Day 56: What Feels like the Dawn

Duplicated from our CaringBridge site for permanent record here.

January 12, 2021, written by Mama

If God was testing me on Monday, I'm sure my despair was a failure! I appreciate so much the 50+ encouraging notes on our CaringBridge page and the many texts and emails from concerned friends. I'm a little embarrassed about revealing how hard this gets during the darker moments, but I guess now we've all had a glimpse. So many of you had truly very valuable meditations to offer me, I've read them all, and plan to read them repeatedly. Also, I'm not at all ashamed to admit and I think those who love our family would be glad to learn that I'm seeing weekly the psychologist team that is part of Thomas's Oncology Clinic: it's an unusual cancer patient, parent, or sibling who doesn't need counseling to get through this situation better.

After Monday's setbacks, on Tuesday God showered Thomas with graces and milestones: it would have been better for me to have been waiting with faith for those to happen or not happen.

Overnight Monday to Tuesday, Thomas's mind cleared enough that he became much more aware of all the lines and tubes in his body . . . which scared him mightily. Many times during the night, he woke crying in fear and asked me to cover up his arms so he could not see any IVs. The wakings during various amounts of time to settle, ninety minutes being the longest. As sad as all that was to witness, it is a positive in that he is becoming more aware of his surroundings (milestone!). Thomas felt the chest tube in his back for the first time and asked me several times overnight to fix whatever the lump was and take it out. I couldn't take it out and I didn't really want to tell him what it actually was. God even gifted Thomas its removal: Today at morning Rounds, it was announced nonchalantly, "We're going to remove the posterior chest tube today." (a milestone!) (He now has one of three chest tubes remaining to drain his pleural effusions.)

Thomas woke up at 7:00 a.m. talking and talked all morning, including to staff, which normally he does not do. He was crying due to missing his Daddy so he accepted my offer to video call his Dad, and then he was strong enough to talk to most of his siblings one by one, which he has never been able to do before (a milestone!). He is showing his will, which is also good, such as saying he won't practice eating ice chips like Speech wants him to do because, "I don't like it!" He has several times asked me to pick a new blanket for him and he selects from several colorful blankets in the room. I asked him if he had a preference which book I read to him, and he remembered and named a book I read him only once and when I thought he was heavily sedated, The Invisible String.

Milestone: During Speech Therapy, Thomas successfully drank from a straw, which he could not do two days prior.

Milestone: At Physical Therapy, Thomas sat on the edge of the bed with his legs dangling down. (Did you or I climb Mount Everest today?!) Pardon the unflattering picture, but it took five minutes just to gently get him into position and he was exhausted, barely able to lift his head a little and unable to fully lift his eyelides. However, this photo is beautiful to me because it is radically stronger than anything he has done in 56 days.

Milestone: By the afternoon, Thomas was weaned entirely off of Precedex. He has been on this sedative since his entry into the hospital and today he is free of it. I pray to God that Thomas has no need to go back on this medication.

Thomas and I built Legos, which means he told me what to build ("a monster truck!") and then I talked about what I was building as I did it. Thomas corrected me like an armchair quarterback or backseat driver, telling me to remove certain pieces I thought looked good, but clearly I was wrong. (Later when I went home to visit the children for 4 hours, Daddy played Legos with him. After attempting to be creative for a while, Thomas dictated to him, "Instructions!" Dad used the instructions after that.)

Smiling as he poses with our Lego

A wonderful milestone occurred in which Thomas felt well enough and had his mind-altering drugs reduced enough that he regained some of his autonomy and modesty. He began crying when it was time for the nurse to do some body care and he expressed that he wanted only Mama to do it. So, the new norm is that Mama does that personal body care while we are alone and then the nurse comes back in the room to finish other work. Especially with our loved ones having read my despair just yesterday at how useless and ineffectual I feel, you can easily imagine my surging joy that I have the privilege of being wanted to be the only one who does my boy's body care. Mamas drowning in the task of changing their babies' diapers can try to appreciate the privilege of being the one to do it in lieu of an endless stream of strangers in a hospital room.

Milestone: Also, after all my terrible upset about the J tube feedings being delayed--probably for great length!--the very next morning (Tuesday), it was announced at morning Rounds totally casually, "And we're going to start J tube feedings today. Let me just put that order into the computer . . ." It took awhile to get the pump and formula sent to our room, so without fanfare at 5:00 p.m., Thomas began receiving feedings at 5 mL per hour. The quantity will be increased very slowly. So far so good. 

The Spirit of Despair dragged me down on Monday before Tuesday turned out to be one of the best or outright the best day of Thomas's stay here. The roller coaster does continue, as the staff told me it would, and Tuesday overnight was one of the more challenging nights, possibly the most challenging night in terms of withdrawals. During the day, we had not only weaned the final 0.2 of Precedex but they weaned the first part of the Dilaudid from 0.25 to 0.2. On other kiddos, that wouldn't be much, but Thomas is very sensitive.

By evening when I returned from visiting home, Chris told me Thomas was really upset and I could hear him crying in the background. Chris ended up staying with me past midnight just to try to get him to sleep. Thomas was experiencing powerful opioid-withdrawal causing delirium and seemingly terrifying hallucinations. He kept looking at things in the room wide-eyed, saying, "Look!" He expressed so many times fear of spiders he could see that we could not. He wailed in fear about unknown concerns in his mind. He was afraid of the cute painting of fish on the wall. The blanket he had asked to be placed on him suddenly became something frightening and he screamed (in his quiet voice) to have me remove it. At one point in the middle of the night, he begged me, "Don't put electricity on me!"  He even said his hands hurt and he itched all over, so I could not even give him my normal, foundational comfort in which I hold his tremoring hands tight and still until he falls asleep. I couldn't touch him. We tried all the PRNs at our disposal and the best result we would get would be about one more hour of sleep before he woke again in loud distress.  

At Wednesday morning Rounds, the team came up with new medication adjustments upward to counteract withdrawals and Plans A, B, C, and D, all of which involved making no further reductions to anything today. So far, it is working beautifully, but I will save that update for Day 57's entry.