Mon. Nov. 8, 2021: Day 7 in the Hospital

Big Strides Today!

Thomas was up at least 6 times overnight plus his TPN pump blared countless times--requiring me to get out of bed and call the nurse--but I'm grateful that we "slept hard" in between all the wakings.

Bright and early, Thomas was simultaneously cleared for full fluids (includes dairy) and "soft foods that are easily digested." (Interesting tip: some soft foods, like bread, are actually among the hardest foods to digest, so being soft physically is not the only requirement.)

Receipt from Thomas's food tray

The plan is to make today (Monday) his second and last day of TPN (providing 80% of his calorie goal).

We incrementally increased his tube feeds up to 50 mL/hour today.

Then the plan is Tuesday morning to turn off his tube feeds, just like we would at home. Then for Tuesday overnight, we would get the tube feeds up to 70 mL/hour (his "home rate") and run them just overnight like normal.

We will be watching all the while during the day times how he is eating by mouth. I already know there is no way he will be able to meet his daytime caloric needs by mouth or meet his fluid goal, so I'm going to be tracking every bite of food (like I have to do daily) and will be running Pedialyte during the day (2 ounces per hour), as well as enough tube feeding to offset what he isn't eating.

Thomas was very excited to begin eating! He endures being NPO without complaint, which astonishes me and seems like a true grace from God. This time he went 6 full days without a bite of food or any liquid through his mouth (and not even any calories otherwise till the sixth day), but never complained.

He ate some tiny amounts over the course of the morning, such as 1 ounce of milk, half a Saltine cracker, one square of Lance cheese cracker with PB, one quarter cup of Rice Krispy cereal . . . each taking about 30 minutes to eat. 

My boy needs a hair trim!

Sugar-free Jell-o: yum!

Unfortunately, about five times today, Thomas showed symptoms that look similar to dumping syndrome, but my guess is they are representative of his intestines being very "disorganized" right now.

We knew going into this needful surgery that it would set Thomas back for awhile. It seems like his body is behaving right now similarly to how it did when he was discharged last March. His care requires a high degree of my involvement and my ability to stop whatever I am doing at a moment's notice to help him for 15, 20, 30 minutes at a time, maybe a dozen to 20 times per day and night--while I am homeschooling five grades, wrangling a preschooler, and trying to keep the house neat and meals put on the table. God is truly going to have to fill in tremendous gaps, or sanctify us all by my complete inability to fulfill all these roles.

There is a reason Thomas and I couldn't really leave the house for the early months when he came home, and I expect we will go through a similar transition, but probably much more rapid (praying for weeks instead of months).

However, all of this should make for him a much better functioning digestive system for the rest of his long, wonderful life!

Thomas got out of bed and walked around the room today, hanging out on the couch with me and doing some school. This kid has really taken off with reading lately, let me tell you: I love watching it!

Tuckered out at the end of the day

In exciting news on the home front, Joseph (8) is now officially a Junior Postulant altar boy at our parish and tonight was his first altar server practice. We are so pleased for him and he took it all very seriously. (Thank you to my 12-year-old for babysitting so Dad could take the boys to altar serving!)