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!)

Discharged!!!

Caden was discharged today! He was less than 72 hours post-op! I can still hardly believe it!!!!!!! This morning, Nurse Christina told us the primary goal was for him have a bowel movement today (he hadn't had one since Monday), and have an echo to make sure everything looked good with his heart and to make sure the baffle wasn't leaking.

The echo was taking place when we arrived this morning. It was really painful for Caden as they pushed the probe around trying to get different views of the heart. He was crying quite a bit and his blood pressure was going up so they ended up taking a break for a few minutes. During the time, the cardiologist doing the echo decided on another means of getting the image he wanted. He injected agitated saline into Caden's IV and they could watch the bubbles on the monitor as they entered the heart. From that he could tell if the bubbles stayed in the correct place or not, or if there was any leaking around the baffle. He said everything was perfect. It was pretty cool to watch that though. And it was a great solution to getting the imaging he wanted without torturing Caden for much longer. 

Having an echo

Once the echo was done, we waited for the doctors to round. They came by a little bit later and said they were ordering an enema to help him move things through and they wanted him up and walking. At that time, they ordered his arterial line and his IV's pulled out and said he didn't need to be monitored anymore. So all leads came off along with the pulse-ox sensor. Once we was free from wires, we put his pajamas on (he got brand new Angry Bird pj's just for the hospital) and had him start walking around the unit. He complained a little at first but then seemed to enjoy it.

The last of the arterial line!

Getting ready to walk

 Walking around the CVICU

After we brought him back to the room, he got back in bed and the nurse gave him the enema. Within two minutes he was ready to move it all on out. As soon as that was done, his attitude completely changed! He had been complaining about his tummy hurting for the last two days and we knew this was the reason why. But as soon as he got it out he was back to the little boy we know and love. He was being funny and silly and laughing with people. He was willing to talk to people and not just give them the stink-eye. It was so awesome to see. His nurse couldn't believe how different he was after that.

Being silly with Christen

Nurse Christina

Once we had those items of business taken care of, the doctors said we were good to go! That meant discharge!!! The cardiology fellow who did our final discharge told us Caden followed the textbook recovery process. That is the first time in Caden's entire life that he has done anything “by the book.” He is always the one to have something rare and unusual. It took a couple hours for the official order to be put into the computer but as soon as it was done, we loaded up our belongings into a wagon, settled Caden into a wheelchair and rolled on out of there. By 12:45 pm we were out the door! :-)

Getting ready to head out

And we are OUT!!!

To make our day even better, our social worker at the hospital was able to get us a room at the Ronald McDonald House. We have spent the last 5 nights at hotels and we are ready to have a little more stability in our lives. She told us the room was available right away and we could head on over. We had some friends come to visit us from Visalia and they were there when we were discharged. Greg and Todd had to go back to the hotel to check out and pack up our belongings. Christen stayed with me and helped me load everything up and take it downstairs. Once we were there, we waited for the shuttle to take us to RMH where Greg and Todd were going to meet us. 

Caden enjoyed the short ride to RMH and we all ate lunch together. As soon as we were done with that, he was ready for a nap. I don't think he had slept at all today and I'm sure his body is exhausted! For the past three days he hasn't been doing much. So I'm sure being up and walking around took a toll on him. Right now he is sleeping while I blog. Poor thing needs the rest!

Right now we will plan to stay at RMH for another week. We have to take Caden into the ER tomorrow to have an echo and quick check-up by one of the cardiologists there. They just want to make sure he is still doing well and adjusting to being outside the hospital. Then we have our official follow-up appointment with the cardiologist in the heart center at the hospital next Thursday. Then on Friday we will head over to Sacramento for the weekend before driving home.

I am so grateful for everyone's prayers and emotional support throughout this experience. We couldn't have done it without you. God is so good and has provided for our every need. I am still in shock that we are out of the hospital. Never in my wildest dreams did I expect our experience to go like this. Nothing with Caden has ever been easy when it comes to medical things so this is absolutely incredible! Thank you all for sticking with us through this journey. It means more than we can express in words.

