Sunday, January 24, 2021

Day 68: Many Fun Milestones

Duplicated on our CaringBridge site for permanent record here.

January 23, 2021, written by Mama

68 days in the hospital: 63 in PICU, 5 in the Oncology ward

Only five days into our stay on the 11th floor and the sweet Oncology nurses are remarking at how smart Thomas is. His personality remains very muted, like he is a little boy on 10% "expression," but his intelligent little self shines through anyway!

This morning when a nurse was here taking his vitals, I took that moment of a five-minute babysitter to go get my cup of coffee in the parents' lounge. When I came back, the nurse handed me this note and said, "Thomas informed me, 'You should write down all my numbers. Mama will want to know them.'" Just how long this five-year-old has been silently watching me as I grilled nurses for months on every lab number remains a mystery, but he's right, I want all the numbers!

(Speaking of numbers, Thomas's monitor shows only two numbers now on a big black screen: his oxygenation level and his pulse. Even the little electrical stickers have been removed from his chest. ("We don't need those anymore and they just get in the way.") They check his temperature and blood pressure every four hours only. Blood labs are done only twice weekly (not four times daily). I cannot yet reconcile myself with the fact that Thomas must be well enough that we do not need to keep such a close eye.)

Then later, Thomas corrected a nurse who had forgotten he needed to wear his mask because she was doing a sterile procedure. A "shortcut" way for a layperson to know that he needs to put on a mask is if he sees the nurse donning sterile gloves (which look different than standard gloves). The nurse was changing caps on Thomas's central line (which is an infection risk) and Thomas spoke up, "Excuse me, I need you to put my mask on." 

The staff love, love, loves him wherever he goes.

We had a day full of little milestones!

Mama did some OT with Thomas, helping him sit up on his own and having him do a puzzle, asking him to use his left and right hands to cross midline.

Then a certain young man inquired when he could wear an outfit again. After telling him I did not think that the time was right, I asked the nurse (just to back up my negative), yet she gave an enthusiastic thumbs up. "If he wants to wear clothes, he gets to wear clothes!" Our little boy can't physically smile too big yet, but that is a Big Grin as he shows off his penguin pajamas! (Milestone!)

Then Daddy brought him his very own brush, and several times today he brushed his own hair, just like a big boy. (Milestone!)

A little medical bit of info we inquired about at Rounds today: Thomas has a "moon face" right now (as the side effect is called), as well as some hirsutism (hair growth on parts of the body normally without hair): he has sideburns down to his jaw, and extra hair on his forehead and back. These are side effects of the hydrocortisone he has been on for two months to help compensate for his loss of adrenal gland. While he is currently slowly weaning down from the hydrocortisone under the supervision of Endocrinology, the doctors suspect these two side effects will disappear only months after being entirely weaned from the steroid. That's okay, we think Tom is pretty cute regardless!

Another milestone: Daddy spent the whole daytime with Thomas while I spent my first daytime at home. Heretofore, my visits home were either around 5:00ish for dinner and bedtime, or I'd show up at 9:00ish after people were asleep just to spend the night and depart first thing. Today I was home for six daytime hours.

Yet one more milestone: On the way home, I walked into a grocery store to buy shampoo. My husband and I think this might actually be my first time shopping in a store in person since last March (almost ten months). It is astonishing for me to think about. How am I so sheltered, so ossified? When COVID hit the news last March and lockdowns began, nobody knew what on earth to think. I remember the last time I shopped, it was at a CVS in March and I was both really scared of this mysterious disease and defiant, like I was still going to shop anyway! After that, we got scared for a while and designated Chris as our family shopper when something had to be done in person. (Remember, this was when crazy commercials were coming out of Europe about how everyone should wipe down every single grocery item with bleach before bringing it into the house, and maybe leave the daily mail sitting for a few days before bringing it in so any germs could die.) I'd already generally used online shopping for a decade, so I just continued with that while no longer running personal errands. Then our COVID concern started to lesson right when Thomas was diagnosed in June, so I ended up keeping myself and the littlest three boys home from everything since then to avoid any illnesses coming into the house. As I said for months, "The only place I ever go is the hospital." And then here I've been in said hospital for more than two months straight. So that, folks, is how you go nearly 10 months without ever stepping foot into a store. The experience shopping today was emotionally surreal and not in a good way.

