Inauguration Day, January 20, 2021, written by Mama
Already changes are afoot here on the 11th Floor (known as Heme-Onc for short: Hematology and Oncology Disorders)! Thomas's new orders of the day are not simply to Survive (don't die!) but to Rest, Heal, and Grow Strong.
Thank you always for your many gifts and prayers. I try so hard to get back to individuals about gifts they have given our family, but I know I'm delayed and that names fall through the cracks. Just today I finally had time to open my Christmas gifts at home, several of which were from anonymous well-wishers. And thank you for your incredible sacrifices. Just yesterday I learned of a commitment sacrifice a friend had made secretly since Thomas's initial surgery "until he would be released from PICU." I wept in humility when I learned what this daily sacrifice had been. I'm sure there are many of you aiding in God's economy that way and I will both never know the extent of it, nor do I feel my thanks will ever be adequate.
Sleep Hygiene
I was amazed the first morning when nobody came in the room until he awoke around 8:00 a.m. and it was because the nurse turned people away. Then when he went down for nap at noon, I heard the nurse tell another staffer, "Please put a note on his door that nobody is to enter until after 2:00." They are serious around here about letting these sick children rest, something they can afford to allow because the children are not hanging in the balance of life and death.
On our first day here, Thomas, like any regular old five-year-old, got to go to sleep for the night at 7:00 p.m. and as of this writing, he is still asleep, so it looks like he will actually get to sleep twelve hours overnight. This is so good for him!
Even the little things: In PICU, it is the job of the night nurse to give bath and do the daily sheet changes. Well, shift change is at 7:00 and it takes at least an hour to get the handoff on two patients, then read all their orders for the night, so it is 8:00 at the earliest when bath and sheets would begin, but if I were the second patient receiving it, Thomas would get bathed at 11:00 p.m. Here in Heme-Onc, it is the responsibility of day shift to do these things, so he can actually fall asleep right at evening shift change if he needs it.
Rounds
Rounds are done somewhat differently here. In PICU, all the individual providers would come do their individual examinations first, so there was a steady stream from 6:00 a.m. until Rounds: This is when I had my chance to speak one-on-one with specialty providers and really have my concerns or preferences heard. Then the providers would all meet to talk before gathering in Rounds outside our door for final decision-making. Here in Heme-Onc, it seems that I will see people first at Rounds. On our first day here, ten people gathered (and that was with Nutrition and Pharmacy missing, but they will usually be there). Thomas's case was presented and then discussion and decisions ensued. Down in PICU, Rounds would end with a Resident physician summarizing the new plan for the day. Here in Heme-Onc, apparently the parent is asking to summarize the plan for the day to make sure he or she understands. Well, this is just up my alley, since you know I stand there taking tons of notes, and I had the best time giving my very first little summary. After Rounds, there are two more differences: That is when a few of the big providers come into the room to physically examine Thomas. (I've got to say that doing this after Rounds does seem odd to me, but later I'm sure I'll discover their reasoning.) Also, our primary nurse steps into the room and writes down all the highlights of the plan of the day on the family's white board. (This second change is tremendously useful for families.)
The last difference is that Heme-Onc does not even have night rounds. Patients are stable enough generally not to need overnight decision-making by an entire team. I will greatly appreciate this difference because in PICU, I never missed a Rounds so I would stay up, even past midnight, waiting for the team to arrive. Then I'd help with Thomas's several wakings and be up for the day by 6:00ish when the first doctors began entering our room. That is why they warn long-term parents in PICU that they themselves might develop delirium!
Changes Afoot
Many of Thomas's labs are being reduced to twice weekly, his daily X rays for the past two months are being discontinued and ordered only "as needed" based on symptoms. (There were a few days when his lung status was changing so fast he had more than one X ray per day, separated by mere hours.) For months in PICU, Thomas had to have an arterial line so they could know his blood pressure every second, until he graduated to a BP reading every 30 minutes; here in Oncology, he has his BP taken only every 4 hours! His J tube formula feedings are being slowly increased and Nutrition is about to come on board the team in a more active roll. Various tests are in the works that will finally give us the green light to let Thomas try putting food in his mouth.
Sitting Up and Taking Notice
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| Thomas sitting up with help |
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| Thomas sitting up with help |
Physical Therapy and Occupational Therapy are working so well with Thomas. This morning, he tried a new form of sitting up. He was in the center of his bed and not quite crisscross applesauce, but his legs were in a diamond shape as he sat forward, using his two hands as stabilizers on either side of him. The therapist had only one tiny hand bracing the small of his back.
Then she took her hand away.
Readers: Thomas was able to sit up by himself with nobody holding his back at all! He did this for three separate stretches of time (perhaps a couple of minutes each)!
