and enjoy the beautiful day! 

On Sunday morning, Greg took Kyler to our church for his “marathon.” Our church is doing a kid's marathon which has the kids running almost 3 miles every Sunday for 9 weeks, so that by the end of the 9 weeks, they will have run a complete marathon – 26.2 miles. It is a fundraiser for our church building project and the kids are supposed to get sponsors to donate money. Some days Kyler has been more excited about doing this than others. But he is committed to it at this point, so he has to do it. On April 28, he was very excited to start running and took off FAST! The photographer captured a great shot of him running full speed ahead! Greg said he didn't maintain that for long and had a hard time completing the run because he was so tired. There are two more weeks left now before they are done.

Kyler is #12 right up front!

One of the biggest highlights of being home was having Caden's friend Brooke-Lynn come over to play. She is a friend from preschool and the kids love each other. It was so much fun to have her, her little brother, Carter, and their sweet mom, Jessica, come over for a few hours on April 30. Caden is really missing preschool right now and having a friend come over was just the thing he needed! And they brought him some wonderful, fun toys and activities to play with. Thank you guys! We love you!

Caden and Brooke-Lynn

Since then, we've pretty much been laying low. It has been challenging keeping Caden from doing all the things he's not supposed to be doing... He is feeling just fine and doesn't understand that his bones still need to heal from where they split his chest open. It doesn't matter how many times I try to explain it to him in different ways, it's just a hard concept. He has been in tears more than once because he can't ride his bike, or climb things, or go to the playground and play like normal.

I have had a hard time getting motivated to do much of anything. I don't know if it's because we don't have anywhere we need to be and that makes me lazy. Or if it's because I am still processing the emotional stress of Caden's open heart surgery. Either way, I am trying to be more productive. We have some very dear friends coming to visit us in June so I am using that as motivation to get some projects done around the house that I've been putting off. Primarily I am working to complete the refinishing of a bunk bed set I got last year. Everything is now sanded and I have one coat of stain on one side of everything. There is still lots more work to go, but I am going to get it done before our friends arrive!

Thank you all so much for your prayers for us and Caden as we continue to keep him from doing too much. He has less than two weeks left of his restrictions and we will be so happy when that is over! Then we will actually be able to enjoy our summer! :) I'm sorry I was so slow in posting an update but I just had a hard time sitting down at the computer to get it done after I got home. Thanks for checking in. We are so grateful for all the love, prayers and support we have received!

Thursday, April 18, 2013

Surgery Follow Up

This week has been surprisingly relaxing. My sister and I have been able to take it pretty easy and not feel rushed to do much of anything. Caden has had lots of quiet time watching DVD's to allow his body a chance to heal. When he's not watching DVD's, he is usually trying to overdo it and that makes me nervous! He also wants to take rides on the elevator at Ronald McDonald House just for the heck of it. Our room is on the 1st floor (Room C101), so we don't exactly need to take the elevator.

 Watching DVD's

 Riding the elevator with Auntie Cheryl :)

On Tuesday we went on a walk around the Stanford Shopping Center and enjoyed the beautiful flowers throughout. Then Caden started begging for pizza, so Cheryl and I took him to the same pizza place Greg and I took him to on the day before surgery. He enjoyed his dairy-free pizza once again!

 Caught in a happy mood!

 Enjoying the flowers

 Outside the pizza place

Chowing down on pizza

Wednesday we had nothing on the agenda so we decided to drive over to the coast in the afternoon. Tuesday night Caden didn't have a very good night's sleep so he was pretty tired on Wednesday. He fell asleep on the drive over to Half Moon Bay. We let him sleep for a little while in the car after we arrived, but I wanted him to be able to go to sleep at night so after about an hour, I opened his window and let the wind wake him up. He was extremely cranky and mad about being at the beach where it was so windy! 

It was an absolutely gorgeous sunny day, but it was very windy. There were some gorgeous flowers right next to the beach and along the bluff and we managed to get a few pictures. But Caden was literally screaming hysterically the entire time we were there! Cheryl tried to distract him by picking him up and carrying him out onto the sand, but he wanted nothing to do with that! You might not be able to tell in all the pictures, but he was one mad little boy! It was the combination of lack of sleep the night before, a short nap, and not liking the wind, which all contributed to his pleasant demeanor. 


You can't tell how mad he was in this picture!

By the time we got back to RMH, he was finally in a better mood and we managed to get a few pictures of him in front of the house and playing with the train in the lobby. But man, he was in a foul mood at the beach. It's too bad because that was only his second time at the beach and he could have enjoyed himself if he wasn't so mad. Oh well!

Playing with trains

Thankfully Wednesday night he had a much better night's sleep and this morning he was in a better mood. This morning, our friends Mario and Melissa and their kids, Rachel and Alex, stopped by for a few minutes. They live in Walla Walla and are in California for a work/vacation trip and we are so touched they took the time to visit us. Their kids had slight colds, so we didn't get a picture of all of them with Caden because we didn't want to share germs. But it was so nice to see them. 

Mario, Melissa, Alex & Rachel

Shortly after they left, Cheryl and I walked with Caden over to Lucile Packard Children's Hospital for Caden's surgery follow-up appointment in the heart center. I thought he was supposed to have an echo followed up by a visit with the cardiologist. But they told us when we got there it was just a visit with the doctor. That's just fine with me since Caden hates echos!

