Day 74: Feeling Brighter and Chatting It Up

Duplicated on our CaringBridge site for permanent record here.

January 30, 2021, written by Mama

74 days in the hospital: 63 in PICU, 11 in the Oncology ward

 

Last night, way past bedtime, and after sleeping all day, Thomas woke up.

While the timing was not the most convenient for Mama, it was very nice to see his perky self, responding to both a dose of Tylenol, stress dosing of hydrocortisone, and the massive antibiotics they put him back on.

He has long declared he will be an artist when he grows up, so, true to form, he had to do his art late at night. He drew a sea turtle . . . and note the whimsical ocean bubbles on the word "SEA."

Thomas feeling better does not necessarily mean he is better. They did a second chest X ray for the day, this one at 8:00 p.m., and it showed the pleural effusion had gotten worse even with medical management. Overnight I would watch his oxygen sat down into the high 80s. My heart is still in PICU where nurses sat at my glass door all day long, watching his monitor like a hawk, so it is foreign to me that now (1) I need to be educated enough to understand the numbers on the monitor and (2) pick up the phone to call the nurses to give them a heads up. That feels really foreign. After I called them so many times, the nurses set their monitors out at the main nurse's desk to blare an alarm to them if his oxygen went below 92.

Likely Thomas has two issues going on, but the matter is muddy. He definitely has a pleural effusion on the right side, so the Surgical Team and Heme-Onc team are discussing whether to try to manage this surgically or medically, and we parents weigh in on the matter as well. It does seem likely that the last remaining chest tube was pulled too soon. Second, Thomas may well have an infection, but we will know when and if his cultures start to grow something. In the meanwhile, he could have that infection, but be feeling much better because of the hydrocortisone and antibiotics. It is alarming and it is not lost on us parents that he has been on mega-dose antibiotics for two and a half months, and the few times he briefly came off them for a day or two, he suddenly presented with an infection.

The morning dawned beautifully. Thomas had to be NPO again for about 9 hours while everyone decided whether he would have surgery today, but that was put on hold, likely till Monday.

Thomas inquired about the bathrobe he had been given for Christmas and decided today was the day to try it on. "Mama, this might not be big news to you, but it is big news to me!" I think he looks positively dapper. Later he called home on video call to his siblings in order to show them all the details of his new bathrobe.

The below photo is to show that Thomas sat up on his own--from a 30-degree bed angle--while he was reaching for something. He is growing stronger!

When Surgery finally declared Thomas would not have surgery today, so he was free to eat his newly advanced level of "full liquids," he burst into clapping and cheers. He wanted to try ice cream first. Lest anyone think we went hog wild, I calculated how much sugar was in the half-cup serving and his limit of 5 grams sugar meant he got to eat one-third of the half-cup. He was completely satisfied and actually stopped himself before he reached his limit.

Speaking of grams and limitations, on Thursday I met with two dieticians on the team for the first time to discuss the general guidelines Thomas will be starting with. All of his caring for him are going to learn about his body's specific abilities and limitations as he takes more by mouth, but even learning his general limitations was overwhelming and I did cry some at the meeting. This is a profound change. It is a lifelong change. However, I grab myself and remind myself that if Thomas has the privilege of having a lifelong, profound limitation of foods, it is because he has the privilege of having survived and blessed us with his joyful presence.

Throughout Saturday, Thomas was emotionally labile, bursting into tears if he was poignantly touched by something tender, or if he got too excited about something wonderful, if he felt angry at me, or if he was sad. It was befuddling, then humorous, then not so fun to manage anymore. My husband put two-and-two together that Thomas has been put back on stress dosing of hydrocortisone, and this after having been on this steroid for two and a half months. No wonder he was an emotional lightening rod today!

Anyone who knew Thomas in real life before all this knows that Thomas likes to talk, especially to and with adults. On clinic days, he loved the opportunity to see adults who would talk to him and listen to him go on at such great length. Now that he is truly awake and no longer sedated here in the hospital, in one sense, he's like a kid in a candy store. All day long, adults troop through his room to see him or take care of him, everyone of them somebody he can converse with about their pets, what pet he's going to get some day, favorite foods (and how do you prepare that dish?), how he has a similar outfit as the one the doctor is wearing, what kind of car you drive, and how exactly do you sell a car and buy a new one? Oh, and the medical questions! He can discourse on a variety of medical topics now.

Speaking of medical topics, today was the third time Thomas and I discussed the surgery on his stomach. He asked me to "tell him about what happened" once again. I did so slowly and sweetly, before asking if he has any questions. All three times he has answered, "No," and all three times I've told him that he may ask us any questions anytime.

Dad came for a visit, much to Tom's delight, so I went home. I will just say that I am so grateful when I happen to be home when a meal is being delivered to us because I can still barely hold my emotions and thoughts together when I am at home and away from Thomas. I feel like a fish out of water and I feel overwhelmed by seeing all the tasks I "have" to do. Having a dinner delivered, like one was tonight, makes a huge difference.

That's the update for the day, written from "my house," as I slipped and described our hospital room to my 14-year-old tonight.