The Man Himself

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

Tuesday, August 7, 2012

The Journey Begins

Last Thursday (August 2nd) Nick, Mike and I met with Nick's surgeon, Dr. Vaughn Starnes at Childrens Hospital Los Angeles (CHLA). Dr. Starnes is a rock star in the Cardio Thoracic surgery world. He's done all 3 of Nick's surgeries and we're blessed to have him work on Nick again.

When Nick was born, he was a pretty serious case, medically speaking. I've kept in touch with folks at CHLA over the years, particularly Barbara Gross, Administrator of the Heart Institute at CHLA and they've remembered Nick whenever I've been back. But Nick has not actually been back to CHLA until last week, yet the people who were there when he was a patient remembered him - and welcomed him warmly. It was so beautiful to see this reunion - the nurse, Alma, from the Cardio-Thoracic Intensive Care Unit (CTICU) who cared for him the night before his first surgery as a newborn when he was VERY sick, was almost in tears as she gave him a hug these [almost] 11 years later.

Nick felt good about that. Then Dr. Starnes described what would be going on during the surgery and answered Nick's questions with forthrightness tinged with humor, which helped. From the first blog entry you may remember that Nick has a cadaveric valve in his pulmonary spot. It's size is approximately 9mm and it needs to be replaced for a larger one. Next Thursday he will go through full open heart surgery and they will remove the 9mm valve, replacing it with a 16mm valve which will last approximately 12 to 14 years. Another great thing about this new valve (other than it will fit his body needs better) is that it's big enough so that the next replacement procedure can be delivered via his vein in a catheterization lab, meaning no open heart surgery next time! But I'm getting ahead of myself, that procedure is over a decade away... still exciting, though!

After meeting with Dr. Starnes, Barbara asked us if we would be willing to speak with a family across the hall who have a 3 week old who is about to go through the same surgery Nick had (the Ross Procedure.) We all said yes, including Nick and it was a great experience for all of us. The parents spoke directly with Nick, asking about his activities and how he feels and Nick answered honestly, "Well, pretty much like any other kid, I run, play basketball and stuff and if I play too hard then it gets hard to breathe a little so I stop for about 2 minutes, drink some water and go back to playing." Then they asked about his scar, and Nick being the trouper he is, lifted his shirt and  just showed his scars, which they were excited to see had healed so well. It was an empowering experience for him, sharing his experiences and for the other family to see a child almost 11 years after the fact who is doing so well, which I believe gave them hope and a little comfort.

And that's not all! At CHLA they have staff members called Child Life Specialists who talk with older kids about the procedure they are about to go through. Though they usually speak with patients the day before surgery, I asked for a meeting last week and Christina met with Nick. She saved the technical stuff for next Wednesday (pre-op day) but instead gave him a tour of the rooms in CTICU and on the CT floor where he would be after surgery. She did a great job of explaining what to expect after surgery when he wakes up including all of the machines that he would be hooked up to and seeing when he wakes up in the CTICU.

He understood and took it okay. Then she pointed out the t.v. which has unlimited movies and internet access to play games. Then the smile on his face started growing bigger, especially after finding his favorite movie. Then she showed him a room in the CT wing that he would be in after the leaving CTICU which had less machines, but again, a t.v., this time with a touch screen. Smile got bigger. Finally, she showed him the playroom, which is open 2 hrs a day and is fully stocked with boardgames, computers and his newfound love - an XBox (which he only gets to play at his friend's house.) The smile was all out huge and he was digging the idea of a hospital stay at that point. Now we're not advocates of tons of media or gaming, but if the thought of it all helps Nick to go into this with a more positive outlook then it's okay with us.

All in all, it couldn't have gone better last week. Oh, and then I remembered that CHLA has a dog therapy program where you can request a visit from a specially trained therapy dog in your hospital room and Nick was interested in that, so we found out the particulars and it's on the to-do list once he's out of CTICU.

In my next entry I'll let you know about the particulars of giving blood if you are interested (and local, of course.) Until then, please keep sending your prayers, positive energy and thoughts! Thank you!

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