Day 65: First Escape Attempt

Duplicated on our CaringBridge site for permanent record here.

January 21, 2021, written by Mama

It is truly difficult to express how busy it is in a hospital getting one's little person healthy again, but I can express how thankful I am to be tasked with helping . . . because our boy has miraculously survived! Often I eat meals an hour or two late, I might not brush my teeth till lunch, email and text responses are notoriously days to weeks behind, and tasks like placing a grocery order for the family at home (my one "home goal" today) still haven't found a moment. There is a nonstop stream of healthcare providers coming in to help Thomas get healthier and stronger . . . thank you, Jesus.

Therapies

Today at Occupational Therapy, Thomas sat up independently in bed again, as well as did a lot of leg work. The therapist wants me to remember to be giving the soles of his feet fairly strong pressure throughout the day to get them accustomed to proprioception again in anticipation of when he gets to start learning how to walk. In the meanwhile, OT assembled a very special, fancy wheelchair for Thomas today . . . with plans that he gets to sit in it tomorrow, God willing! Thomas was so overjoyed to see it and said, "I want to get in my chair right now!" I had to tell him no, he would get to do it the next day, and he wept. Of course, it is not lost on me that my boy is barely able to move and is thrilled to have the opportunity to be strapped into a wheelchair: the poignancy is not lost on me, so I try to accept feeling sorrow and joy intermixed.

Speech Therapy let Thomas hold his own cup to drink and brush his own teeth (with a sponge on a stick).

Thomas played with trucks today, had various books read to him, and found and pointed to pictures on pages. A cancer charity sent us a children's Bible, something that, of course, Thomas has at home, but I thought I'd show Thomas this new one. He is absolutely gripped. He's been asking me to read it to him all day. Mama is thrilled.

Escape Attempt

Thomas also attempted to go on an adventure today. I was sitting bedside with the rail down when I saw Thomas straining with all his might to roll over in my direction. He can't actually do that, but he can try. I asked him, "Honey, what are you doing?"

"I am trying to get out of bed and go away from here!"

I smothered him with kisses and told him that his time will come, but if he tried to get out of bed right now, he would fall on the floor and get hurt really badly.

And then I called Daddy and told him that now we may never anymore leave the bedrail down and unguarded!

Ocean Friends

Some of our best pals from the Oncology Clinic stopped by having made an ocean of decorations for Thomas! This whole plan was inspired by his love of Colossal Squids. The various care providers over there each made different sea creatures, decorated them, and wrote encouraging notes to Thomas on them. Apparently there are more coming from care providers who didn't finish them today. They are hung all over Thomas's ceiling for him to enjoy watching. My heart melts!

The Next Question

Thomas hasn't asked any more difficult questions in a week until tonight when absolutely out of the blue he asked, "Mama? When I go home from the hospital, will I be able to eat?"

"Yes, honey, you should be able to eat. The doctors are going to be doing some tests to make sure it is safe for you to swallow food and then you will start learning how to eat again even while we are still here in the hospital. I really look forward to that! Do you look forward to that?"

"Yes!"

The Best Visitor

Dad came to visit, so my self-care was to go downstairs for different food. Another self-care today was meeting with the counselor for our weekly appointment. I always schedule a familiar babysitter for Thomas when I do that and today it was his beloved Music Therapist.

Here Thomas is holding his own book with two hands while Dad shines a light on a picture.

Bedtime Prayers

When I pray night prayers by Thomas's hospital bed, I have never expected any participation whatsoever. Tonight he folded his hands perfectly for prayers (and I confess I paused our prayers to snap a picture!). At the end, Thomas carefully and so slowly with his trembling hands made the Sign of the Cross. I could hardly believe what I was seeing both because of the fine motor skills involved and because this was the last subject he was working on in Kindergarten Catechism with me before we came to the hospital. He remembers! He hasn't forgotten!

Sweet Sleep

Once again, sweet boy was allowed to be fast asleep by 7:00 p.m. He set his Sloth in his hands before falling asleep . . . but faithful Sloth stands guard through the night!

Even in just our two days here, Thomas has already shown that when he can sleep a normal 12 hours at night, he can stay awake all morning, take a two-hour nap, and stay awake all afternoon. He couldn't do this in PICU because he was awoken so many times overnight, so he would barely manage to stay awake through the morning and then basically drift in and out of sleep all afternoon and evening, hence experiencing delirium. I am so happy to see our little boy have a regular schedule.