Tues. Nov. 9: Day 8 in the Hospital

Would you believe me if I said we experienced a fire alarm based on not one, but two, actual fires today?! We woke at 6:00 a.m. to the fire alarm going off for what turned out to be a real fire in a utility room somewhere in the hospital. Our hospital room happens to be one of only two on this floor designed for deaf patients, so we have the blinding, flashing fire alarm inside our room instead of just in the public hallways. The lights woke Thomas and flashed for 30 minutes, during which he cried the whole time. He wasn't even excited to watch the fire trucks blaring down the road toward our hospital. Then later, much to my agog, there was a kitchen fire on the third floor, so we got to experience the flashing fire alarm in our room again. Meanwhile, there is a fire drill in the hospital twice daily, every day, so I quite chuckled when only an hour or so later after the second actual fire, the fire drill went off for the afternoon.

Today's Goals

The goal of today was for Thomas to receive nutrition and hydration support just like he would at home to make sure he could be sent home nutritionally stable. In the morning, we turned off his overnight tube feed, just like we would at home, and let Thomas eat as he would throughout the day. I had to get two ounces of fluid into him per hour, whether by him drinking or by letting his J tube pump run with Pedialyte.

Thomas's GI system did even better today! His system is organizing himself, he was able to eat more than 700 calories by mouth, and he experienced fewer episodes of Dumping Syndrome today. He also spent about half the day out of his bed, not hooked up to any lines at all!

Fun and Games

We played a riotous joke on the nurses when we put this gigantic stuffed animal in Thomas's bed . . . the nurses would surely think this was their little patient! Thomas hid in the corner and laughed at great length.

In the hallway, I ran into Miss Kristen, our favorite physical therapist from last spring, so I called her in to visit with Thomas. Later, Miss Lauren, the Nurse Practitioner who is second-in-command on the Rehab floor, spotted me in the crowded cafeteria--"Katherine!"--running over with a hug.

A lovely nursing student brought gifts for Thomas and played with him for a solid hour, and later Child Life came by and played card games with him. He also enjoyed a fun breakfast-time visit from his dad and brother.

Overall, Thomas had a sweet day and was in a good mood most of the time. He wrote me a love note on the chux pad in his bed . . . 

Tomorrow should be the big Discharge Day! In the morning, Thomas will have his Central Venous Line removed by the surgeon and then we will navigate all the administrative matters involved in going home.