Day 132: Thomas Is Home!

Duplicated on our CaringBridge site for permanent record here.

March 29, 2021, written by Mama

132 days in the hospital

• 63 in PICU
• 28 in the Oncology ward
• 15 at In-Patient Rehab, and 
• 26 back in the Oncology ward.

We departed for the hospital on November 18, anticipating a 5-day stay. After the changeover of a new year, 12 surgeries, 93 units of blood transfusions, and 132 days, Thomas came home.

I have been trying to draft this announcement all day, but while Katherine the writer hopes one day to be able to write beautifully about this day, Katherine the Mama is unable to do so right now. My heart is overflowing with a maelstrom of emotions.

First luggage cart

Second luggage cart

Driving home

Welcome Home sign

The whole family together for the first time in four and a half months!

Siblings

I would like to share a blessing God gave to two women today because--it is too colloquial to say "sometimes God just likes to show off"--but maybe you will get my meaning. Seven years ago, a woman named Margaret whom I barely knew at the time (but whom I have since come to call friend!) experienced tragedy when her young son had a hemorrhagic stroke and spent two months in this very children's hospital. At the time, I signed up to deliver her family a meal and, quite fortuitously, it turned out that I delivered the meal on the day they were discharged to home. 

My friend Margaret now lives out of state, but she still travels back to our state for her son's specialist medical appointments and he just so happened to have an appointment today, March 29. Knowing she would be in town, months ago she signed up to bring my family a meal. In fact, she prayed that she might be the one to deliver our homecoming meal . . . but how could that be possible? As if that would ever happen! 

Apparently God desired to give delight to both of us, and so I want to give glory to Him. In fact, Margaret did provide our homecoming dinner. Who could ever have thought of such symmetry except God?

Tucked into his bed at home

Home

by William Henry Dawson

The house in which one lives is but a shell

Of stone, and wood, and clay with paint spread o'er,

And when sweet stories about home we tell,

We mean not just the house alone, but more.

When one has kissed his loved ones a good-bye,

And for a fortnight travels to and fro,

Returns unto his home the latch to try,

And finds the pesky little thing won't go,

And takes his night key and unlocks the door,

And finds the house as quiet as a mouse—

His wife and babies, just the day before

Had gone—it is not home. It's just a house.

It's then one comes to really understand

The meaning, in its truest sense, of home.

It's then that all the houses in the land,

Builded earth wide and high as heaven's dome,

With floors of gold, and walls of jassamine,

And ceilings all bedecked with jewels rare,

Mantels of pearl, and bric-a-brac thrown in,

Would not be home, with wife and babes not there.

Day 131: A Glimpse at Notetaking and the Routine

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.

Weekends are very quiet at the hospital and, while somewhat boring, we are grateful for quiet instead of emergencies!

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! 

We've had four of our beloved PICU nurses come visit us in the room this weekend. We have filled our quiet day with reading aloud, making art, watching some TV, and traveling down to the cafeteria for our dinner.

Painting a ceramic whale

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!

Day 130: A Day of Many Emotions

Duplicated on our CaringBridge site for permanent record here.

March 27, 2021, written by Mama

130 days in the hospital

• 63 in PICU
• 28 in the Oncology ward
• 15 at In-Patient Rehab, and 
• 24 back in the Oncology ward.

Special Note: I am sorry for the confusion I obviously caused by my last blog post! A number of people contacted me congratulating us on Thomas's intended discharge, which they thought would be the following day. I realize part of my writing was confusing: We have missed discharge dates three times in March so far, and the last one intended was almost two weeks ago. We think Thomas is close, but nothing is official and honestly won't be until the very day of discharge.

Living in Sight of Death

Tonight I am flowing with tears every few minutes as I reflect on the third-this-week very frightening security issue with another family on the floor and on the death of a child on this ward. I won't share the details nearly live time on this public venue, but I will say that a mother's keening after her young child's death is like nothing I've ever heard or ever seen imitated in a Hollywood movie the way it sounds in real life. Living here for four months means I've heard it repeatedly now and it slays my heart. The screams become wordless and primal. The grieving mother today screamed for nearly half an hour while I stood right inside my hospital door crying.

There are saints throughout history who made it a habit to keep a skull near them, perhaps on their work desk, to remind them to meditate upon how death awaits us all. I am not so holy to seek out that mortification, but God is allowing me this meditation right up close. I pray that I actually grow in virtue from this experience.

