Day 62: Beads of Courage

Duplicated from our CaringBridge site for permanent record here.

January 18, 2021, written by Mama

Last night I slept at home for the second time while Chris kept Thomas company at the hospital. I think maybe I slept a little better than the first time, although still experienced panic attacks. I also intentionally stayed one hour longer in the morning in order to visit with the children, but I definitely felt the stress immediately rising because the homing pigeon that is my heart was urgently trying to get back to Thomas.

I took a picture of Thomas with his Daddy this morning, telling Tom that he could look at the photo when he was lonely. Indeed, later in the day when he was crying his eyes out, he managed to say, "Show me the picture of Daddy!"

Thomas had a successful OT session in the morning in which he painted, among other activities. Throughout the rest of the day, I read him many stories, we blew bubbles together, and we played with toys.

Thomas asks to have his "friends" arranged around him numerous times per day. I watched today as he played with them by himself, perhaps for the first time. At one point, he spent considerable time with his constantly tremoring hands placing one squid tentacle into Woody's hand so that it would balance and he was so proud of finally accomplishing it.

It also turns out that he is now strong enough to pull the cord on his Woody doll!

In the afternoon, Thomas underwent an upper GI study where he drank contrast dye while being X rayed live time. The doctors were investigating the cause of his painful retching up of green bile which began ten days ago on January 8. The x ray ruled out a mechanical problem, which is good because mechanical problems are fixed by more surgery. Therefore, this is considered a functional problem. Thomas probably needs lots more time to figure out his new reconstruction. His GI tract has to get its peristaltic action coordinated. Also, the Dilaudid, Methadone, Ativan, and Clonidine all slow down his motility. A functional problem won't be as easy to fix, but at least it does not require surgery.

In the meanwhile, the doctors prescribed him Gabapentin which should generally calm down the nerves of his gastrointestinal region. This may help and the doctors consider this drug a better choice right now than the Thorazine, which is heretofore the only medication that stops the emesis.

Thomas did manage to mysteriously lose his peripheral IV while we were down at Radiology. I was so close to him, I was holding his hand or body almost every minute, yet the nurse, radiology tech, doctor, and I all failed to notice when the IV pulled out of his arm. At least he must not have felt it, nor was there any blood, and so far the team thinks Thomas probably does not need a PIV inserted anew (another milestone!).

Big Goals: Thomas is in the midst of weaning off Dilaudid, which will be a huge accomplishment. They decided to make the final push over these 24 hours, so he should be weaned entirely by morning. So far, so good, he's actually had an excellent day, which tells us so far that his high Methadone dose is appropriate.

In Big Milestones of late . . . During the month here when Thomas lived so close to death, he had his various CBC, coags, and other blood labs done as often as four times daily, results back within a half hour, week after week. When more stable, they were done twice daily, then once daily. A few days ago, his lab orders got reduced to twice weekly. Also, they have always kept his "type and cross" for blood donation active. It is a test completed every three days so that if the patient ever needs blood, the hospital blood bank already knows both the type he needs (e.g., A+) but also all his current antibodies (because they match even those!). Well, tonight they decided not to renew his type-and-cross because he has not needed any blood donations in 14 whole days (since January 4). He has received a total of 92 units of blood product, if my personal tally is correct, almost all of those in that four-week period that ran red before my eyes.

Tonight one of my favorite nurses who is a personal balm to my soul came by having spontaneously completed Thomas's Beads of Courage. She wasn't even assigned to Thomas's room tonight. Do you know how much work it is to complete Beads of Courage by digging through a chart as thick as Thomas's? She hugged me and I cried . . . and cried more after she left the room.

Beads of Courage from 62 days in the hospital