The Man Himself

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

Tuesday, September 18, 2012

How is Nick doing?

"How is Nick doing?" You may have asked yourself (and me) this question in the last month. I honestly can not believe my last posting was a month ago!

The great news is that Nick is doing incredibly well. Really. When last I posted, we were headed home. Truly, no sooner did he walk in the door than he wanted to have a friend over to play on the iPad. And he did. Seriously. This kid was ready to take on life again in every way he was allowed.

What do I mean by that? Well, obviously there were and still are post-op restrictions. Basically, the heart and all incision areas (main incision and where the chest tubes were) plus the breast bone all had to heal and each one had a different restriction. For his breastbone there are restrictions such as no playing games where projectile objects could come his way (basketball, frisbee, volleyball, soccer, tennis, you get the idea), and the "nothing you can fall off of" rule which includes his bike, scooter, etc. For his incision areas he could not get them immersed in water because of potential infection so that cut out swimming. Thank God (truly) he could still play board games, video games, walk the block, watch tv and read!!!  I swear he went through the entire Percy Jackson and Heros of Olympus collections AGAIN in the last month (we're talking 7 books over 250 pages each there, folks.) No doubt he took on what he could with gusto and without complaint. He was even off of pain meds by day 7 of being home.

All that being said, he still led a rather normal life these past four weeks. To see him walking down the street no one would know he had been through such a major ordeal. He is such a trouper he made lemonade, lemon bars, lemon cake, and lemon icees out of his lemons! :)

Truth be told, he's had some pretty great highlights these last four weeks. The first one was getting to tour SpaceX headquarters. Space X is the private company that has taken over where NASA left off: getting USA rockets and astronauts back into space, plus they're working to do it from a more sustainable perspective. It was 90 minutes that sparked the imaginations of Nick and all of us on the tour - and started conversations of what will the future bring? Another highlight was celebrating his 11th birthday this past weekend. He began on Friday night by getting back in the pool for the first time and (using his legs only since he is restricted on arm movement b/c of the resistance the water creates) he was like a fish. It was beautiful to watch. Then Saturday and Sunday were fun gatherings with family and 2 friends. When he is given complete physical clearance in mid-October we'll celebrate with more fun activities.

Yesterday was his first day at school even though the school year began 2-1/2 weeks ago. I'd worked with the teachers to keep him up to speed so when he arrived yesterday he was pretty well set. He also already has two good friends at his new school and as I watched him play before the bell rang there was no doubting that he would fit in and do just fine.

We are so proud of Nick and Sabrina getting through this time the way that they did. How are we doing, you ask? We're doing well, too. Sabrina is taking to the new school well, also and has made some good friends plus she's playing AYSO soccer this Fall. Mike is programming more and learning and creating partnerships with what he's creating. I have launched a business in skin care promoting an anti-aging night cream that was discovered by a biotechnology firm that was working on curing skin cancer. It's an amazing product and company and I'm proud to be affiliated with them. I'm also about to launch an inspirational blog for women, so I'll keep you posted on that launch as well.  Plus I stepped up to be PTA Treasurer, so I've got my hands full - again. :) As for our move, the house we were "set" to move into fell through since the current tenants changed their minds and decided to stay for another year. This was a huge bummer for all of us as we adore this neighborhood and being so close to such good friends. The house hunt is on again and truly, we know there is a perfect home out there for us -- it's just a matter of finding it!

I pray this blog finds you well and in a good space. Your thoughts, prayers, energy and love have continued to make a difference for Nick and in all of our lives. From the bottom of our hearts, thank you.

Sunday, August 19, 2012

We're heading home!!!

Yes, Nick got the green light to go home today!! Just waiting on medications and discharge papers to be signed. WooHOO!!

More later when we get home. The good news is that as much as he'll be taking it slowly over the next few weeks, his life will be pretty normal.

Okay, off to the pharmacy, more later tonight!

Thanks and love,

Saturday, August 18, 2012

What a difference a day makes!

From our last post, today's goals were:

Remove chest tubes: Done
Walk down hallway on his own: Done (a few times)
Play in Playroom: Never opened, but he would have been there!

Other great milestones today:
IV removed
All medication is now given orally
Eating and drinking what he wants
Sense of humor returned
Breathing is getting stronger
Played on XBox and remembered it!
Learned a new card game and was clear headed enough to remember the rules
Described pain as being a 1 on a scale of 1 to 10 where 10 is the worst pain ever felt personally.

As long as all stays the same and the fluid continues to drain out of his chest as it has been, Nick is coming home tomorrow! (Sunday!) I will post tomorrow as I know more.  Go, Nick!

Thanks everyone, for keeping up the faith!


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!

Thursday, August 16, 2012

Please pray for Phoenix Baby!!

Hi all,

Your prayers and wonderful thoughts and energies have helped Nick come through so well. He is resting, a bit fitfully, but that is normal until the meds (anesthesia,etc.) wear off which should be in a few hours.

Please, please, pray for a baby that had a Ross surgery today, I'll call him Phoenix Baby since that's where he's from. His surgery went okay, but he's had a very tough day and is fighting right now.  Send him the same wonderful love you sent Nick, please!

Will update more as things progress.

Thanks and love,

He's Out of Surgery!!

Just got the call that Nick is out of surgery and heading to his room in the Cardio Thoracic Intensive Care Unit (CTICU). He'll be there for about a day. More later, I'm about to talk to his surgeon in a few minutes to go over how the surgery went. 

The complicated part is over...

Just got the call that the valve has been replaced, Nick is off the heart/lung bypass machine (which means his heart is pumping on its own again now) and he is in the "rewarming" period which is where his blood pressure is normalizing. He's still an hour to an hour and a half away from the end of surgery and being closed up, but the first phase is done! 

Still working on the post about this morning...:)

Keep the prayers coming! Thank you, thank you, thank you!