An Otherwise Quiet Day

Today was a beautiful day. 

I worked very hard at the house to get it ready for Thomas's hoped-for homecoming. I won't bore you with all the details and photos until he actually is home, but we think we are all set for this boy!

Meanwhile, Thomas and his daddy had a nice day. Thomas finished his wind chimes (currently hanging on an IV pole!), rode his tricycle, and made a super hero mask.

I then represented Chris and myself at a baptism: we've been chosen as godparents to a beautiful baby girl! We are so honored by being asked to help in a child's faith as she grows up.

Changes in Babysitting Help

Back at home, this was our beloved babysitter's last day, as her family is (rather unexpectedly to us) moving away. This sweet girl in our homeschooling community approached us in December and asked us if she could simply come and take care of our children as her gift to us. She discerned that God was calling her to this. Miss S---- has earned and merited my complete trust as she filled my shoes at home. She homeschooled the children, ran mealtimes, did our laundry, engaged the children in doing their chores and then some in order to keep the house very orderly, and helped form the children spiritually, as well as bringing much fun, joy, and music sing alongs to our home. A few days ago, she and the kids had a goodbye celebration going bowling and eating at a Mexican restaurant. 

Our children are heartbroken, but we count our blessings for the three undeserved months we had S---- helping us during our most acute need. God provided exactly who we needed during that time.

Monday . . . a new babysitter arrives to help us!

Thank You

Numerous people have sent Thomas sweet gifts this week, for which we are always so grateful. A whole group of people whom we don't even know sent Thomas about 20 handmade cards, which have been so fun to look through. A sweet lady sent him three peg dolls of two priests (Fr. Kapaun and Fr. Henry!) and a little altar boy (Thomas one day!). Today a thoughtful coworker of Chris sent Thomas a darling pair of sloth pajamas, which he is sporting as he sleeps at this moment. 

Please, God, let me be grateful even during fatigue, even during weariness of serving Thomas's needs or "simply" being a mother to all six of our children. Let me always remember, moment by moment, that there are mothers who went home today without their children and are now living a permanence of which I am scared even to contemplate. 

Day 129: Bye Bye, Pain Killers

Duplicated on our CaringBridge site for permanent record here.

March 26, 2021, written by Mama

129 days in the hospital

• 63 in PICU
• 28 in the Oncology ward
• 15 at In-Patient Rehab, and 
• 23 back in the Oncology ward.

*** Special Note to any of our PICU nurse and doctor friends who might be reading this! * * * 

Since we really don't know when we might be discharged, we finally arranged a visit to the PICU this afternoon to thank our caregivers and to let them see the boy whose life they saved. I was awkward and failed to say anything profound. Anyway, we would love for any of the PICU folks to stop by in these coming days to see Thomas while he is still in-patient. He asks for numerous of you by name!

* * * * *

Today I wondered what this sweet boy is going to do when we are home and he no longer gets to wake up and daily start doing his art projects within 15 minutes! Some of us grab a cup o' joe to wake up, but this boy points to his supplies and says, "Mama, let's do some art."

Day 2 of painting the wind chimes

Copying the United States by eye

His pain may, in fact, now be a thing of the past! At last night's six o'clock dose, we dropped down from big league Toradol IV to simple ibuprofen, which we gave at midnight and 6:00 a.m. Then at noon, we did not give any ibuprofen at all to see if his back still hurt . . . but he hasn't complained yet 24 hours later! 

This morning, Thomas did art projects, he asked to sit on the couch for a while, then he requested to ride his tricycle (for the first time in some weeks!), and then we went to the play room to make sun catchers.

After a rest to catch his breath, PT came by and played fishing with him.

Back at home, Daddy installed a wheelchair ramp and then gave Thomas a tour over video call. Thomas was pleased and remarked, "Oh! So that's how I'll get into the house!"

David trying out the ramp

Musings on What to Say

It has been a difficult thing to discern how much to talk with Thomas about going home and how much to keep quiet. It has been brutal on my adult's heart to have at least three discharge dates come and go without our going home, and I have wanted to protect Thomas from those bitter disappointments. However, that choice got taken away when a staff member said in front of Thomas, "If such-and-such happens, Thomas will be discharged tomorrow, and if such-and-such happens, then he will have to stay." Immediately, Thomas began talking to me about details of home that were very important to him but would never have occurred to me to matter. For example, he wanted to know what I would serve for breakfast the first morning. I didn't know what groceries would be in the house, I wasn't sure, but Thomas kept asking until I realized it mattered a lot to him. He wanted to talk through options of where he might sleep, what toy he might play with very first.