They took his vitals and then took us back to a room. First a cardiology fellow, Dr. Rachel Hopper, came in and asked a lot of questions about how Caden was doing, etc. After she did her assessment, she left the room and came back with Dr. David Axelrod a few minutes later. Dr. Axelrod was the attending on the CVICU almost the whole time Caden was there after surgery. Both he and Dr. Hopper told us how great Caden looked and how well he seemed to be doing. When I asked about when the stitches came out and who should do it, they said they would have the Surgical PA come in and take a look at them because they thought it was possible they could come out today. Normally they like to wait 10-14 days after surgery but they thought the incision looked really good and it was possible they could come out. 

 With Dr. Hopper

 Dr. Axelrod doing an exam

They told us to make sure to see our cardiologist, Dr. Burg, as soon as possible upon returning to Washington. But they said he didn't need to stick around here any longer and we could leave to go home! Woohoo! What great news! :) We plan to leave RMH tomorrow and spend a couple nights in Sacramento before we drive back to Walla Walla.

After they left, we waited for awhile for the Surgical PA to come in and decide whether or not the stitches could come out. He walked in the door, took one look at Caden and said, “I see Dr. Reddy's handiwork.” I guess the surgeons definitely do have their “signatures” on each patient! The PA hardly needed to look at the incision before he determined he would be happy to take the stitches out. He went out to get a suture kit and came back with a nurse to help hold Caden still.

As soon as I laid Caden down on the table, he started screaming about how he didn't want any pokes. He was completely irrational and wouldn't listen when I told him there wouldn't be any pokes. He screamed very loudly and for a LONG time. I held his arms down and the nurse held his legs still while the PA snipped the sutures and pulled them out. He said since the dermabond was still in place, he could take them out but he wouldn't have done that if the dermabond had come off. 

Can you say, "Angry!"

We were all very relieved when he was done with the removal. But then Cheryl and I had to clean off the betadine before we put Caden's shirt back on. Otherwise it would have stained it. Caden was NOT amused that we were doing that. He wanted to be left ALONE! I can't blame him for that. He is very tired of being messed with!

 He's pretty happy now that it's over

 Looks pretty good to me!

As we walked back to RMH, I decided I was very glad they were able to take the stitches out here. If Dr. Burg in Washington took them out, he would have associated the pain or trauma with her and I don't want that. This way, he associates all his pain and stress with LPCH and the doctors here. And we can leave them all behind when we go home. Hopefully we never have to come back here for any kind of procedure for Caden again. I am so glad for the care he received here, but I truly hope we are done and never have to come back!

All is well here and we look forward to beginning our journey home. I take my sister to the airport tomorrow morning for her flight home. Then I will spend the day at RMH while I wait for Greg's flight to come in Friday night. Once I pick him up, we will head straight to the Sacramento area where we will stay until Sunday afternoon. We hope to be home Monday evening. Then I head up to Spokane on Tuesday to see Caden's cardiologist first thing Wednesday morning. By Wednesday afternoon/evening we should be home for good! This is a week earlier than we ever thought was possible!!! God is so good and has provided for our every need.

Monday, April 15, 2013


Sunday was filled with visits from family. What a wonderful day for Caden. At 5 days post op, he was doing really well. He woke up coughing quite a bit due to the fluid around his heart. But after a couple hours of being up and moving around, the cough went away. I am not overly concerned because they did the echo on Saturday and said all was well and we didn't need to follow up until Thursday in clinic. If they had any concerns they told us they would have brought us back in sooner. In the meantime, we will try to do a better job propping him up at night while he sleeps to see if that helps.

After the cough went away, he was geared up and ready to go. He asked me to take him on a walk outside in the stroller. He still gets tired easily if he walks too much. But we went on a walk around RMH and along the sidewalk in both directions from RMH. It was a gorgeous day and nice to get out in the fresh air and sunshine!

In the afternoon, Greg's sister, Natalie, her husband, Bret, and their son, Brody, came for a visit. They brought a couple gifts for Caden, including the DVD, “Happy Feet” which he was thrilled about! Then we took them out to the play area in the back of RMH so Brody could work his energy out. Of course, it was hard to keep Caden calm! Both the boys ended up climbing up the rung ladder inside the small playhouse before we realized it. That is a definite NO-NO for Caden!!! After that, Greg picked him up and set him in the upstairs area and then pick him up to bring him down. We told him the doctors said he couldn't climb things like that for at least 6 weeks. He just doesn't understand how serious it is and how careful he needs to be. It is going to be a LONG 6 weeks! 


Uncle Bret, Auntie Natalie & Brody with Caden

 Brody peeking out the upstairs window

Both the boys upstairs

Caden looking out the downstairs window

He also rode the tricycle around for a bit, often with one of the adults helping push the back of it so he wouldn't work too hard. But he loved going on the wagon ride with his cousin. He and Brody had so much fun riding around in the wagon together. They also had fun blowing and playing with bubbles. And, of course, we had to take the obligatory picture with Ronald McDonald! We have a picture of Kyler with him just before he turned three years old. And now we have one with Caden. 

 Riding the tricycle

 Loving the wagon

 Brody and Caden
(not sure why Caden's making a Popeye face!)

 Greg blowing bubbles for Caden

Later in the day my sister, Cheryl, arrived. She flew into town earlier in the day and spent some time with a good friend of hers who lives nearby before joining us at RMH. It was so good to see her! Cheryl will spend this week with us, and flies home on Friday morning.

Auntie Cheryl

Greg flew back to Walla Walla this morning and will come back Friday night. He had to be at work this week. So it's really nice to have my sister here to spend time with me and hang out with Caden. It should be a relatively quiet week here as we don't have a lot on the agenda except Caden's follow up cardiology appointment on Thursday morning. So you probably won't hear too much from me in the next couple days unless there's something to report. Thanks for checking in!