Post Op Day 2

We got to the hospital a little later today because we had a hard time getting ourselves up and ready. But when we got there, Caden was in a really good mood. The child life specialist was there with him playing with him and talking to him about the new room he would move to in the other unit (assuming a bed opened up). He was smiling and happy and doing very well. The nurse told us he had a great night and slept well.

"Cheeeeese!"

The doctors and nurses want Caden to be more active, so we moved him into a chair beside his bed so he could sit up straighter and try out a new position. He wasn't impressed with the move and wanted to be back in the bed. But he ended up staying there for several hours and watched movies. I'm not sure how many times he's watched “Cars” and “Finding Nemo” in the past two days, but it's a LOT!

 Sitting in a chair for the first time after surgery

When the doctors finally rounded close to noon, there were just two of them and it was pretty casual. Caden is doing so well they didn't have much to say. They said they are treating him as if he was already in the step down unit in terms of care. He certainly doesn't need ICU status but there were still no beds available so he was staying where he was. They did tell us we were first on the list to move when something opened up. And they asked if he had been up on his feet at all yet. We told him he hadn't but that it would be hard due to the chest tube. They said they would get someone from surgery to come see if that could be pulled today or not. Other than that, there was nothing else they needed to do for us. That is so surreal considering after Caden's first surgery as a baby, they would spend up to half an hour rounding on him and it was usually with a much larger team of people!

Caden with Nurse "PB"

When I asked the cardiologist later in the day what the surgeons had decided about the chest tube, he said they wanted to make sure Caden was up and on his feet a little before they did it. He said sometimes the chest tube isn't draining much blood while the patient is lying down or sitting in a chair. But when they stand up, sometimes some will dump out. So the surgeons wanted him standing up a little at least before they pulled the tube. As soon as I found that out, Greg and the nurse and I all got Caden on his feet for a couple minutes although he was not amused about this! A couple cc's of blood came out, but not much. The nurse passed that information on to the cardiologist.

Standing for the first time since surgery

Around 3:00 pm the surgeon came by and said he was ready to pull the chest tube and the pacer wires. He had the nurse give Caden a dose of morphine to help take the edge off the pain when he did that. He came back about 10 minutes later and pulled them all out. It was horrible for me to watch. I don't deal well with that kind of thing anyway, but the hardest part for me was listening to Caden scream. He kept pleading with the surgeon to stop. “That hurts!” “Please stop!” “Don't do that anymore!” It just broke my heart to hear him crying like that. But as soon as the surgeon took his hands off him, Caden calmed down really fast and seemed fine. He was pretty quiet for awhile after that. He just wanted to watch “Clifford” and be left alone.

 Chest tube and pacer wires are OUT!

Before surgery, I told Caden he would be able to have a wagon ride in the hospital when he was feeling up to it. So, I asked him if he was ready to take the ride. He smiled and nodded so I asked the nurse if we could do that. She called and had a wagon brought to the room and got everything ready to go. But she has two patients to keep an eye on and there was nobody available to watch her other patient while we went out with the wagon. So we had to stay in the corridor right outside Caden's room. That way she could stand in the doorway and keep an eye on both patients at the same time. Greg pulled the wagon and I followed along with the IV pole. But after we had gone down and back one time Caden started crying and said he was done. We think the movement of being in the wagon made it hard for him to steady himself since it hurts to use his core muscles. Poor baby! :( So we took him back into his room and moved him back to bed. At least he can say he had his wagon ride.

As the day went on it became clear they wouldn't be moving Caden to the step down unit today either. But the doctors told us during rounds that if that continued to be the case, they would just end up discharging him straight from the CVICU. So I guess we will see what happens with that.

After Greg and I ate dinner, we were able to let Kyler and Caden FaceTime. They haven't seen each other since Monday which is when they last did FaceTime. They didn't talk to each other long but it was really fun for both of them. Caden told Kyler about his wagon ride and it seemed to be a good memory for him. And he told him about watching all the movies. But he didn't mention anything about the surgery or having any pain which I thought was interesting. Kyler told Caden he had been seeing stories of him on Facebook which I thought was pretty funny. But Grandma has been showing Kyler the pictures and other posts I've made about Caden so he would know how he was doing. I'm glad they got to talk. I know they miss each other!

