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 1^st 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.

Family

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!

Friends

We are feeling truly blessed right now! Caden had a good night's sleep last night at Ronald McDonald House. He didn't need any pain meds during the night but definitely needed some first thing this morning. He's just on regular children's Tylenol to manage the pain. It's crazy how good he feels considering he had open heart surgery four days ago!

We had a nice slow start to our morning and looked forward to our friends arriving to visit. Ryan, Suzanne and their kids, Brayden, Ellie and Olivia all came to spend the day with us. They brought lunch for us to eat together before we had to take Caden to the hospital for an echo.

 Caden holding the rose brought by our friends

Caden and "Auntie" Suzy

Like I mentioned in the post about discharge, we had to take Caden to the ER at Stanford today in order to have an echo done. The cardiology attending had arranged for them to give us a room and have an echo done as well as for a cardiology fellow to come do an exam. We got there a little after 12:30 and ended up being there about three hours! Nothing ever seems to go as planned! But, the doctors and nurses were all really nice. The cardiology fellow did his exam and said Caden looked good. But we had to wait a long time in order for them to do the echo. Then we had to wait for the official results and finally get the discharge put through to leave the ER.

In the echo they were mainly checking the fluid around Caden's heart. After heart surgery it is very common for there to be fluid build-up around the heart. And usually over time, this fluid is re-absorbed into the body. But they wanted to make sure that the fluid wasn't increasing because if it does, it could restrict the heart's ability to function fully. Since they wanted to be able to discharge us yesterday, and the clinic isn't open on the weekend, this was their solution.

Eating his popsicle in the ER while waiting for the echo

Greg and Caden hanging out waiting...

I ended up leaving to go back and meet up with our friends after a couple hours of waiting. Greg stayed with Caden and waited for the echo to be done. Shortly after I left, the echo tech came in and finished the echo but of course he couldn't give Greg any information. Then the cardiology fellow said unofficially everything looked good but they needed to get the official report before they could discharge. When that came back, they said everything looked good and we were set for the follow up in the clinic with the cardiology attending next Thursday morning.

Just before Greg and Caden got back from the ER, we had some more friend stop by to visit. Our friend Stacey and her fiancee Ron came by to visit for a little while. Ron is actually one of the nurses in the CVICU and came to visit us during his break on Caden's first night after surgery.

Ron with us the night of Caden's surgery

After Greg and Caden got back, we celebrated Caden with cake and ice cream that Ryan and Suzanne bought for the occasion. It was so fun to see him chowing down on the cake and getting it all over his face. Thank you for the cake!

 "Can I eat it yet?"

Chowing down on his celebratory cake!

As soon as we were done eating cake, Stacey and Ron needed to leave. So we quickly said our goodbyes and got pictures with them before they left. We really appreciate them taking the time to come visit us.

 Ron and Stacey with Caden  :)

 Suzanne, Olivia, Greg, Me, Caden, Stacey and Ellie

Then the rest of us were hungry again for dinner, so we walked across the street from RMH to Chipotle in the Stanford Shopping Center. It was the first time I've really been away from the hospital or a hotel in the last week and it was wonderful. When we were done there, we walked back to RMH and had to say goodbye to our dear friends. Thank you so much for coming to spend the day with us. We had such a good time celebrating Caden's surgery success with you! We're just sorry we lost so much time in the middle of the day due to the visit to the ER. :( We are so grateful for your love, support and prayers.

Ryan, Suzanne, Olivia, Caden, Ellie and Brayden

Just as they were leaving, another wonderful friend came to visit. Julia was Caden's first physical therapist and started working with him when he was only a few months old. Over the years we became good friends and it means so much to me that she took the time out of her busy schedule to come over and visit. She also was a prayer warrior for us and Caden during this time in our lives. Thank you so much Julia!

 Julia holding Caden

All that made for a very busy day with not much rest for Caden so he was pretty exhausted tonight as he got ready for bed. I'm praying he has another good night's sleep. Please continue to keep us in your prayers as we try to help him stay calm and not overdo things. He's having a hard time being calm. He is trying to run around and be a “typical” four-year-old. He keeps trying to raise his arms above his head, and trying to throw balls with both hands over his head. Things he shouldn't be doing. I guess I should be grateful he's feeling well enough to do that. But I am so worried about him hurting himself or causing further injury. The next 6 weeks are going to be very stressful in terms of having him take it easy and give his body a rest.

Incision

We are so appreciative to our friends, Todd & Christen, who drove up from Visalia and spent the day with us today. They ended up being the only visitors Caden had while in the hospital. We had no idea he would be discharged so fast! We were told to anticipate a 7-day hospitalization as the best case scenario. And, in the past, Caden has never been a “best case scenario” kind of kid! So I figured we would be more than 7 days, certainly not less. That thought never crossed my mind!

Christen and Todd with Caden

But Caden had a really fun time with Christen and was super silly with her before we managed to get out of the hospital. And he had fun with her later at the Ronald McDonald House after he had a nap. They brought some fun toys for him and I know he will enjoy them! And, Greg and Todd got to go on a bike ride which always makes Greg happy. So it all worked out perfectly! Thank you so much for taking the time out of your busy schedules to visit us. That means a lot!

We are so grateful to have a room at RMH! It gives us a feeling of stability for the next week. The only unfortunate thing about our room here is that we don't have a bathtub. We only have a shower and Caden can't be in a shower because of his incision. If we had a bathtub we could have kept the water level very low and had Caden sit in the water. But Greg managed to turn the water toward one side of the shower and had Caden stand in the other. Then he used a soapy wet towel to clean Caden off. When he got out I dried him off, removed the bandages off the sternal incision, and took pictures of the incision. They told us to take it off today so it could start to air out and heal. The bandages covering his chest tube and the pacer wires will stay in until tomorrow night. But I can't believe how great his incision looks even now! I think it looks better than before, so maybe it was a good thing he had another surgery... ;) He ended up getting a little plastic surgery as part of the deal! j/k

There's that cheesy smile!

I am so amazed at the body's ability to heal itself. Kids are so resilient because I am positive that if I had open heart surgery three days ago, I wouldn't be doing nearly as well as Caden! I'm pretty sure I would be whining and complaining about the pain or discomfort. But he is handling it so amazingly well. I am so proud of him! Such a rock star!

As a final note, I wanted to include the lyrics from one of Caden's favorite songs because we absolutely believe this to be true!

“My God Is So great!”

My God is so great, so strong and so mighty, there’s nothing my God cannot do.
My God is so great, so strong and so mighty, there’s nothing my God cannot do.
The mountains are his, the rivers are his, the stars are His handiwork, too.
My God is so great, so strong and so mighty, there’s nothing my God cannot do. (for you!)