Day 70: Daddy Gets to Hold his Son

Duplicated on our CaringBridge site for permanent record here.

January 26, 2021, written by Mama

70 days in the hospital: 63 in PICU, 7 in the Oncology ward

Thank you for the prayers! Thomas passed his barium swallow study with flying colors. 

As an aside, I noted that when it was time to go to the third floor, Transport was called to walk with Thomas and me. A doctor did not accompany us, not even any nurses; we did not bring Thomas's code sheets, nor any resuscitation equipment. It dawned on me that that indicates they do not have concern that Thomas is actually going to die in the hallways along the way. Thomas has come so far!

The Surgical Team has cleared Thomas for "clear liquids": that includes juices (apple juice, lemonade), broth (like chicken soup with solids strained out), Popsicle, lollipop, and Jell-O. And the amounts we're talking about are like, one ounce. This was a blow to Thomas who thought we were going to come back from the swallow study and order him a tray of food for lunch.

Surgery wants to go "very slowly" with Thomas trying solids. They need to see that he can actually digest these clear liquids before he would be approved for "full liquids" (e.g., milk, ice cream). After full liquids, he would be approved for purees (apple sauce, yogurt) and finally certain solids (which I'm going to guess is going to start with something like a graham cracker, not the bacon, meatballs, and broccoli that Thomas keeps asking about). Between each phase, Surgery wants us to wait about two days.

This protracted process is going to require some repeated conversations to help Thomas psychologically. Right before leaving for the Swallow Study, he said that when we got back he wanted us to order him his lunch tray. I told him then that there are things we know and things we don't know, but I knew he was not going to be allowed to have a lunch tray that soon. After we left the Swallow Study, he asked if maybe he can have solids "tomorrow." 

He is actually starting to focus a lot on food. He tells me he wants to watch me eating my meal trays because "it reminds me of food and I want to be reminded of food." He has begun conversing with anyone who will talk to him about "what are your favorite foods" and "these are my favorite foods." When doctors came by to chat with him after the Swallow Study, someone asked what he was thinking about and he replied, "Bacon." When Daddy came for an evening visit, Thomas said something like, "Let's talk about food." It is poignant to watch and I don't know the best way to handle it. He is not crying at all, hasn't cried in a couple of days, but clearly he is focusing on food a lot. I just try to keep an open line of communication.

After forcing this boy full of energy to take a minimal one-hour nap--"I'm not tired! I'm going to stay awake!"--he enjoyed an hour-long visit making art with his favorite Miss Hailey.

Following was an hour with Physical Therapy in which we put him in the Magic Standing Table and took him for a "walk" around the ward, ending in a Family Room where we played air hockey and looked out at the views.

His circulation needs time to improve. For example, after he returns from an hour in the standing table, his feet are cold and swollen significantly. In fact, he wants heavy blankets all the time and sometimes wears his winter hat throughout the day.

At 4:00 we transferred him into my arms on the couch and there he stayed until Daddy arrived at 6:00. We enjoyed watching some Mr. Rogers together, chitchatting, and even having a 30-minute phone call with his Aunt. How recently could he speak only a couple of sentences at a time and now he can speak consistently back and forth for half an hour?

Daddy showed up and now it was finally his turn to hold his boy (for another half hour). Even Thomas being able to withstand being held in a lap for two and a half hours shows increasing endurance.

Today was only our seventh day in Heme-Onc and the Attending at Rounds launched the conversation, What Will It Take to Discharge Thomas . . . whether it be to In-Patient Rehab or to Home?

1. Get his chest tube removed. Surgery thinks it will be ready in one to two days.

2. Get him up to full-volume and full-calorie J tube feeds (50 mL per hour at 30 calories per mL for 24/7 continuous feeding). He would then stop receiving TPN. This will be accomplished in maybe four days.

3. Switch all of Thomas's many medications (maybe 15?) to enteral versions, no more IV medications. The Pharmacist began making those switches today and all the  changes will probably be done by the end of tomorrow.

This all sounds wonderful and heartening, which it is. However, frankly, it leaves me scared in combination with the In-Patient Rehab representative having a third consultation with us and saying repeatedly that Thomas may not qualify for rehab. He may "not need it" because he will be "doing so well" and simply get to go home and be cared for by me, who will then take him to outpatient rehab 3-5 days per week. She could see that Thomas will probably meet all his medical goals within the week . . . "And then we'll have the weekend . . . and then maybe Thomas will go home!" 

So now I'm facing going home with a child who cannot roll over, cannot sit up, cannot stand, cannot walk, cannot transfer himself, and cannot manage any of his bathroom needs (nor even be sat on a toilet and held in place because he is too weak). He will be fully tube fed (requiring changing his feed bag six times per 24 hours), not eating any solids yet, and then also have no in-hospital supervision while learning how to eat solids (so he may only practice when he is at speech therapy a few times weekly???). He cannot lift something even as heavy as my cell phone. He is now strong enough to lift his feet (only) off the bed maybe two inches while I dress him. It takes three adults to transfer Thomas into his wheelchair and we have to lift him using a chux pad so he does not experience pain. He is experiencing a neurological condition (known and expected) that makes much of his body extremely hypersensitive to pain, such that if you so much as rub his back, he bursts into tears. Next week he will still be on at least 10 medications (given many times daily, around the clock and throughout the night), three of them narcotics whose daily weaning schedule I would be managing myself.

But after this weekend, he might be doing "so well" that he can go home?!

I get to face the reality of doing all of that care while my husband has returned to working (thank God he still has a job and a wonderful employer), I have to resume teaching homeschool, caring for five other children, and managing a home, plus cooking meals.

Now that Thomas is turning a corner and becoming so much more stable, I can stop living every moment just hoping he will survive . . . and now I can give more space to grieve what he has lost permanently. I can now start facing and fearing what caring for this special needs child might involve. I can now start remembering that Thomas actually has cancer and his scans in two weeks will tell us whether it is still present. Even then, if he has No Evidence of Disease, now we get to start living the next years checking every three months to see if it has relapsed and knowing he can't have chemotherapy if it does.

Now I get to start learning what it means to experience widely varying emotions in the same moment and know that they are all legitimate simultaneously . . . "and," not "but." I am relieved and overjoyed and scared and worried and angry. I get to start discovering our entirely newly transformed family as we've gone through this experience. I get to learn to rely on God in a whole new, more intimate way.