Duplicated on our CaringBridge site for permanent record here.
Palm Sunday, March 28, 2021, written by Mama
131 days in the hospital
- 63 in PICU
- 28 in the Oncology ward
- 15 at In-Patient Rehab, and
- 25 back in the Oncology ward.
A lovely lady delivered Thomas a wonderful collection of oceanic- and sloth-themed gifts! He had been rather "blah" today, but then began showing eagerness and interest!
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| Painting a ceramic whale |
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| Religious drawing for Palm Sunday |
I'll take advantage of an entirely peaceful day to answer a question that a few friends have asked me to write about lately: How have I been keeping track of medical information all these months?
Emailed Daily Notes
Parents must be ready to write down notes any time a doctor is speaking, and don't be shy about asking them to stop and spell something. Back in PICU, each individual specialty Rounded on us once daily, plus the entire team gathered twice daily to Round as a group. I have since learned that even about ten years ago, while parents were not prohibited, they were not invited to join Rounds and it was not in the hospital culture for them to do so. Through parent advocacy, now parents are invited and expected to be at Rounds. Even if I went home for a few hours, during the two months in PICU, I could count on one hand the times I ever missed Rounds (so, fewer than 5 misses out of about 120 Rounds).
I stood at Rounds with my email open on my phone and I typed notes really fast. As weeks went by, I also learned how to format my notes as I was typing them to make them more useful and I made up my own medical shorthand that I would fill in later. Further, I developed a trick by which I would start a draft email each day with my questions written out ahead of time in order to help me remember to ask them at Rounds when information was flying at me fast and hard.
After Rounds, I went to my laptop, opened the saved draft email, and immediately expanded on all the notes. The information was life-and-death critical at the time, and I also had more time to take notes because Thomas was sedated.
Each day I emailed my Rounds Notes to my husband, once in the morning, and once after night Rounds (between 10:00 and midnight, after which I could finally go to sleep). I created a naming convention for the emails for easy organization.
Then throughout the day, whenever anything of note happened during the day shift, I would reply to that same email and add on more info. It became a long chain of emails for the day shift. I would do the same overnight and create a long chain of emails for the night shift.
It is one goal at the end of all this journey to go back and print out all my raw email notes into a Very Big Binder. These email notes are not the polished summaries I tried to post on CaringBridge. These notes are the raw data and the ones which will probably stun me to read later when I can see in black and white how close death danced with Thomas.
White Boards
Each of these hospital rooms has a giant white board that runs the length of one wall. Once we left PICU, I began using the white boards. I write daily instructions on the white board, as well as questions I want to ask visiting doctors. When Chris takes over and I go home, I write out all the latest practices and instructions for him to take care of Thomas and we discuss them all before I depart.
Care Binder
Once Thomas went to Rehab, the team gave me a Care Binder with tabs to organize the incredible amount of paperwork surrounding Thomas's care and Medicaid, Medicaid CAP/C, Social Security, equipment providers, therapists, and outpatient caregivers.
In the binder, I was instructed to start keeping my own daily log of Thomas's care, which for six weeks has now become a famed log that Thomas's doctors love to look at daily.
Because Thomas's main difficulties since PICU have been nutritional, I realized that just keeping a calorie count was not particularly helpful. We needed a time-stamped log of every bite of food he ate, how he reacted, when he retched, when he had bowel movements and what they were like, plus any health notes of interest (fevers, malaise, medication changes, etc.).
Tracking Information at Home
Now I face a new challenge that I'm still mulling over and I even presented this question on a Facebook group I joined for people on TPN or parents of people on TPN. How will I keep track of this information at home?
Here in the hospital, Thomas doesn't go anywhere, so I keep his binder sitting out all the time and I walk approximately two feet to write down the latest information. Once we are at home in our multi-level, large home and I'm carrying Thomas all over the house and outdoors, and even going places in the car, how will I keep track of his information? Further, I will now have to keep track of even more information because I will be the nurse also, so tracking all the medication and vital signs.
I've decided I really am a paper-and-pencil girl, so I want to buy a small, spiral bound notebook. I want to carry it on my person throughout the day, so I want to buy some kind of cross-body, small purse or tote bag that is just open at the top. I'm still searching around for what I think will be the perfect design. It has to be something I can even be wearing while I, out of shape and weak as I am, am carrying Thomas up and down stairs in my home.
I realize that I could type all my notes into my phone all day, whether into a draft email or Google Docs, but I'm already incredibly tethered to my phone and I really don't want to be opening it what could be fifty times a day to jot notes.
I need to be able to share my information with Thomas's specialists electronically. For example, I'm told that once weekly I will have a phone meeting with Thomas's GI dietician and I will share with her all his nutritional info, his TPN, his J tube feedings, how his bowels are doing, his weight, and so forth.- She can't properly titrate his TPN and J tube feedings without his weekly blood labs and without my notes. Therefore, I think I have settled on first trying charting my paper notes into Google Docs once daily. This would also be when I count his calories and all macronutrients. A Google Docs can be shared as "view only" with anyone I want, so I could email the link to the dietician or any doctor.
When will I chart? I think that night time will already be when I organize Thomas's medications each day. He takes something like 15 medications, numerous of them multiple times daily, during seven different times. What I think I understand is that I will draw up all his meds all at once, so it will be One Huge Pile of capped blunt syringes filled with meds and every one of them labeled by hand. Then all of the meds are ready to be given at those seven different time slots daily. In short, doing that task nightly plus charting does not seem wise.
Therefore, I'm thinking that my first scheduling attempt will be to do daily charting in the afternoons during Quiet Time.
My home schedule will probably look something like this:
6:00 a.m.
- Stop J tube feeds
- Give one med
Serve everyone breakfast
8:00 a.m.: Give many meds
Serve Thomas mid-morning snack
11:00 a.m.: Decrease TPN from full rate to taper rate
12:00 noon
- End TPN
- Give one med
Serve everyone lunch
2:00 p.m.: Give many meds
Serve Thomas mid-afternoon snack
Afternoon: Enter daily charting into Google Docs
Serve everyone dinner
6:00 p.m.
- Start TPN, lipids, and J tube feeds
- Give one med
7:00 p.m.: Increase TPN from taper rate to full rate
8:00 p.m.: Give many meds
Organize 24 hours' worth of medications
12:00 midnight: Give one med
Lest we cry, let's all stop and laugh at the prospect of my also fitting in numerous doctors' appointments, weekly OT and PT, and homeschooling six children into that routine (and my grand dream of dedicating time to reclaiming my own health . . . cue biggest giggles of all).
I'm not sure what God is doing with Thomas's soul, but I believe he is allowing this situation for Thomas's parents and siblings to grow in sanctity. As for myself, I might as well be all in! What else am I going to do? Here we go on a new adventure in trying to achieve holiness!
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