Milestones don't stop there: I went on my first neighborhood walk in two months! While in the hospital, I've walked once for 30 minutes on the rooftop garden and walked once for 15 minutes along the hospital creek: that's it! One can kinda tell by looking at me. Sigh. Anyway, we walked a mile in the lovely weather. (Why aren't I skinny yet?)

I wish I could say that being home during the daytime was wonderful and relaxed, but I think only fellow parents traumatized by extended PICU stays (and maybe military parents) would understand. Walking back into the normal home where I don't fit in is so hard, it's so panic-inducing, so inspiring of Crazy Time Thoughts. I'm so ill-equipped to handle any of the normal goings-on in a home right now. 

Milestone: I cooked an actual dinner start to finish for my family. First time in more than two months.

I came back to the hospital around 6:00 to a boy who had a good father-son day. I gave Thomas the red-tinted telescope made for him by his brother Joseph (8) . . .

. . . and the pair of slippers sewn for him, as well as the sleeping bag sewn for Sloth by Margaret (9).

I also gave him a new toothbrush that Speech Therapy had asked me to buy so that Thomas can start learning how to brush his own teeth again. (Milestone!)

Weekends are very quiet in the hospital, when there is lower staffing, and all the non-essential therapists are not here. Tomorrow I can expect the string of visiting doctors and the four daily therapy visits again.

Specific prayer request: It is possible Thomas could have his Swallow Study maybe even tomorrow, and certainly within days. Please pray that it occurs as soon as possible and that he passes so that our precious and hungry boy can put food in his mouth for the first time since November 16 (as he fasted 24 hours before his surgery date).

Saturday, January 23, 2021

Day 67: Thomas Resumes his Art

Duplicated on our CaringBridge site for permanent record here.

January 23, 2021, written by Mama

67 days in the hospital: 63 in PICU, 4 in the Oncology ward


Since the New Year, I have been struck by a meditation shared with me by a friend from the spiritual book she was reading:

"You think the whole of a new year is before you. It is not. Only this moment is yours. Make this moment holy, and each moment, one at a time as you receive it from God to live, and you will find that that is all it takes to become the saint God expects you to be, for sanctity consists in doing God’s will one moment at a time.

"New Year’s Resolution: I want to do what God asks of me NOW."

I feel I have failed this so many times in the last months when I was living moment to moment on a fine line very close between Thomas's life and Thomas's death: did I make those moments holy? Much of it is truly a blur to me, like trying to remember a nightmare one had and remembering only the worst flashes and moments. How many opportunities I had to do God's will in just one moment, yet I don't know how well I did that. I will try to do better.

Fullness of Time

Just when I think Thomas's care is already a full-time job, I come to more of a full understanding. Today I began learning how to use his J tube and Dad and I began realizing that Thomas's emotional and psychological care is requiring much more from us with every day. Just today, I came back to the hospital before 8:00 a.m, Chris expecting to depart soon after, but he stayed till early afternoon because Thomas's emotional distress needed two parents to manage. One day all of this hospital staff will be gone, our nanny will be gone, Chris will be back to full-time work . . . and it will be me doing Thomas's care.

Learning J Tube Management

Our daytime nurse realized it would be a great time for me to start managing Thomas's J tube. I am thrilled because it has been anxiety-producing to think of my going home while still very much a novice, so I'd like to do this work with nurse supervision for as many weeks as we are here. She taught me how to fill a new bag, set the settings on the pump, and how to put in all his medications, followed by a flush. The nurses are correct when they tell me that they will repeatedly instruct me to clamp the line before opening the cap, but it is still going to require making that mistake a few times and having formula spurt out on me before I learn the lesson!