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| Thomas sitting up completely independently |
Then the therapist had him use one hand to cross his midline in repeated different places to pet his stuffed animals; then he would do it with his alternate hand, all the while sitting up independently! This is astonishing! I was left with permission and encouragement to have Thomas sit up several times per day, something I as Simple Old Mama am able to manage safely. I would tell you therapist's hopes and goals for Thomas, but that would break my rule about talking about any possibilities in advance . . .
Retching
Thomas's near continuous retching and needing suction of liver bile as often as every 10 minutes continues. (It does not get charted as emesis unless it actually spills out of his mouth, which is almost impossible for Thomas because of his reconstruction. Therefore, the severity is completely lost in the medical charting because suctioning isn't charted.) I knew it was inevitable that moving floors and teams would result in a "bump in the road" of him not getting treatment as fast while they tried to figure out what was going on. Also, only the nurse in the room actually witnesses the severity, and here the nurse comes in and out instead of sitting outside our glass door all day, so it takes even longer to really believe Mama's description. The only thing Thomas's retching responds to is Thorazine, which is a bit confounding even for the doctors. Thorazine is not typically used outside of PICU (and perhaps the behavioral disorders floor?), so it took a while before the staff tried using his PRN order for Thorazine (a lower dose than he was receiving in PICU). Indeed, it stopped the retching in its tracks at 4:00 a.m. that first overnight and lasted most of 12 hours. Once the team saw the results and got the doctors involved, they agreed he can have Thorazine Q6, which is way better than retching to that severity. Pharmacy concerned that at the dose it is, there are not concerns. PRAISE JESUS FOR CLEARING THE WAY. So Thomas got his second dose and has gone all night without retching once. The night nurse just came to me at 6:00 a.m. when I woke to ask what had happened, it was a miracle, Thomas wasn't retching. I said, "It was the Thorazine yesterday at 5:00 p.m.!"
You can envision my Mama's heart relief if you can think of when one of your own kids has had something like Norovirus and you watched him vomit for a few days, but then consider it around the clock since January 8, 13 days ago. You'd beg for the Thorazine, too.
Changes that bring me delight:
- I can now sneak into our in-room bathroom to take a phone call without waking up Thomas. Back in PICU, the family knew the rule always to text me before calling and regularly I would delay calling them back, even for a few hours, because "I'm being silent for Thomas!"
- There are two catering menus that were always in my PICU, but why would I ever have opened the one labeled PEDIATRIC MENU? I ordered from the ADULT MENU and yearned so much for Mexican food, which I have not eaten in two months. When I arrived in our new room, there was no ADULT MENU at all, so I opened the PEDIATRIC MENU, only to discover entirely different items, all cooked in the same kitchen, including Mexican food! There are really delicious Specials of the Day for each of the three meals, seven days per week--only listed on the Pediatric Menu. Why it is considered that quesadillas, black beans, rice, salsa, and sour cream are "kid food" is beyond me, but this little tiny thing brings such a smile to my face.
- I get to watch excitement out the window! Down below is the parking lot where Atrium is giving COVID vaccinations, so it is very interesting to watch the four lanes of cars looping through orange cones and the five temporary buildings erected, some Army green tents. Seriously, it looks like something out of that movie Outbreak. Then followed a drama when three fire engines and a fire SUV came screaming past the hospital and went around the corner past the parking garage, there to pull over and be seemingly stuck. Meanwhile, I was watching what sure looked like billowing white smoke coming up from a vent in the roof of the parking garage. Was something on fire within the parking garage, perhaps a car? And how would the fire engines gain access when they couldn't possibly fit through the low-roofed garage? I watched as all the cars trying to enter the garage to park were turned away. It was very exciting (because I am that deprived of a view of real life) and I will have to leave you all with the same cliff-hanger I was left with because the doctors began Rounding, so I couldn't keep watching!
Family Trip
Meanwhile back on the home front, we will now share that thanks to a generous gift from Pop-Pops, Chris took the children to meet him for a rental RV camping trip at South Mountain State Park! They went for two overnights, which unexpectedly turned out to be the exact time Thomas and I switched floors, something for which normally Daddy would have wanted to be present!
Our family has been on complete isolation since shortly after Thomas entered PICU and this is a serious strain. Going on a trip so exciting, their first experience in an RV, getting to "camp," and seeing their grandfather was medicine very beneficial to them.
We consider it a Dry Run for when we go as a whole family, something Thomas was desperately wanting to do before his November 18 surgery. We kept this trip entirely secret from Thomas. I did not so much as chat with a single nurse about it for fear they would start talking in front of Tom. He is now very aware and always listening. Just today, Chris was in the room talking on the phone to me (visiting at the house) about a birthday party one of our children got invited to, and won't be able to attend, but Thomas began weeping that he wants to go to a birthday party and wants to go away from the hospital.
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| Pop-Pops playing accordion by the fire |
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