One comment that brought me to tears was when he talked aloud to me his thoughts . . . "I can't ride my two-wheeler right now  . . . but I can ride my tricycle. So, when I'm riding outside in the cul-de-sac and I want you to carry me back inside, how will I call to you inside so you hear me? Hhhhhmmm. Maybe you can be sure to send John or Mary or Margaret or Joe outside with me."

Well, one can imagine that I got all teary at our five-year-old still thinking that back home, like when he left for the hospital back in November, he still has his independence to play outside in the street without his parents. Or his mistaken notion that in the immobile, deconditioned state he is in right now that a fellow sibling would be sufficient supervision out in the street while I'm indoors! I wiped away my tears and smiled cheerfully and said, "You know what, honey? For right now, Mama or Daddy will always go outside with you to play." Thomas approved of that idea.

I spoke with the oncology psychologist about things Thomas might face, challenging or wonderful, back at home. I wanted to know how I might help, and also ways I might do harm to his psychology and emotions. I'm opening conversation with him and asking what he thinks, feels, hopes, and worries about "when we get to go home, whenever that is." I'm also broaching some specific topics to get his mind thinking and invite him to participate, like how he might get in and out of the home (that ramp), how he might ride in the car (we will lift him in and out), how Thomas will get up and down the home stairs (he thought we'd install a really big slide!, but I told him we adults would carry him), and we brainstormed some bathroom accessibility issues. I'm trying to balance being inviting without being too "heavy" for a five-year-old.

It is also on my mind that Thomas might have some hidden issues that will present only later. For example, I'm reading a fascinating book entitled, You Can Stop Humming Now: A Doctor's Stories of Life, Death, and In Between by Daniela Lamas, M.D. She is a critical care doctor (an Attending in an adult ICU) and discusses many philosophical issues of medicine. One chapter is on Post Traumatic Stress Disorder experienced by those who experienced delirium during long-term ICU stays, a subject really only beginning to be explored in the last ten years. These patients who suffered ICU delirium laid down those memories as if they really happened, so they can experience PTSD just like a soldier home from traumatic battle. Meanwhile, their medical teams and families often think the patient should just be overjoyed and full of gratitude for having survived a critical illness, when instead the patient may be suffering horrific nightmares, flashbacks, and triggers. Reading of various patients' experience in this book made me ponder about Thomas who certainly experienced more than a month of deep sedation (during which who knows what he was perceiving or experiencing) and then many weeks of ICU delirium, during which I know minimally he was hallucinating, including about scary things like bugs all over the walls.

Also, I've had the oncology team let me know that the incidence of attention problems is much higher among children who received chemotherapy treatment and then I read in this book that those who survived deep sedation in ICU also have increased memory, concentration, and attention difficulties. There is so much for us to watch for and be aware of now.

No one gets a "practice run" for getting their kid through intense medical trauma, the likes of which most of us will never experience. Chris and I so deeply want to support Thomas in every way he needs. No pressure or anything.

Day 128: The Sparkle Is Back

Duplicated on our CaringBridge site for permanent record here.

The Feast of the Annunciation, March 25, 2021, written by Mama

128 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 22 back in the Oncology ward.

Today was one that brought us much joy!

Chris spent the night last night and reported that Thomas's back pain was covered by medication all night (meaning, no breakthrough pain). I arrived in the morning when Thomas had already eaten breakfast, been sitting up doing art for an hour, and was in the midst of a Physical Therapy session!

We had a great video call with Pop-Pops and Uncle Mike who were enjoying breakfast at IHOP.

During Thomas's afternoon break off all his lines, he requested to go for a walk around the hospital, his first time outside the room in at least a week.

The weather was, at that time, really lovely--overcast and 75--so we sat outside. (Now later back in our room, it was exhilarating and a little fearful to watch out of our huge window on the 11th floor as a black cloud came racing toward us, engulfed the hospital, and released a blinding white deluge of rain with lightening flashes uncomfortably close while the weather channel warned that winds were 45+ mph with a "strong tornado watch.")