Big Emotions and Thoughts

Thomas weaning off more and more medications means he is awake for more duration, more alert, more "with it." As much as I thought he was "awake!" at various earlier points, I can now look way back and see he was barely rising up out of the sea of sedation, poking up his head to take a breath, so to speak, but not nearly fully conscious. Now I'm watching him and wondering what it will be like as he comes off these medications over the following weeks or months. For example, he still has a flat affect almost all the time. He will smile (small) when we request it for a picture. I have seen him three times crack a smile spontaneously when his dad walked in the room and last night he smiled gently at the nurse making a joke, the very first glimpse of return of his sense of humor. Then today was a new milestone: He woke from his afternoon nap and gave me a spontaneous smile, slow like the dawn . . . the first for his Mama.

Thomas is experiencing grief and we are having to help him through it numerous times per day. Once when a new therapist came into the room, Thomas told me that he wanted to tell the therapist what was wrong and not for me to tell her. He explained so clearly, "One, I want to go home. Two, I am hungry and want to eat food in my mouth!"

At one point as he wept today, I leaned over him in bed, as I often do, and put my face squished right on his head and I cradled him. After a while of his weeping--as it lasts for many minutes--I stood up and he said, "No! Stay close to me! Just like that!" 

Often I try to give him words and use reason, and other times I just hold him and affirm his feelings. We talk about how he is getting stronger every day. He needs to be strong enough that it is safe to go home. Everyone here is helping him to get strong because we all want him to be able to go home.

Thomas is hungry now. I presumed that had to be psychological since he is getting precisely the right calories and nutrition that his body needs through TPN and formula. However, I asked the doctor and was told no, he really is hungry. The hunger is a healthy response to his GI tract being stimulated by the formula and it is real even though Thomas receives enough calories. This is a sorrowful truth since he may not yet eat food by mouth.

We are preparing Thomas for his swallow study. He understands that the doctors need him to take a test to make sure it is safe for him to swallow and afterward he will be allowed to try swallowing food. The surgeon mentioned first foods of applesauce and yogurt, to which Thomas said, "I want a sandwich!" We promised him that a sandwich would come in time.

Thomas, the Artist

Today Thomas got to be placed in his chair (a detail-oriented process that takes 15 minutes) to travel to the play room down the hall--available only for one child at a time, but we are thrilled it is available at all under COVID restrictions. Thomas asked to do some art and put his parents and the Child Life Art Therapist in awe of his fine motor skills returning like they are.

This mountain landscape was entirely his vision and execution.

I was curious if Thomas remembers how to write his name . . . and the answer is affirmative.

A smiling train . . .

Steps Along the Way To Going Home

  • Step by step, wean down off of pain and sedation drugs (Methadone, Ativan, Clonidine). Depending on how long we are here, he might go home while still on Methadone (an oral version). If Thomas gets into the Rehab program, they will likely switch these IV medications to oral versions in order to make physically moving much easier.
  • Get his chest tube removed (maybe within days). Make sure pleural effusions are really gone.
  • Jan. 27: full abdominal ultrasound scheduled to look for pockets of fluid
  • Have his swallow study and pass it (maybe early next week).
  • Start trying to eat foods by mouth. Go through a long process with Speech Therapy to learn how to eat safely. Work closely with Nutrition to learn what his body can handle and what it needs nutritionally. This work will be ongoing for a long time, way beyond when we go home.
  • Meanwhile, continue increasing his J tube feedings until they reach goal (around 50 mL/hour), while titrating down on his TPN nutrition. This may be achieved within this week.
  • Continue 5x/weekly PT, OT, ST, along with frequent Child Life visits.
  • Prayer request: Get Thomas into the In-Patient Rehab program, which will mean moving to the 4th floor. I do not know how physically strong Thomas needs to be to be released to home. We certainly want him to be sitting up, transferring, and walking independently, but we don't know what the minimum requirements are.
  • Early February: MIBG and CT scan are scheduled for three months since last chemotherapy to see whether or not Thomas has gained the status of "No Evidence of Disease." Prayer request that he is N.E.D., especially since the oncologist has said that chemotherapy is not in his future.
  • Throughout all of this, the entire nervous system of Thomas's reconstructed GI system has to learn to communicate together again. The biggest, most important nerves have been severed and things sewn back together. His GI tract has to learn how to move in a coordinated way and in the right direction and, in the meanwhile, when it does not, he will experience difficult symptoms like continual retching/emesis. He is on many medications currently to alleviate symptoms, but ultimately he needs (1) to wean off all the pain and sedation meds which affect motility, (2) speech therapy, and (3) time for his GI system to learn how to function again.