Talk to Kyler on FaceTime

Right before the end of the shift, we said goodbye to Nurse Amy, Caden's primary nurse during the 5 weeks he spent in CVICU as a baby. It was good to see her again and we had to get pictures with her to show Caden later on. We have pictures of her holding Caden as a baby and even though she wasn't holding him this time around, it is fun to see how much he has changed in the last four years even though she looks just the same! ;)

Good to see you Amy!

After shift change we went back into Caden's room and he was completely sacked out! I guess he was exhausted from his day. We sat around for a little while and finally decided we would take off since he was asleep anyway. So we packed up and whispered our goodbyes to him and started to walk out and then he woke up! We stayed around for a few minutes as we helped him get settled in with the new night nurse. Then we told him good night and we would see him in the morning. When we left he was watching “Finding Nemo” for the 361^st time! We will see what tomorrow holds in terms of Caden. But he is doing so incredibly amazing and I am so proud of him!

Sacked out!

Post Op Day 1

I cannot believe how amazing Caden is doing! Today was a great day in so many ways. I want to document the day more for us than anything. But feel free to join us in our journey! :)

Greg and I didn't leave the hospital until after midnight and we were really tired. We kept waiting to see if they would extubate Caden while we were there. But it was taking too long and we were exhausted. So we left and asked Nurse Soo, his night nurse to call us when it was done just to let us know how everything went. She agreed and we went back to the hotel, climbed in bed and practically passed out! We never heard anything until my alarm went off the next morning.

Nurse Soo tried to call us twice about 15 minutes apart but didn't reach us because neither of us heard my phone ring. But Caden was extubated just before 1:00 am and put on nasal cannula oxygen. We called the day nurse, Kim, at 7:30 am to ask how Caden was doing. She told us he was off all oxygen at that point and doing great that way. But he was extremely cranky and had been demanding a lollipop! I laughed because I knew why he was demanding the lollipop. A few days before surgery a friend gave him a lollipop and I told him he had to wait to eat it until after surgery when he was feeling better. So, now that he had that tube out of his throat, he thought it was time for his lollipop! I told her we would bring him one.

We ate breakfast and got to the hospital around 9:00 am. Caden was VERY grumpy when we got there and was crying a lot. He was squirming all over the place and trying to take his arterial line out of his right arm. He was complaining the central line in his neck hurt, etc. Interestingly enough, most of his complaints had nothing to do with the sternal incision! They have more to do with the IV's and lines coming out of him. And, he already had his catheter removed, as well as his temperature probe before we came in so he didn't have as many lines so there were less things to whine about.

Caden was extremely cranky in general and nothing really made him happy. But he wanted that lollipop so he started in on it and that helped. However, he was still super tired and groggy and he kept crying and falling asleep. But if we tried to take the lollipop and set it down, he would start crying again. It was very sad. :( We also ordered some breakfast for him and he was adamant about getting a pancake. Greg ordered a dairy-free pancake along with some applesauce. Caden was so funny sitting there eating his pancake. It took him a good part of the day, but he ate most of it and it was a pretty large pancake for him, especially right after surgery. He also ate a few goldfish crackers and drank a whole cup of water in a matter of seconds! I guess he was thirsty, but I can't blame him for that! I would be too after having an endotrachial tube down my throat!

 Sucking on his precious lollipop!

Chowing down on a pancake

A little while after we came in this morning, Nurse Amy came to check on us. She was Caden's primary nurse when he was a baby and we were in the CVICU for so long. She was his nurse the day he coded and we give her credit for saving his life with her fast response. We had requested her for today but they didn't schedule her with us. It all worked out well though because we loved Nurse Kim. But we were so glad to see Nurse Amy and catch up with her briefly.  And hopefully we'll see her again tomorrow.

 Caden was not in the mood for a picture!

