I think I am safe in saying that this Thanksgiving was one our family will never forget. We had planned to go to Utah for the week, but in light of the event's with Spencer, the trip became that much more important.
We left early on Sunday and drove straight to Primary Children's Hospital in Salt Lake City. We made it in 7 hours, which meant that we got there in time to see my niece before she was discharged after having back surgery. Talk about a crappy place for a family reunion! Doug's family now has 26 grandkids and enough medical stories to fill a book. They are all miracles to us and now we need one more miracle!
We didn't stay too long on Sunday, but long enough to say goodbye to my niece and to say hello to Spencer and Doug's sister and husband. Cooper was the only one old enough to actually visit Spencer in his room, so that made it tough. Getting to finally see him and kiss his forehead was so wonderful and he really responded to Cooper, which just melted me. This is one remarkable kid and I say this with no bias. After taking care of hundreds of cardiac kids, this kid is simply amazing! He doesn't complain, he doesn't whine, he does what he is asked and when he is not in a good mood, he simply chooses to not engage. He has his Berlin Heart, a tube in his nose, a PICC line in is arm and oxygen under his nose and yet, you'd never know it. He is totally unfazed by his Berlin--he shows it to people and even knows how to get the alarms to stop when it's kinked. I am still in awe of this little man.
On Monday, Cooper got to spend time at Utah State with my best friend from college shadowing her as she treated the injured and banged up athletes. She is the physical therapist for all athletes and Cooper is thinking he might like to follow in her footsteps or at least to be an athletic trainer. He watched her do some therapy on the underwater treadmill and bumped shoulders with some of the big name football players on campus. It was a great experience for him.
We spent the rest of the week helping with Spencer's sisters and making trips to the hospital. It was nice to finally be the ones pitching in a little. My kids love their cousins, so it was a great week for them. Cooper and I spent about 7 hours at the hospital just the two of us on Tuesday and then we all spent Thanksgiving afternoon there. Tuesday was a little bit of a rough day for Spencer due to nausea, but I think he still really enjoyed Cooper's company. We got to meet his transplant surgeon, which was a very "small world" moment, realizing he trained under Cooper's surgeon. He knew all of Cooper's surgeons and where they were now. He knew the nurse manager who hired me and he was genuinely personable (not a common characteristic in cardiothoracic surgeons!). I had some very emotional moments watching Cooper interact with Spencer.
Cooper's gift to Spencer . . one for him, too.
Reading to Spencer in his room. The kid loves books!
We found out later that while we were there on Tuesday, his team was actually looking at a potential donor heart. It wasn't a perfect fit, so they rejected the offer, but it means he is that close. After 8 weeks in that hospital, it is time! As scary as it is, this kid is ready. He looks so good, his eating has improved, his kidneys are normal and he is going to do great. Every time my phone rings, I jump a little, so I can only imagine what it's like for his parents!
Our Thanksgiving at the hospital was perfect. They reserved a conference room for us and Nancy decorated the tables with homemade placemats and covered the tables with bedsheets. Is that awesome or what? It was just our family, Nancy's family and Doug's parents and the highlight of the afternoon was the smile on Spencer's face. He even asked to be turned around in his wheelchair at one point so he could watch his siblings and cousins play in the room. What a champ!
Our Thanksgiving headquarters inside the hospital
Love this pic! He could barely see over the table, but look at that smile!
He loved watching the kids play
The girls loved the white boards in the room
Cajun boil!
Grandma turns 70
Kinley and Jess (one of our other family medical miracles, born just shy of 28 weeks)
1 comments:
I just caught up on all of your blogging. Your kids are so darn cute!! Thanks for the great post about Spencer. I love to read your optimism. You also have some great pictures there that I may need to steal! Love you!
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