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.