Post Op Day 3

Today has been a busy day, to say the least. It started with me waking up to Nicholas having had several "lines" removed overnight. (I guess sleeping on a hard bench-like cubby in the corner of the room is good for me, I've been sleeping like a baby, haha.) When I opened my eyes he only had his left and right side peripheral lines, which are regular old IV lines which they take blood for lab work and if they need to give IV medication. He still has the two chest drainage tubes (which are by far the most uncomfortable things), and his pacing wires coming out of his belly. 

During rounds, the doctors and nurses discussed the plan for the day, just like every day before. Much to my surprise, they suggested that today the goal was to transfer to the step down unit in another wing of the hospital. They said that it would be dependent on the echo, which is the first one Nicholas has had since surgery, and if everything looked good, he would move out of Cardiac ICU. They also wanted to see him drinking more fluids, get out of bed and sit in a chair, and go for a walk around the unit. His heart meds were all weaned by the end of the night shift, but they decided to add a medication to help lower his blood pressure. His blood pressure is within the normal range, but is slightly higher than they'd like to see, so it will probably be temporary, we hope. 

Nicholas got out of bed twice to use the restroom and instead of going to bed, he sat in the chair for breakfast. He ate a little bit better than yesterday, and Physical Therapy came in and tested his abilities and gave him some strength exercises to do. Shortly after, Occupational Therapy came in and asked him to show her that he could take his socks on and off, and that he could track her fingers with his fingers, things like that. She said she would like him doing as many of his daily activities by himself as possible, brushing teeth, combing hair, pulling his pants up and down in the bathroom. She said it is likely that he'll need some help because the chest tubes make range of motion very uncomfortable, but to try to have him do more and more. 

We took our first stroll around the Cardiac ICU today. It was really hard on my boy, but he did so great. He was pretty pooped when we got back, but he is getting better each day. I am simply amazed how good he looks. We have even seen a few little smiles here and there. 

The echo was later in the afternoon. We watched as the images popped up on the screen. After all these years watching so many echos, I have been able to semi-understand what we are looking at. It was amazing to see his new anatomy. It was clear to me that the ventricle we were looking at was squeezing differently than it has been for the past year, since the last PA band was placed. Dr. Marx came by just as the images were done being captured, and he asked for 3-D images as well. So the echo tech took a few more pictures and Dr. Marx said that it looks perfect. I have such a feeling of relief, knowing that the echo looks as good as can be, and the proof is in the pudding--Nicholas looks as good as can be, as well. 

An hour or so later, we got news that we were being transferred to the step down cardiac unit. The ICU has 32 beds, which is a huge wing; the step down has 44 beds, and is even bigger. We got settled into our new room and it seemed like we had the double-bed room to ourselves. Nicholas wanted to try to play a video game, but was sorely disappointed that they didn't have any games he liked or knew how to play. He tried a soccer game, but it just didn't do much for him. Next thing you know, we are getting a roommate. They try to match patients with kids the same age and gender. Our roommate is a little boy in diapers from China. I'm guessing he's about 4. His parents are both here and none of them speak english. It is somewhat of a distraction listening to their language as they converse, but it also reaffirms the fact that coming to Boston Children's is what you do when you want the best care in the United States - the world, even - for your child.

We took another 2 walks tonight, and have settled in nicely in our new room. I feel so much at peace being here. I feel like we made the right choice coming here and I have no regrets. Lorenzo was talking on the phone tonight and he made the comment that maybe our bad experience at Stanford last year was part of God's plan to get us here for our rare, complex Double Switch operation. I am in disbelief at how seamless this has gone so far. Nicholas is not out of the woods yet, but he is doing so well I wouldn't believe it if I didn't see it with my own eyes.  

I also have to say thanks to all those who have been praying for our boy. I think we have an army of prayer warriors out there and there is no doubt that it has had an effect on the way this has gone. So, from both Lorenzo and me - thank you.