We noodled our way over to the cafeteria so Thomas could choose some food for himself. Thomas even wheeled his own wheelchair himself, something I don't think I've seen him do since three weeks ago on the Rehab floor. He has so few choices here and it was heartwarming for me to allow him to choose various foods. He carefully carried his prized Lunchables all the way back to our room instead of letting me put it in our bag of food.

Today Thomas has had a sparkle to his personality I can't remember seeing. He hasn't just smiled brightly or laughed once or twice, but it has been going on all day. I have heard him tell jokes repeatedly and initiate playing peek-a-boo with me! My favorite was when I was reading silently on the couch and glanced up to see him spying on me with a spyglass made out of his hand. This is a "Mama joke" because I spy on my kids and then say "I saw you first!" which is totally dumb, but aren't all "family jokes" dumb and loving and familiar?

"I saw you first!"

With Thomas temporarily on no lines whatsoever, I climbed into bed with him and we had the best snuggle time talking quietly about what Thomas thinks and feels about when we finally go home, whenever that is.

Medical Updates

Our boy is C. Diff negative, so our room is off of the enteric precaution we've been under for two days. Yay!

After several days of oxygen in the low 90s, Thomas seems to be back to 100% as of last overnight.

Thomas is presumed to have a fungal infection because the fungal culture from his surgical drain finally grew fungus. Since fungus "takes forever! to grow" and Thomas is at high risk of a fungal infection because he has been on broad spectrum antibiotics for four months, he is being treated for it while they wait to see if serum fungal cultures grow over the next couple of weeks. Thomas has been having fevers Monday through today (Thursday), which might simply be normal post-operative fevers or might be because of a fungal infection.

Toradol may only be taken for five days anyway, plus it is very hard on the kidneys, so tonight we are switching to regular ibuprofen to see if Thomas's pain is low enough to be covered by an OTC medication.

Today was Thomas's first full day eating solid foods (again) and he did amazingly well. Even though he is receiving 100% of his calories from TPN plus he has begun low-rate J tube feedings, he still was hungry for three meals:

• Breakfast: 1/4 pancake, 3 bites sausage, 3 bites potatoes, 10 bites cereal and milk
• Lunch: 80% PBJ plus one PB-cheese cracker
• Dinner: 6 Ritz crackers, 6 Lunchables ham "circles," and 4 large strawberries

While back in Rehab when we were given a planned discharge date of March 6, I received training on Thomas's J tube feedings. Now that we know he will go home on TPN, which is a much bigger deal, I have requested my day nurses start training me. If I did not take this initiative, what would have happened is that I would have received a single 15-minute training session on TPN from Atrium Home Health about 24 hours before discharge. TPN is a big deal because it goes right into a central line to the heart, so doing things in a non-sterile way can lead to a deadly serious infection. I want to be comfortable when we go home instead of having shaky hands and heart palpitations, so I've asked the nurses to start talking me through the procedure twice daily. They did me one better and said I can do it with my own hands each time with their supervision, so that training began today. It took courage for me when the nurse instructed me to "check for blood flow," as that means pulling back on the syringe attached to Thomas's central line such that I'm pulling blood straight out of my little boy's heart. I did it though because that is now going to be my duty twice daily!

Perhaps the most true thing said to us by the doctors way early in PICU and every doctor since is that Thomas would experience "two steps forward, one step back" throughout his journey. I will try to allow myself full joy for a day like today, even though I know there will probably be more bumps.

Day 127: Pain Improving Bit by Bit

Duplicated on our CaringBridge site for permanent record here.

March 24, 2021, written by Mama

127 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 21 back in the Oncology ward.

In the longer arc of Sunday to Wednesday, Thomas's pain is improving, there is no doubt. However, in the snapshot moments, like during a night of many wakings for pain, or when just doing his body care makes him weep, I feel like we are getting nowhere. This morning called for two cups of coffee right away.

On the bright side, after a rough night, Thomas woke and wanted to launch into his artwork right away, which included sitting up, something he could not possibly have done on Monday and only started to do on Tuesday.

Then he requested repeatedly to get out of his bed and into his wheelchair. It was hard for me to let him try because you can just imagine how I felt when only a couple of hours earlier, I couldn't roll him over a few inches without great pain! However, with the Physical Therapist in the room as a second pair of hands, just in case I needed help, we tried it and Thomas was quite pleased! He wanted to work on his stickers, which is serious business when you're five.