The doctors finally rounded on Caden around 11:30 am. At that time, they said he was doing fantastic and he was ready to move to 3 West, their cardiac step-down unit. I about went into shock when they said that! Just the fact that it was even being discussed was so surreal to me. They said it depended on bed space on that unit, but they said there was no real need for him to be in ICU anymore. They said his central line could come out today, his chest tube would likely come out tomorrow, and his arterial line would come out today if he moved to 3 West, but if he stayed in ICU, they would keep it until tomorrow so they could draw their labs from it and avoid poking him again. That only leaves one other IV in his arm for any potential medications that aren't given orally! He was also taken off the last IV pain med and orders were given for Tylenol PRN (as needed).

In one of his happier moments (that is supposed to be a smile!)
Holding his stuffed leopards from home

Thankfully Caden took a couple hour nap that started before the doctors rounded. He was so completely exhausted and his body needs the sleep in order to heal itself. And you could just tell from his attitude how tired he really was. When he woke up he was happy for a little while and seemed to be feeling pretty good. In fact, he said, "Can we go to the park as soon as I get dressed?" Of course, when we told him he couldn't go to the park today that was followed by a lot of crying and whining. And throughout the day he kept telling us he wanted to go home. And asking us when we were going to leave to go home. That part is really hard because he just doesn't understand that he can't leave the hospital yet. :( Believe me, I wish he could!

After awhile Caden was really agitated and we couldn't calm him down. We had a child life specialist in the room trying to play with him and distract him with toys. We tried every movie or TV show we could find. He just kept crying and crying and crying. Also during that time, the nurse was ready to take the central line out of his neck. This was not a fun process for any of us. There was a lot of tape and sutures holding it in place and it took several of us working together to get it removed. The child life specialist was trying to distract with toys. Greg was holding his iPad with Thomas the Train playing and was helping hold Caden's head still. I was holding Caden's arms down so he wouldn't grab the nurse's hands. And Nurse Kim was pulling off the tape and cutting the sutures and trying to pull everything out. I felt very bad for the mother/baby in the other part of the room we were in. Caden was screaming so loud and for so long! In fact, the nurse wasn't able to get all the sutures out and they will have to get them another time when he is feeling a little better. But at least the line is out and he doesn't have that pulling on him anymore so that is great news!

Child life specialist, Allison, trying to distract

Because he was agitated for so long, Nurse Kim ended up giving him some morphine to help him rest. He got a nice good long nap at that point which was good. His little body needed it! While he was sleeping we got the official word that we wouldn't be leaving CVICU today. They said there were no beds on 3 West and there were two other kids ahead of Caden. So we will wait. But it still completely blows my mind that there was even a remote possibility that he could be out of the ICU less than 24 hours after surgery! This is just so completely different than our experience after his surgery as a baby when Caden spent 5 weeks in CVICU! Of course it is a wonderful thing, but still hard to wrap my mind around!

NOT a happy camper!

 Morphine-induced sleep

He woke up from that rest in a much better mood. Even though he was still somewhat grumpy, he was more cooperative and didn't cry nearly so much. It was close to shift change and I left the room as our night shift nurse, Soo, came back on duty. It's nice for Caden to see the same faces again since he's already in an unfamiliar place.

 Goodbye Nurse Kim

 Hello Nurse Soo!

Soo told us after the extubated last night that Caden was really agitated for awhile and he kept trying to pull out his arterial line. She said they watched the movie, Cars, over and over again while she was trying to keep him distracted. And he kept demanding his lollipop. I think it was a long night for her and I feel bad.

I think her shift tonight started off better because Caden was in a better mood. He was complaining about his tummy hurting so we were working on managing that. But otherwise he was laughing and smiling more and just in a better mood overall. In fact, he was also sitting up in bed eating goldfish crackers and watching, “Finding Nemo” on TV (I have a video of this but I can't get it to upload...). It is so amazing to me that he can sit up like barely more than 24 hours after having open heart surgery! And the fact that he is actually eating is another incredible thing! We have struggled with food issues for so long and I was so worried about him regressing after surgery. But he is doing very well and we are happy.

We left the hospital around 9:30 tonight and I need to get to bed so we can be ready for another day at the hospital tomorrow. But hopefully we will be moving to 3 West and out of ICU! :)

Thank you for your prayers! God is so good and we are so grateful for all the love and support we have received through this challenging ordeal.