As suspected, today was a very long day. Even longer than we anticipated. Ty went to bed late last night (after 10PM) but he slept well. He didn't even wake when I gave him his medication at 11PM and 5AM, which is unusual. And, we all slept together for a change because we didn't have Ty hooked up to his feeding tube. It was a nice night.
I can't say the same for the morning, though. At 6AM, I flushed Ty's IV and got ready to leave for the hospital. It was like a Monsoon outside! Lou was so concerned about me and Ty going off to Sloan Kettering in such bad weather that he decided to take the day and come with us. Reflecting on today's events, I don't think I would have been able to survive this day without him. Thank you DADDY! You are the best!
Ty woke up at 6 when I changed out his meds, and he was in a very bad mood. He cried so much that it woke up Gavin, and our house was a crazy house for the next hour. We got dressed, packed up all of Ty's medication for the day, and we were out the door just after 7. Ty was scheduled for a PET and CT scan at Sloan Kettering at 1:30PM, but in order to prepare for the test, we had to arrive by 10:30AM. The test requires an oral and an IV contrast, in addition to anesthesia, so Ty was not allowed to eat anything (NPO as the doctors and nurses say) from 12Midnight. Try explaining to a three year old that (1) he can't have anything to eat or drink for hours on end, and (2) we are going out in the pouring rain before the sun is even up to sit in traffic for a couple of hours, so that (3) he can have more tests done at the hospital.
As I feared, the car ride this morning pretty much consisted of Ty crying and complaining. It was worse than I expected because he literally screamed the majority of the time. The saddest part is hearing him say "Turn the car around Daddy. I don't want to go haw-pi-dal, I NOT SICK!" over and over and over again. When we pulled into the parking garage his face turned so long and he asked me if he was going to get another needle in his arm. It just rips my heart to pieces.
Funny enough, the first half-hour of the car ride home after a very long day consisted of the opposite complaint. Ty screamed that he didn't want to go home, he wanted to go back to the hospital because they have an awesome toy room and cool mini-boxes of Cheerios. I had a bag of cheerios in the car for him, too, but it wasn't a box… and he wanted a BOX. When we were about 1/2 hour from home is when he started asking "we there yet?... we there yet?..." About 15 minutes from home he started screaming that he wanted us to stop the car because he wanted to walk the rest of the way home. He insisted that he needed to get out of the car. He was so relentless that we actually pulled over to let him out for a few minutes when we stopped to pick up Gavin before continuing home.
Home sweet home and have a good night! Here is a picture of Ty in one of the waiting rooms today.