He lasted thirty minutes in the chair before declaring, "Mama, sitting up has sucked all the energy out of me. I need to lie down."

What good timing, as his Palliative Care nurse, Miss L----, walked in bearing an ocean-themed blanket she had designed and sewed just for Thomas! I'm telling you, our little boy seems to work his way into the hearts of a lot of the staff.

At one point this morning, after discussing Easter upcoming with his Physical Therapist, Thomas turned to me and asked, "How will I do the Easter egg hunt with my brothers and sisters since I can't move?"

I've been through so much these last four months that nothing much makes me cry these days (or I wouldn't stop crying), but that question did. I couldn't answer him. My boy thinks I know everything--all the answers!--but this time I had to go busy myself in a corner of the room and cry.

I'm going to solve this problem for our boy.

Medical Updates

There are a lot of balls in the air right now. Today we had detailed consultations with Anesthesia, Infectious Diseases, Palliative Care, and Surgery (Dr. B--- in person!). Everyone is working together to try to solve his pain and get his gastrointestinal system working well.

I don't think we are ever going to know exactly what caused this pain crisis. The leading idea is that the epidural (which had to be inserted twice) upset Thomas's muscles and sent them into spasms that have lasted for days, and possibly included nerve inflammation. The Toradol which worked for only three hours at a stretch on Monday was today working four or five hours before running out (and it can't be repeated closer than every six hours). We are going to add into the mix a light muscle relaxant and a small, local lidocaine patch. 

For nutrition, today Thomas was cleared for solid foods. Due to a merely administrative error, his J tube feedings will be beginning tomorrow (later than anticipated).

Courage

I know that children earn their Beads of Courage whether they are courageous or not, but Thomas is courageous so many times a day. Or maybe it is better to characterize him as being at peace. Today he had his port needle changed, as it is once a week, and, as usual, he chatted his way calmly through the procedure. No matter what test, imaging, IV placement, or blood draw we've thrown at him, he has never so much as thrown one tantrum in these four months in the hospital, or his nine months of treatment.

Thomas went into his last surgery calmly, as he has for all the non-emergent surgeries for which he's been awake ahead of time. Today he was asking me how and when his port would one day be removed. I said when Thomas doesn't need it anymore, we will come back to the hospital for "a little procedure," and he said immediately, "Oh, you mean a surgery. Okay, that's fine!" I thought to myself that I had underestimated him again and he really doesn't need much baby talk from us.

Today the Child Life Therapist came by, having fulfilled my request of catching up on Thomas's Beads of Courage for the last two months. Since they far exceed what a string can hold, for now we will be displaying them at home in a pretty Mason jar. I began surfing online for artistic ideas for how to make a permanent and meaningful display of his Beads. I was overcome with choking tears at seeing the ideas and realized I had to put that pursuit away for now. My goal is that maybe by next fall, for his one-year anniversary of this journey, I can create a beautiful way to display his Beads.

Not his whole cancer journey: only the Beads for his hospital stay

 

Chris is getting to spend the night with his dear boy tonight. It is hard on him to have to juggle more of the Outside World responsibilities than I do. He would love to visit Thomas daily. Even on a day when I can't get a smile out of Thomas all day, he lights up big when he sees his Daddy walk in the door.

Day 126: Continuing Pain

Duplicated on our CaringBridge site for permanent record here.

March 23, 2021, written by Mama

126 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 20 back in the Oncology ward.

I have little to report except for Thomas's overnight and day being spent mostly uncomfortable or in a lot of pain.

One improvement for which I am grateful is that Thomas's pain all over seems to have localized down to his back. All of the teams concur in not knowing what is going on. We wonder if some typical and moderate pain response to the epidural was magnified many times over in Thomas, either because of his nerves or his exposure to so many narcotics or maybe even going through withdrawals to Fentanyl after being exposed to it for only three days again. Nerves are funny, funny things.

Now I can touch other parts of Thomas without him screaming, but his lower back hurts tremendously, so he won't move.

Another gift for which I am grateful is that Thomas experienced three hours of wonderful respite today from about 5:30 a.m. to 8:30. His pain was controlled and suddenly he could move. I could do his body care without him weeping. He easily rolled himself side to side. He even sat up once. However, the rest of the day was one mostly of pain.

