Day 116: No Change

Duplicated on our CaringBridge site for permanent record here.

March 13, 2021, written by Mama

116 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 10 back in the Oncology ward.

Following is a brief update on another day of "letting the dust settle" and an emphasis on making no changes.

David (3) calls me when he has ouchies or has a new picture he painted or sometimes, like this morning, to tell me what outfit he was wearing.

Medically, there is no change in Thomas's status. Today's X ray showed the pneumatosis stable when the doctors were hoping it would already have dissipated. However, it has not worsened, so Thomas continues NPO and on antibiotics. He will have daily X rays until this is resolved.

Also, I would like to express gratitude to God, to the doctors, and to whomever invented TPN, as Thomas has officially regained the four pounds he lost during his sickest in Rehab. In fact, he is back up to exactly the weight he was when he entered the hospital on November 18.

Daddy spent the day with his boy. Thomas was quiet in spirit, but laughed a few times, and certainly was physically stronger: he asked to get out of bed, to sit on the bench, to go to the play room. We are grateful for a good day.

Rocket Ship by Thomas

I have a strong memory of the last time Thomas talked to us in an animated fashion: It was on Day 97 of his stay--nearly three weeks ago--and his bright personality had been starting to re-emerge for the first time. That day he talked nonstop to his physical therapist for 30 minutes while his speech therapist listened nearby and belly-laughed about how little Thomas needed speech therapy. Then the speech therapist used up her time just playing with him while he talked to her for another nonstop 30 minutes. My heart was greatly encouraged to see Thomas "coming back," but by the next day his GI symptoms were getting so bad that Thomas receded back into the quiet depths. He now declines almost all video phone calls with his siblings. He talks to me only a little, in a voice quiet enough that I cannot hear him in his bed when I am on the couch, and has for days or a week now been outright refusing to even answer questions of any staff. I apologized on his behalf to one nurse and she said, "Don't worry about it. It looks like he is just totally over this hospital experience. He's done! We see this a lot with patients who are here for a long time."

We want to get him home with his family so badly.