CV-ICU Day 8, March 28, 2017

The team made rounds with us this morning. They think his LV is performing well enough that we don't need another echo today. They said the pacer wires can come out of his belly but first they want a baseline EKG to refer back to once Nick goes home and gets back to his normal routine. They said they think he looks great and that when we go home we will need to be on the lookout for minor changes in his activity level that might indicate his heart is struggling. 

Sometime later in the morning the EKG guy came in and hooked Nicholas up to all the slimy pads and wires. The EKG is probably the best cardiac test in terms of no pain or discomfort; even the little slimy stickers peel off without hurting.

We heard several times that we would be getting transferred out of CV-ICU today but each time someone came around they didn't have an answer as far as when the move to the step-down unit would occur. We played games, drew pictures, listened to The Beatles, and put a Lego together. We took a few laps around the unit and then we went and did a lap around the entire 2nd floor. 

The psychiatrist came back in at around 11:30 and said that she would like to spend some time talking to Nicholas, and she said Zo and I could stay or leave. Yesterday, Nick had told me he did not want to talk to anyone and was pretty upset that I thought it was a good idea. So today when she came in and said we could stay, we decided that was better for Nick to feel comfortable. She played a game with him to help identify how he was feeling and I was surprised that she was able to get him to open up. She said he is feeling the way most 10 year old kids would feel under these circumstances, and that having a support group of other kids in similar situations might help him be able to identify and cope with the emotions of what he's going through. So she said we should continue to have dialogue about what is going on with his heart in a meaningful way without making him feel like he's different, yet acknowledging that he is different, in the way of his heart. If that makes sense.

By about 4:00, the Physician Assistant came in and had Nicholas lay in bed so she could remove the pacer wires that were still attached to his belly. He had expressed earlier in the day to me that he was very nervous for the stitches to come out because they have to cut the knot right next to his skin. Needless to say, he was a champ, and barely winced. I asked when the lone remaining IV would be removed from his left wrist, and they said that it's almost superstitious to take out the IV before a patient is discharged, because it's Murphy's Law that they would need to give medication and then have to re-stick the patient. So as of this post, Nicholas has just one IV in his wrist and we hope that we will be discharged tomorrow and the darned thing can come out!

We waited a little while longer and at last they came in and said that we would be moving upstairs to the step-down unit. The step-down unit is a wing of the hospital where the cardiac patients go after they are no longer critical and are stable. The patients up there are still closely monitored by the nurses, but they are not watching them like a hawk. Our CV-ICU team gave report to the step-down cardiac team and Dr. Patel said Nicholas might possibly be her most favorite patient ever. She gave me and Nick each a hug and I felt like she really took good care of my boy. 

We arrived at our new room at around 5:30 and settled in. We have a double room with a bed for Nicholas and a couch like sleeping area for me.  Our roommate is an infant and the poor little guy has been crying non-stop. His monitors keep on going off and the nurse will come in and the dad will talk to the nurse about how the baby is in pain. As I started writing this post, I went out to the nurses station and asked if there is any other room available for us, because there is no way we will get any sleep tonight. Our nurse said he would talk to his supervisor to see if there is anything they can do for us. I hate being "that person", but my child is dealing with a lot of stuff, too, and we need to rest to heal. I feel a lot of compassion for the little baby and his parents. I have never had to deal with a crying infant post heart surgery, and I am sure they are completely frazzled. 

The charge nurse came in and said they could move the family with the baby to another room. She said that the doctor thinks there might be something going on with the baby and putting him in isolation might be beneficial, so the baby will be moving out, not us. The drawback is that sometime during the night tonight, Nick will get a new roommate. Apparently this new roommate is an older boy. I think we'll take it!

Tomorrow morning the team will do a complete survey with an echo and compare the LV and RV to check for any changes, good or bad. Pray for the LV to continue to hold steady and for the RV to stay stable, as well. If things look good, it is my understanding that we could be discharged to go home tomorrow.