Duplicated on our CaringBridge site for permanent record here.
January 27, 2021, written by Mama
71 days in the hospital: 63 in PICU, 8 in the Oncology ward
Last night I slept at home and guess what? I did not have one panic attack. In the morning, I zipped out at 6:00 a.m. to use a darling Dunkin Donuts gift certificate we were given to surprise our children. (Thank you, friend!)
What unfortunate timing: After Thomas finally had his swallow study and spent one evening being able to drink clear liquids, come midnight he was deemed "NPO": nothing by mouth! He had a long-scheduled full abdominal ultrasound for today, Wednesday, which required him not to have so much as a sip of juice. They turned off his J tube feeds at midnight and he could have nothing but a few sips of water. To make matters worse, he had no official appointment time for the ultrasound, so he just had to wait till they could fit him in. We called everyone we could to ask them to hurry, but it was 3:00 before his ultrasound began. I kept in mind that (1) we're in a children's hospital, so everyone else fasting in line is also a child suffering and (2) we spent two months being the "emergent case" that got an ultrasound within a half hour of needing it, so now it was our turn to wait patiently.
It was a challenging day for him as his five-year-old self simply could not sort out the difference between Surgery's instructions (clear liquids versus other things) and Infectious Disease's instructions (nothing at all by mouth, for right now, but not forever). However, Thomas has always been good at fasting when necessary this entire past year and he proved so again today. I tried to keep him as continually busy as I could.
First, he had an amazing 8:00 a.m. Physical Therapy session in which the therapist was almost in tears of joy, seeing the huge leaps and bounds Thomas is making.
Then he and I played Magic Clay for a while . . .
. . . before Occupational Therapy came by and did art with him. Then OT gave him an activity in which little medical caps (red thingies) get buried inside very stiff putty which he has to tear apart to find the treasures.
Child Life also played with Thomas for an hour, including responding to his questions about his J Tube by going to get a real J Tube identical to his and showing him all about how it works.
Amidst all of this, probably four different specialty teams of doctors came by to visit and examine Thomas just in the morning alone.
Thomas received a new, handmade blanket today from a friend of mine, a dear lady who lost her son to cancer. Thomas is chilly all the time and it is one of his favorite things to get to choose his blanket throughout the day. Notice that Thomas's smile is getting bigger and bigger as he weans off more medications . . .
By then it was time for what we are now having to call Quiet Time because Thomas is not passing out with exhaustion into a nap. However, Thomas informed me for the third day in a row, "I am not tired and I won't go to sleep!"
"That's fine. But this is still Quiet Time, just like at home. You may have stuffed animals to play with and books to look at. You don't have to fall asleep. I am going to have my own Quiet Time over here and you and I are not going to talk." Within five minutes . . .
After nap and the ultrasound completion at nearly 4:00, Thomas was so happy when his J tube feedings resumed and he was able to start sipping broth, sucking a lollipop, and drinking juice! Speech Therapy happened to arrive right at that moment for their appointment with him, during which he fed himself his own chicken broth.
Then a momentous milestone occurred: Thomas's orders were changed to Clear Liquids in the Grand Computer in the Sky so for dinner he was allowed to order his very own tray for Guest Services. It was incredibly important to him that he had his own tray, not just that I order some juice on my tray. When the trays arrived, he was so proud and he kept very close to him the little receipt that arrived on his tray showing his very own name and a list of his liquids.
It was such a big deal that he had me do a video call home so he could show his Biggest Brother John his tray.
Then he said he wanted the tray in his lap. These trays are very big and heavy, and Tom's "foods" were all cups of liquid, sloshing about, so I wasn't about to balance such a tray on his bumpy lap in a bed. I tried reason, I tried everything, and Thomas scowled his biggest scowl. He raised his voice as loud as he could (which was quiet): "I can be more serious and more angry than you and Daddy!" This he repeated several times to make sure I understood just how serious and angry he can be.
I came up with a way to rescue the situation: I put his red art tray across his lap and the heavy eating tray atop that.
Meanwhile, he admonished me, "Don't eat! Don't eat yet! We are going to eat together." This pierced my heart because I had not even considered the camaraderie, the community of eating together that has been lost all this time. In our family at home, we do gather and sit together for all three meals: even if we might be eating different leftovers or sandwiches for lunch, there are no drive-by meals, people eating at random times in our family. We eat together. Thomas wanted us to eat together and this meant a lot to him.
For posterity and my records, I will note here that today was the day I began explaining to Thomas his new anatomy in very gentle, extremely simplistic language: the first of many conversations to come.
Before bed, Thomas wanted to watch an episode of Mr. Rogers. (He really has very little time for television here because they keep him so busy Getting Strong.) I had noticed a few times today that he was humming and singing to himself, which is a new milestone. I was able to unobtrusively film him trying his best to sing along to Mr. Rogers in his tiny, halting voice. This moment brings me joy.
Medical Updates
Thomas's TPN and lipids were ended today, as he is now at full volume feeds via his J tube. It will take two more days to concentrate his calories from 24 calories per mL to 30. This means he has nothing flowing through his PICC line.
At midnight, his Cefapim and Flagyl antibiotics will end their 21-day course, so there will be nothing flowing through his port.
Thomas will be entirely disconnected from his IV pole for the first time in 71 days! Meanwhile, his J Tube feedings can always be paused temporarily if he goes in his wheelchair somewhere, so he will be unhooked from all lines. This is truly momentous.
All his remaining medications are oral now except for IV Lasix, which he is weaning from right now. Today his Lasix was dropped from twice daily to once and tomorrow it may end entirely. This will make managing his schedule and getting out of bed for activities much easier, as anyone who has ever experienced "Lasix flooding" will understand.
His chest tube output finally fell below 100 mL in 24 hours, so the Surgical Team is very close to removing it (so he will no longer have a line attached to a huge drain container on the floor). Also, his JP drain which has output steadily for I-don't-even-know-maybe-months-now has slowed this week and today put out 7 . . . as in 7 mL for 12 hours. Not hundreds of mLs per day. Seven. So, maybe that will be removed unexpectedly early? We watch, we wait. (As a humorous, endearing note, I add here that Thomas is special and set apart for Dr. B----. Not even his partners in the surgical practice make decisions about Thomas. When they Round on him, the partners still say, "Well, we run everything about Thomas by Dr. B----. Everything." Dr. B---- is so deeply invested in our son.)
Thomas has now gone more than 48 hours without a single dose of Thorazine and the retching has not recurred. Why did it stop after two weeks of being continuous? Is it done for good? These remain mysteries, but we are so grateful for the respite.
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