Friday, January 22, 2021

Day 66: Out of Bed and Out of Doors!

Duplicated on our CaringBridge site for permanent record here.

January 22, 2021, written by Mama

Fair warning: I took several videos today of the quality I call "grandparent videos," meaning that probably only fawning grandparents will actually want to watch two minutes of our sweet boy placing puzzles pieces on the tray.

Today, Mama did many activities with Thomas plus he had appointments with Occupational Therapy, Speech Therapy, Art Therapy, Child Life, and Physical Therapy. Keep scrolling because after 66 days, Thomas got to get out of bed and go outside!

For the first time, Thomas can manipulate Woody with one hand and pull the cord with the other hand, all without Mama's help.

Thomas is being able to complete chunky, wooden puzzles.

Thomas was interested in coloring his space book, so I was hunting for something fat and easy for him to grip when he requested the coloring pencils. I didn't want to be discouraging, nor falsely optimistic, so I said, "Well, that's fine to try, honey, but I want you to know that your hands probably cannot stay in the lines and I don't want you to get upset." Well, the child used a perfect pencil grip and stayed inside the lines!

In the biggest news of the day, after 66 days immobilized in bed, Thomas was transferred out of bed and into a chair today! This was a big accomplishment and even just sitting still in the chair (with an abdominal brace and a seat belt) is very fatiguing.

He had no extra energy for a smile, but I asked if he was nervous or scared and he said no . . . "but my legs are cold. I want a blanket and my hat."

While in the chair, we worked on a puzzle and then built some Legos.

Then his Art Therapist showed up and, per Tom's request, he painted a purple octopus. He painted the smiley face, he painted almost all the purple body (staying inside the lines), and only at the end did his hand fatigue, so he asked his therapist to do some team painting in which she finished for him. She cut it out and added the tentacles for him.

After all that fun, plus numerous doctor's examinations, in just three hours, this sweet boy needed a nap! Then Daddy arrived for an afternoon visit just as Child Life showed up to read a book about Sea Creatures. Chris brought me some food and Thomas glimpsed me grabbing a snack, which brought forth a flood of anguish from him. He was crying so hard about wanting to "eat food in my mouth!" He actually did NOT want to converse and he said no, he did NOT want to see the kinds of foods he is receiving (TPN and J tube formula), so what the therapist and I discerned is that he just wanted to cry. I knelt by the bed and cried with him and we just mingled our tears.

Then Physical Therapy showed up and astonished us by suggesting he get back in his chair for a second time that day and this time to go wheeling down the hallways! This time, Thomas took some convincing and he expressed fears showing a lot of vulnerability. He was very afraid of being cold, getting lost, and being outside of his bed. Finally we won him over because Child Life offered to set up a treasure hunt of brand new matchbox cars that he would get to keep up on the rooftop garden, of all places.

This photo is a prized possession for us! Chris and I are together--something that has rarely happened for more than a few minutes in passing--and after 66 days, our sweet boy is under the blue sky in the fresh air.

Our sweet pea felt pretty vulnerable and nervous about the adventure. He requested to get back in his safe bed!

He finished out his day full-to-the-brim wanting to play Doctor with Curious George and I think he is fading fast for bedtime . . . but I will be heading home to see my other chickadees! He and Daddy are going to have a spend-the-night.

Thursday, January 21, 2021

Day 65: First Escape Attempt

Duplicated on our CaringBridge site for permanent record here.

January 21, 2021, written by Mama

It is truly difficult to express how busy it is in a hospital getting one's little person healthy again, but I can express how thankful I am to be tasked with helping . . . because our boy has miraculously survived! Often I eat meals an hour or two late, I might not brush my teeth till lunch, email and text responses are notoriously days to weeks behind, and tasks like placing a grocery order for the family at home (my one "home goal" today) still haven't found a moment. There is a nonstop stream of healthcare providers coming in to help Thomas get healthier and stronger . . . thank you, Jesus.


