Ty has been so depressed today, and I really can't blame him. I think it's just a combination of the steroids, the withdrawal from the wealth of narcotics he was on when he was intubated, the constant chaos in the Pediatric ICU and the fact that we are sharing a room with two older teenagers. Both of whom are incredible kids, so brave, but when he is away from other little guys his age I think he begins to feel more of an outsider. Plus they are up so late at night, it's really taking a toll on Ty. He should be in a room with other little kids who are tired by 8PM. This really drives me crazy!!
The good news is… we are supposed to go home tomorrow. In all of my experience, the minute we walk out the door of any hospital Ty's mood turns around. It's a sure way to get a smile. As are presents - and he received an amazing present at the hospital tonight. It was so special and it was the only time all day I saw him perk up, even if only for a short while.
I only wish he would have shown a little more enthusiasm when Tom stopped by tonight. At Sloan Kettering, Ty has four primary nurses… Rae-Ann and Sue during the day, and Daniel and Tom at night. That just means that they have "first dibs" on Ty if he is inpatient when they are working. It's a wonderful system that I wish more hospitals would adopt because it has allowed us as a family to really get close to Ty's nurses. We learn so much from them and we really love them. Plus, they totally watch out for our interests on so many levels and they help us to be better advocates for Ty. The relationship goes both ways, too. Sue told me that she was approached by a parishioner at her church up in Albany who asked if she ever saw a boy named Ty Campbell at Sloan because she had been following his blog. "Are you kidding?" Sue said. "He's my love - he's mine!" Then there was the time that Daniel stopped by the hospital on his DAY OFF to bring Ty a DVD on firetrucks. Oh, and the reason he was off work was because his wife had just given birth to their second baby a couple weeks earlier. Rae Ann stops by the clinic to say hello whenever she can, and Tom ALWAYS knows where we are and makes every effort to stop in before or after work if we are off the floor. In fact, he was randomly wearing a "Ty" tee the night we ended up in Urgent Care… that's how connected he is J I wish Ty gave him a shit-eating grin and a hug around the neck instead of a furrowed brow with silent treatment, but Tom totally understands. It doesn't stop him from checking in on us. THANK YOU ALL FOR BEING SO GOOD TO US!! I just have to share this clip from a Johnson and Johnson commercial featuring our Tom that I just found out about. I'm so proud of him. Everything he is in this commercial is exactly who he is when caring for our Ty.
Not only are the nurses the best, but we have some great volunteers who come in to play bingo and make slime with the kids, the candy cart on Fridays, even the cleaning crew and the guys in the parking garage have become like family. We have spent way to much time here, but we are grateful for all of the wonderful people who make our day to day encounters that much easier.
Home tomorrow will be a dream. I am about to pour a glass of wine from my stashed bottle so I can fall asleep at some point tonight among the noise. It's so bad, I wish I had something stronger to fall back on but it's better than nothing. Just kidding, sort of. The truth is, Ty wakes up so often that if I ever dare to take something like a Tylenol PM, it would likely be a disaster because that would be the night I get only two hours sleep or something.
I miss Gavin so much. Speaking of Gavin, just look at this adorable face. He is such a character, I can't wait to squeeze him tomorrow.