The Man Himself

The Man Himself
Contemplating the Universe with the help of a cotton candy beard.

Saturday, August 18, 2012

Long Night, Long Day...

Okay, for starters, Nick is doing great. Thank you for all of your messages, thoughts, texts, prayers, etc. They are appreciated and working!  Thank you also for your prayers for Phoenix Baby! He did better Thursday night and was having a good day Friday the last I talked with his dad.

I can't believe it's already after 10 pm Friday. This day has been one of those crazy ones where you turn around and say "WHERE did the time go?" Sorry that I didn't update at all, but in this case no news was good news. I was constantly bedside with Nick and use of the laptop or cell is restricted to 6 feet away, so I made the choice to be near him.

Nick was brought into ICU just before 6pm Thursday night. He was already coming out of the anesthesia and that stuff kept us all on our toes the whole night and a good portion of Friday. As usual with anesthesia, the brain is coming out of a DEEP fog, and with Nick it took a long time. He would wake up and fall back asleep asking the same questions and we learned quickly from his fantastic nurse Alisha to calmly give the same answers over again and eventually he would remember.

The hardest part was the anxiety that accompanied this period. It's still there to some extent friday evening. Nick didn't remember going into surgery and would ask when it was going to happen, if it was over, why did he have wires and tubes on him and could he drink water over and over and over again.  He couldn't have water for hours because of the potential for throwing it back up so we had to make due with mint tasting swabs (small sponges on a stick) dipped in ice water that we used to swab throughout his mouth. By midnight we were giving him small sips and that helped a bit. But mostly this question and answer routine was repeated every 10-25 minutes throughout the night. Mike stayed over and God bless him, he was exhausted when I arrived Friday morning after spending some time with Sabrina.

Friday was actually mostly good, even though it was a constant up-down day for me at the bedside too. Nick got to eat  around 11:30 am (pancake, jello and juice) for the first time and kept being ravenous through the day. He tolerated food and by dinner time got to eat pizza. Granted, not the most healthy diet, but it lifted his spirits! He kept with the questions, just not as often, but it showed how strong the anesthesia was that almost 24 hours later he didn't remember some things, like the chest tubes - what are they for again? These are tubes with one end placed internally, one in the space between the two lungs and two others at the sides, to drain excess fluids. They then run out of the body as long, hose-like tubes attached to collection boxes with a suction that seems powered hydrolically that sounds like a group of boiling cauldrons so it gets pretty loud bedside. It's a love/hate relationship and Nick refers to them as his octopus tentacles which is an apt description as they go everywhere with him as he walks.

It's amazing experiencing this with a kid who can talk and give opinions. Nick's first 3 surgeries were before he could really speak (he knew a few basic words during his 3rd surgery but wasn't completely communicative) so they kept him much more sedated for comfort. Now they brought him out of the OR already with the breathing tube removed, which is great, but didn't allow for continued sedation medication, only for pain medication, which didn't help with resting.

Around 4:30pm Friday Nick moved out of ICU and into a room in the CardioVascular Acute floor. He continued getting more lucid, getting out of bed to walk to the bathroom, eating, drinking and playing the XBox. The Child Life Center found a travelling XBox for him to keep for the rest of the weekend and he's borrowing some games from his friend Max to help supplement the hospital's game library. Thanks, Max! :)

Nick has had most all lines and tubes removed except for the chest tubes for draining, IV for all meds and EKG stickers to monitor his heart function. His meds are down to pain medication which is weaning down to an IV Tylenol product (seriously) but with options for something stronger if needed, a stomach soother and antibiotics. He came out of the OR on only one heart medication, milrinone (spelling?), but weaned off that Friday morning. He did get one dose of IV Benadryl for itching at bedtime and thankfully it knocked him out for a good 5 hours, which was a God-send after not resting since surgery. He is doing amazingly!!!

It's about 7 am Saturday and today's goals are to have the chest tubes removed, walk down the hallway and Nick's personal favorite, to play in the Playroom. I'll be better about posting today since he's much more independent now.

Signing off from Nick, me and Tony Hawk (XBox version, that is)... Til Later!

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