He is also experiencing a lot of GI distress that is typical after abdominal surgery. He had an abdominal X ray to make sure nothing was awry and it isn't. The only solution is time.

In the meanwhile, I simply tried to be of comfort to Thomas in my limited ability. I read him stories and sat next to his bed while we watched TV shows. I made sticker art with him. I bicycled his legs, held warm packs on his belly, and rubbed his hair. I arranged a video call with his siblings and, while Thomas felt too bad to talk, he liked quietly watching me and his siblings talk together. For a cumulative many hours, he simply wanted me to hold his hand tightly while he moaned.

I doubt I'm ever profound, but I try to be thoughtful in my writing. Yet I keep falling asleep at my computer, even though it is only 7:30 in the evening. Off to bed is all I can do.

Day 125: A Day Spent in Pain

Duplicated on our CaringBridge site for permanent record here.

March 22, 2021, written by Mama

125 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 19 back in the Oncology ward.

The last 24 hours have been tough ones as Thomas experienced what we hoped is only the "setback of a pain problem" and not an actual complication. Time will tell.

When Chris spent Sunday with Thomas, he noticed an increasing sensitivity to touch. He could still accomplish Thomas's body care, but Thomas would protest at sometimes the mildest touches in perfectly normal spots on his body. It was enough that Chris mentioned it to me at "shift change."

I arrived Sunday at 7:00 p.m. by which point Thomas was already asleep. I noticed fairly soon that Thomas's monitor showed wonky numbers: oxygen in the low 90s (when his regular is 99-100%) and a respiration rate bumping up above 50 to try to compensate. Also, Thomas would wake and cry about his back hurting. 

After the monitor alarmed about ten times (and I'm not sure why it blares in here but not out there, as I know the monitors are visible at the nurses' station), I called in the nurse to discuss. She messaged Surgery and the doctor came at midnight, needing to turn on lights full bright to remove the tape (causing screaming pain) and check if the epidural was still placed, which it was. Thomas's lungs sounded clear, but a chest x ray was ordered for the morning to check for pleural effusion.

The night followed with more wakings in pain, and I was so worried about the low oxygen that I only slept from 2:00 to 5:00 (with some wakings in between).

This morning, Chris joined me to sit with Thomas all day. Anesthesia did remove his epidural and the pain only grew worse. The chest x ray ruled out pleural effusion and his blood labs look good. Thomas did spike a fever, so numerous cultures had to be drawn. He also threw up bile voluminously in one episode, more than we've ever seen. The surgeons made him NPO again.

This wasn't a case of the epidural removing pain coverage so now Thomas could feel his incision pain. He has pain all over his body, but particularly his entire back. Just lifting a baby blanket off of him makes him cry. Rubbing his hand comfortingly. Doing body care makes him hurt so bad his body is shaking. He wants to lie completely flat (which isn't good for him). For stretches of this morning, the pain was so bad that his heart rate was hitting 200, his respiratory rate reaching 60, and his oxygen around 90%.

Before removing the epidural, he was given a bolus of narcotics through the epidural, and oxycodone immediately afterward, followed 30 minutes later by Dilaudid (10x more powerful than morphine), and then an hour following morphine itself, at which point Thomas at least calmed down enough to be manageable. He is going into the night on a pain regimen of Dilaudid and Toradol.

No one has solid answers. Everyone hopes this is a "pain problem." Because of Thomas's massive exposure to opioids and benzodiazepines, he requires much more of those drugs to cover pain even now. Where is the pain coming from? His incision? Did the epidural removal assault his back muscles and make them spasm? Is this referred pain from inner organ pain and gas retention?

The team has to be careful not to give too little narcotics because of his tolerance level. However, they also don't want to get him addicted again because it took Thomas about two and a half months to taper down and get off all (but one) of those drugs.

And why is his oxygen still lower-than-normal? Nobody is sure and the best hypothesis is that he has been lying still and flat for three days, breathing shallowly. What he needs to do is sit up vertically and start to move around as best he can, but he can't do that due to the pain. Meanwhile, we are assigned to start having him use his two breathing devices to expand his lungs each hour.

We pray that tonight is easier and that whatever is causing this pain dissipates . . . and soon.

Nature Walk

Meanwhile, below are some heartwarming photos of a nature walk four of the kids took in this beautiful weather today.