Day 72: Put This Down on the List!

Duplicated on our CaringBridge site for permanent record here.

Our 15th Wedding Anniversary, January 28, 2021, written by Mama

72 days in the hospital: 63 in PICU, 9 in the Oncology ward

The day started bright and early with a 7:00 a.m. call from Surgery: Thomas's chest tube output had fallen even lower than the day prior and they were ready to pull his chest tube five minutes hence . . . if we were ready? So, Thomas had his chest tube pulled (which does hurt, but he was a champ) and now he is so free of a four-foot long, inch-diameter tube that attached to a 1,000 cc drain on the floor! All he has left is a JP drain and his feeding tube.

A sweet lady gave us a "party kit" for Thomas, who has missed numerous parties in these last two months. Today was the Feast Day of St. Thomas Aquinas, his patron saint (and my Confirmation saint!), so the kit came with party hats for Mama, Thomas, and the stuffed animals, as well as balloons, and a wrapped gift! 

Truly, Thomas was so excited the night prior that it took an extra 45 minutes to get him to fall asleep while he talked about the party hats. In the morning, several furry friends were selected for invitations, as well as Nurse P----. Thank you to our friend who gave Thomas this delightful little experience! (All day long, he kept putting his party hat back on.)

Thomas had a full day of therapies again, including Physical Therapy in which he spent time sitting on the floor on a mat and then sitting on a bench, unassisted most of the time, from where he and I batted a balloon back and forth. We did have Thomas try twice standing up from the bench, with us two adults supporting him, and he cried a lot with the fear of the experience.

During Occupational Therapy later, Thomas spent more time sitting on the mat on the floor while playing various games: having fun while secretly building up core strength!

We also took a tour of the In-Patient Rehab floor of the hospital where we hope and pray Thomas can transfer next week. We also strolled in the rooftop garden.

In a new milestone: Thomas's bed was at about 30 degrees of an angle (which we actually know because there is a little angle meter on the side of the bed) and Thomas simply sat up from lying down to sitting up straight . . . like some kind of pro! 

Today marked surpassing 48 hours on his clear liquids diet and Thomas is a grumpy fellow, very dissatisfied with juices and broths. He is begging, fantasizing, and obsessing about solid foods. It is very hard to get Surgery on the phone in order to get permission to advance him to the next stage (full liquids--with dairy).

When Thomas is reluctant to do his PT or OT, I talk to him about how he really wants to walk, run, and play. If he wants to do those fun things, the way he achieves them is to do the exercises that the nice therapists want him to do. So now I am talking to him about eating solids: The Surgical Team has to see at every step that Thomas's stomach can digest the food in that category. Therefore, we need to have Thomas try as many clear liquids as he can so I can write them on my list and we can show them to the Surgeons: Look how many things Thomas has tried and his stomach is working well!

Perhaps this concept is finally sinking in because tonight when Chris was with Tom (and I at home), Thomas drank some apple juice and then noted, as if to his secretary taking notes, "Put this down on the list!"

Finally, let me publicly wish my husband Chris a Happy 15th Wedding Anniversary. We certainly never would have imagined how we would be spending it. We've never travelled away from the children, and as this year approached and our "baby" is older than three, I thought I was going to throw Chris a huge 50th birthday fete and then that he and I would travel somewhere away for several nights for the first time to celebrate our special anniversary! Instead we spent out anniversary eating a take-out lunch together in the hospital room with our son who wouldn't stop asking us questions about what we were eating . . . because he was so hungry. One doesn't know what God will ask of a person or couple or family. Even now, we think we know what God has asked of us, but we have no idea what our future holds. We are glad to be struggling along together and, while we wouldn't wish this cross on anyone, we wouldn't trade it away either.