Day 47: Thomas Speaks Up

 Duplicated from our CaringBridge site for permanent record here.

January 3, 2021, written by Mama

What a special day Thomas has had! 

First of all, he is starting to wake up. Since his surgery on December 26, every time Thomas woke, he woke immediately crying in pain and could be settled by nothing but another injection of one or another heavy drugs (or, like, eight drugs in a row). In contrast, now he is waking and simply being awake and comfortable (on his methadone, Ativan, Dilaudid, and Precedex around the clock--of course!). Thomas was awake for two whole hours this morning, took a brief nap, then awake two more hours until around 1:00 when he took a proper, deep afternoon nap. Then after another TPA procedure in the afternoon and lots of shifting his position around to make it efficacious, he was exhausted and took a deep nap at 4:00 to 6:00. This process of starting to have wakeful periods and distinct periods of true napping reminds me exceedingly much of this same process with newborns getting older.

I slept in a Sleep Room last night and when I returned, discovered that J---, one of the nurses I trust most because of her tender heart, had decided to teach Thomas some words. He could now say, Mama, Daddy, the nurse's name, and "I love you!" 

Thus began a day of my making many recordings!

Prompting Thomas to say, "Daddy, I love you!"

Thomas has been drinking 50-100 cc water off a sponge (me feeding him) hourly while he is awake, so Surgery expanded permission to "clear liquids." That means popsicles! Thomas did amazingly well, even using his teeth to scrape ice off the Popsicle and then "chew" it before swallowing. 

He impressed us all and he really liked the popsicle . . . so much so that he smiled! First smile since Christmas eight days ago!

Thomas is also beginning to volunteer some words, instead of just copying what I request. After his long morning of wakefulness, I asked if he wanted me to read him a story. He shook his head no, and then knocked my socks off by saying, "Dim the lights." 

I replied, "Did you say 'dim the lights'?" 

He repeated clear as day, "Dim the lights."

So I listened to the man and turned off the lights!

Holding his little crucifix and practicing saying "cross" . . . 

Holding the Sloth Popper his grandpa gave him and practicing saying, "Grandpa" . . .

We played with the Woody doll given him by the hospital at Christmas. Even then, Thomas wasn't strong enough to grip the pull string, but today he was! Later in the evening, Thomas even spontaneously asked for Woody, which was exciting.

Medical Updates

In medical updates, we continue to work on Thomas's pleural effusion. While he underwent a successful thoracentesis yesterday, the body continues to produce the fluid. It must be removed and yet the left chest tube continues to function while the right chest tube continues to give us trouble. Today we did a third TPA treatment (standard for the protocol) but, unless something changes, Thomas is scheduled to have his right chest tube replaced in a different location on Monday morning. That will be with conscious sedation, but is still a tiny surgery down at Interventional Radiology and my nurse tells me that her adult patients have said that the chest tubes cause very great pain for the first day, pain even to breathe.

Thomas's kidneys continue to do amazingly well. They are cleaning his blood beautifully. Right now, Thomas is receiving both albumin and Lasix for a couple of days in order to get off some extra fluid, so, for example, he put out 1.5 liters of urine in just the 12-hour day shift. The Nephrology team feels so certain that Thomas will not need intermittent dialysis--barring some big setback--that the team is now talking about when to remove his PermaCath. Any central line is a serious infection risk, so we don't want to keep any we don't need. However, taking it out will require a trip to the Operating Room, so the team has currently added it to the list of, "If Thomas goes to the OR for any reason, have them remove the PermaCath." Give it some more time, and I think this task will move up the list to "Schedule the OR intentionally to remove the PermaCath."

Appreciating the Moment

On a day like today, it is so hard to resist being seduced by hope. However, one also does not want to fail to appreciate gifts from God. I am trying with all my will to live in the moment--like in this five minutes of moments at a time. I thank God for the improvements Thomas has experienced and I pray, if it is God's will, that they continue.