Duplicated on our CaringBridge site for permanent record here.
St. Patrick's Day, March 17, 2021, written by Mama
120 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 14 back in the Oncology ward.
At home, the children had a little St. Patrick's breakfast, festive with shamrocks and Panera bagels I brought to them.
Thomas watched a video about St. Patrick with his dad and then I read to him a saint book about the same.
Entirely coincidentally, Thomas drew a picture of Spider Man this morning. Humorously, he has had no exposure to super heroes in comic book, television, or movie form . . . only in the stickers of super heroes he is given at the hospital.
So imagine his and our shock when today turned out to be window cleaning day here at the children's hospital and the window cleaners were dressed like Spider Man and Super Man!
And, yes, even 11 stories up in the air, social distancing 6+ feet apart, wind blowing briskly in the air, with international studies showing virtually zero transmission of COVID occurring outdoors (except for places like "outdoor concerts with thousands of people crammed closely together"--sorry, doesn't count), our super heroes still must wear a mask against COVID . . . because SCIENCE!
Later when Chris departed for home, he spotted all four super heroes on break, feet on the earth like the rest of us.
Today Thomas enjoyed doing some Kindergarten with me, spending an hour in the play room where we did art and watched a great nature show, and listening to me start reading him his first chapter book, The Boxcar Children. I love the transition from picture books to chapter books and The Boxcar Children bridges that gap so well.
Medical Updates
After a final ultrasound to check for unwanted fluid pooling, Thomas finally had his JP drain removed! This surgical drain has been inside of him for approximately three months and we cannot tell you how happy we are to have it removed. Dr. B---- really does think all will be well, although of course I've been given the signs to watch for trouble overnight. This should end the chapter of concern over an uncontrolled pancreatic fistula! That is a big hurdle.
Thomas experienced two more periods of bad withdrawal symptoms, so, after Mama and Daddy conferring with Palliative Care, we requested to abandon the use of a clonidine patch and return to oral clonidine. Patches have not been used much or well studied in children, and they can vary (too much for my comfort) in their distribution of medication based on how new or old the patch is, how much subcutaneous fat the person has, and the body heat in that particular spot. Given that Thomas has proven again and again to really surprise the medical teams with how (ridiculously) sensitive his body is to tapering addictive pharmaceuticals, I want to have the micro-control of an oral drug.
Our family thanks all of you for your prayers about the hurdles we faced this day. Thank you to St. Patrick and for the intercession of Fr. Kapaun and Fr. Henry.
Better Spirits
Thomas was distinctly perkier today . . . and I have no idea why! He has been more and more sad for weeks and he has been increasingly sleeping, many days taking four naps, plus sleeping 12 hours overnight. Today he chatted in an animated way with his siblings over video call this morning. He laughed! While he still is refusing to speak to hospital staff, he talked to me quietly throughout the entire day. Then after his JP drain was pulled around 6:00 p.m., Thomas actually requested we do a video call home so he could tell his siblings. This is coming from the kid who hasn't been talking to his siblings over video time for a couple of weeks. He even showed his belly over video to his brothers!
My mother's heart is relaxing into this respite: just embracing with gratitude one day of seeing my boy a little bit more lively and a little bit more happy. I have no idea what tomorrow will bring, but today was a balm to my soul.
Tomorrow's Plans
If Thomas has an uneventful overnight, then tomorrow Dr. B--- will try to schedule the contrast study of Thomas's bowels. This is a big, big, big deal.
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