Today at Occupational Therapy, Thomas sat up independently in bed again, as well as did a lot of leg work. The therapist wants me to remember to be giving the soles of his feet fairly strong pressure throughout the day to get them accustomed to proprioception again in anticipation of when he gets to start learning how to walk. In the meanwhile, OT assembled a very special, fancy wheelchair for Thomas today . . . with plans that he gets to sit in it tomorrow, God willing! Thomas was so overjoyed to see it and said, "I want to get in my chair right now!" I had to tell him no, he would get to do it the next day, and he wept. Of course, it is not lost on me that my boy is barely able to move and is thrilled to have the opportunity to be strapped into a wheelchair: the poignancy is not lost on me, so I try to accept feeling sorrow and joy intermixed.

Speech Therapy let Thomas hold his own cup to drink and brush his own teeth (with a sponge on a stick).

Thomas played with trucks today, had various books read to him, and found and pointed to pictures on pages. A cancer charity sent us a children's Bible, something that, of course, Thomas has at home, but I thought I'd show Thomas this new one. He is absolutely gripped. He's been asking me to read it to him all day. Mama is thrilled.

Escape Attempt

Thomas also attempted to go on an adventure today. I was sitting bedside with the rail down when I saw Thomas straining with all his might to roll over in my direction. He can't actually do that, but he can try. I asked him, "Honey, what are you doing?"

"I am trying to get out of bed and go away from here!"

I smothered him with kisses and told him that his time will come, but if he tried to get out of bed right now, he would fall on the floor and get hurt really badly.

And then I called Daddy and told him that now we may never anymore leave the bedrail down and unguarded!

Ocean Friends

Some of our best pals from the Oncology Clinic stopped by having made an ocean of decorations for Thomas! This whole plan was inspired by his love of Colossal Squids. The various care providers over there each made different sea creatures, decorated them, and wrote encouraging notes to Thomas on them. Apparently there are more coming from care providers who didn't finish them today. They are hung all over Thomas's ceiling for him to enjoy watching. My heart melts!

The Next Question

Thomas hasn't asked any more difficult questions in a week until tonight when absolutely out of the blue he asked, "Mama? When I go home from the hospital, will I be able to eat?"

"Yes, honey, you should be able to eat. The doctors are going to be doing some tests to make sure it is safe for you to swallow food and then you will start learning how to eat again even while we are still here in the hospital. I really look forward to that! Do you look forward to that?"


The Best Visitor

Dad came to visit, so my self-care was to go downstairs for different food. Another self-care today was meeting with the counselor for our weekly appointment. I always schedule a familiar babysitter for Thomas when I do that and today it was his beloved Music Therapist.

Here Thomas is holding his own book with two hands while Dad shines a light on a picture.

Bedtime Prayers

When I pray night prayers by Thomas's hospital bed, I have never expected any participation whatsoever. Tonight he folded his hands perfectly for prayers (and I confess I paused our prayers to snap a picture!). At the end, Thomas carefully and so slowly with his trembling hands made the Sign of the Cross. I could hardly believe what I was seeing both because of the fine motor skills involved and because this was the last subject he was working on in Kindergarten Catechism with me before we came to the hospital. He remembers! He hasn't forgotten!

Sweet Sleep

Once again, sweet boy was allowed to be fast asleep by 7:00 p.m. He set his Sloth in his hands before falling asleep . . . but faithful Sloth stands guard through the night!

Even in just our two days here, Thomas has already shown that when he can sleep a normal 12 hours at night, he can stay awake all morning, take a two-hour nap, and stay awake all afternoon. He couldn't do this in PICU because he was awoken so many times overnight, so he would barely manage to stay awake through the morning and then basically drift in and out of sleep all afternoon and evening, hence experiencing delirium. I am so happy to see our little boy have a regular schedule.

Day 64: First Full Day on Oncology Floor

Duplicated on our CaringBridge site for permanent record here.

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 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

Join me in my tears of joy and relief!

Thomas sitting up with help

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)! 

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 . . . 


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.

Pop-Pops playing accordion by the fire