Day 117: The Emotional Artist

Duplicated on our CaringBridge site for permanent record here.

March 14, 2021, written by Mama

117 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 11 back in the Oncology ward.

Chris and I swapped back this morning so Chris could donate blood as part of the third blood drive that has been organized in honor of our son: two at our neighborhood and one online. We are so grateful for all people who donate blood as we've now seen how it saves lives.

Medical Updates

Thomas's X ray today shows his pneumatosis starting to improve, so thank you for the prayers! His serum lipase and amylase are decreasing back to normal levels again, which was hoped-for after the anticipated elevation following the CT fistulagram (which pushes contrast dye into the pancreas and makes the pancreas angry). 

Thomas was crying in my arms today about wanting to eat. Even with TPN, not being allowed to eat or drink is a true suffering. He asked me to take him to the cafeteria and buy him a snack that he can have on hand "for when I'm allowed to eat again." We took that field trip.

Speaking of TPN, I have learned that the inventor was a surgeon named Dr. Stanley Dudrick, who only died one year ago. He chose never to patent his work so that it would be available to save everyone who needed it, and he is credited with saving tens of millions of lives . . . and now I count our son among those. I wept reading the below article about this doctor and I thank God for giving particular brilliance to certain minds so that they can benefit humanity. May Dr. Dudrick rest eternally in peace.

Dr. Stanley Dudrick, Who Saved Post-Surgical Patients, Dies at 84

In other news today, Thomas has struggled terribly with what the nurse and I recently suspect are withdrawal symptoms as he transitions from oral clonidine to patch clonidine (a form easier to go home on). God gifted us today with a particular nurse who knows Thomas well from his prior month on this floor, instead of a stranger, so this nurse absolutely knew that Thomas never behaves this way and that Mama was not being crazy saying how strongly this is out of character. He is asleep now, but spent the day very irritable, irrational, yelling at me and at nurses, with restless legs syndrome driving him nuts, and he had a piercing headache twice. They are lining up a dose of "rescue medication" as I write this update.

The Tortured Artist

While feeling this grumpy, our boy did art maniacally all day long. All the photos below don't even capture all his art. He would finish one art project just to demand I set up a whole different form of art. He is a passionate artiste!

Sharing a gift of meditation that a friend shared with me today . . . 

"Knock. Persevere in knocking, even to the point of rudeness, if that were possible. There is a way of forcing God and wresting his graces from him, and that way is to ask continually with a firm faith. We must think, with the Gospel: 'Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you,' which he then repeats by saying, 'Everyone who asks receives, and he who seeks finds, and to him who knocks it will be opened' (Luke 11:9-10). We must, therefore, pray during the day, pray at night, and pray every time we rise. Even though God seems either not to hear us or even to reject us, we must continually knock, expecting all things from God but nevertheless also acting ourselves. We must not only ask as though God must do everything himself; we must also make our own effort to act according to his will and with the help of his grace, as all things are done with his support. We must never forget that it is always God who provides; to think thus is the very foundation of humility."

— Bishop Jacques-Benigne Bossuet, p.35, an excerpt from Meditations for Lent