Friday Update: Back to School

 

Homeschooling Resumes (Sort of)

Homeschooling started back this week after two weeks off for Holy Week and Easter. (We would have had to take those weeks off regardless to accommodate to Thomas's homecoming.) I was not going to resume school this week because I was so fatigued, I was bleary eyed, and juggling many new tasks. However, the kids expressed interest in school come Sunday night--especially Thomas! He asked me how soon he could "do his Kindergarten" the next morning?

It's really tough saying no to this little fella. 

So I printed out school lists which should be almost entirely independent (for everyone except Kindergartener and second grader) if kids have good attitudes and I said we'd give it our "best effort." Even on Monday when Thomas and I had three hour-long appointments over the day, we were sitting at our school desk by 9:00 and finished with Kindergarten after an hour: math, phonics, penmanship, and Bible story.

For good or for ill, Kindergarten has been much simplified since my first Kindergartener 10 years ago!

Amongst everyone else, we are doing some bookwork, they are devouring good literature, but mostly we are working on some enjoyable, well-rounded activities: one child is growing beans in the yard, Thomas is sprouting beans in moist paper towels and sprouting a carrot top on a plate of water, and I have gotten back to some gardening. The kids nearly daily visit four sweet dogs in adjoining yards to play with them. I've been working on a major garage spring cleaning (throwing away stuff) and reorganization an hour each afternoon which soothes my spirit. Three of the kids have been creating woodworking projects. I've been sorting all the boys' clothing for the first time in a year (swapping to appropriate sizes because it was getting pretty humorous), such that the hallway is full of bags for donation. We've taken numerous walks in this fine spring weather.

So, yes, we're only doing some school, but we're in the School of Life and Love right now.

First Haircut

Thomas got his first post-chemotherapy haircut, a wonderful milestone! It wasn't that his hair was too long, but apparently when it grows in from a bald head (like a baby), the hair is one mass of flyaways. Also, Thomas needed his hair trimmed off his ears and neck! Looking so handsome . . . 

Physical Therapy Progress

Thomas is gaining so much strength! He received a walker this week and you should see this kid take to it!

Our 12-year-old has become our Assistant Physical Therapist. The professional PT teaches Mary how to do everything and Mary is really the one (not me) implementing therapy during the week, the goal of which is three sessions daily (of at least a half hour each). 

Thomas is still supervised almost 24/7--including after he gets tucked into his bed in our room around 7:00 and one parent sits in our master room the rest of the night--but in a rare exception when he was hanging out alone in the den with me 15 feet away in the dining room, this determined little scamp crawled across the floor, climbed up into his walker himself, and then tried to walk to me! He scared me to death, but I was so proud of him.

One day he inquired, "Mama, may I scooch down the stairs by myself?"

Medical Updates

Pancreatic Function

Thomas took a second pancreatic function test and it improved by double, coming back in the low end of normal. This means he can drop one of two prescriptions. The doctors say his function will probably keep improving. Interesting info: While most of us lay people think of the pancreas as simply producing the hormone insulin to process sugar, the pancreas is actually responsible for producing three important hormones and three important enzymes to digest food: In fact, 95% of the pancreas produces digestive enzymes, leaving only 5% producing those hormones. Without a well-functioning pancreas, a person cannot get the nutrients out of the food he eats!

Bye-Bye IV Access

Thomas finished his week of overnight IV fluids and is now receiving nothing through his port. This means a huge milestone for Thomas: For the first time in five long months, he is not "accessed," meaning there is no IV line hanging out of his chest. His port is still there underneath his skin and will probably be removed in a minor surgery very soon. We are impressed and grateful that Thomas was accessed for five months but only experienced one line infection, which shows the excellent, careful care by the nurses and God's providence.

Somewhat More Rest

One of Thomas's drugs, which is only a very slow wean, finally transitioned from dosing every 6 hours to dosing every 8 hours, and this means no more midnight waking! Now, I give him medications six times a day but not between 10:00 p.m. and 6:00 a.m.

I had been becoming so fatigued, I truly was wondering if there would be a point when this stubborn old mule could not keep going on. Obviously, for four and a half months, my sleep was incredibly fractured in the hospital, with staff coming into the room every hour or two all night, and my doing Thomas's body care myself. Once at home, Chris and I were newly the one giving Thomas his meds and responding to his pump alarms, like those nurses had been doing, so I was maxing about six hours of sleep and waking a minimum of four times, but sometimes rising hourly all night long. If you haven't had chronic insomnia for 25 years, you might think that a person that exhausted would simply crash to sleep, but insomnia is its own living purgatory, so there were many nights it would take me an hour to fall asleep between each waking, which meant I was rarely sleeping.

No more IV pump means I only have to deal with the J tube pump, which doesn't alarm or need attention, if all is going well. No more meds at night means only waking to do body care. 

Thomas still suffers retching (vomiting). The team is working so hard trying to figure out this mystery that has plagued Thomas since PICU lo those many months ago. Articles and personal accounts of gastrectomy indicate that there is one to two years of adjustment required.

More than You Ever Wanted to Know About Tube Feedings

Each evening while the children whirl around me cleaning the kitchen, I finish calculating all of Thomas's meticulously tracked foods in My Fitness Pal.

1,300 goal calories

minus calories by mouth

equals how many calories (mLs) of J tube formula to run overnight

Say Thomas has a really good day and eats 600 calories: I still have to run 700 calories overnight, which at 40 mL/hour would take a whopping 17.5 hours! (But if I run it faster, he can't absorb it anyway and experiences dumping syndrome.) Say I run his tube feedings from 6:00 p.m. to noon . . . he still needs about two more hours off feeds before his body "wakes up" and he is hungry. We've tried requiring him to eat by mouth sooner than that and it makes him want to throw up because he is stuffed (with formula). So, then he might not be able to start eating till 2:00 p.m. and his eating window closes at 6:00 p.m. For how teeny tiny he can eat at a time, there is no way he can eat even 600 calories in four hours.

We discovered a problem to surmount: If we take Thomas on an afternoon outing, he barely eats, even though I pack snacks and push them on him. Then his calorie count is so low that it will take 18-20 hours of tube feedings to make up for it . . . which closes the eating window the subsequent day . . . so the cycle could continue.

Solutions? Thomas can't have multiple afternoon outings in one week. When we do go out, one idea is to put him on his tube feedings in his portable backpack so he is receiving calories during that time. 

Getting this kid to eat is a very big part of our family life now! A sibling or I prepares and encourages food almost hourly.

Baking with Mama

Baking with Mama

Fever

We experienced our first Fever Watch. We have instructions from his Oncologist and Pediatrician about how to handle a fever in an asplenic little kid: If he gets to 101, go to the Emergency Department, get blood cultures and a CBC with differential, and get IV antibiotics. These instructions won't be in effect forever, but asplenic patients are most vulnerable younger than six years old (and next most vulnerable younger than 18 years old), plus Thomas is  within six months of getting his post-splenectomy vaccinations, so they are still building up effect. Previously I would have had no idea what a spleen does, but it's very important in fighting off nasty encapsulated organisms. Anyhoo, Thomas had a fever of about 100.5 for two to three hours before it broke on its own. I forewarned Thomas that we might have to go to the hospital for antibiotics, so he wouldn't be startled and scared: he looked at me quietly and asked, "If we go, will we stay for fewer days than the last time?" (you know, four and a half months). Break my heart! When I was able to tell him we were not going to the hospital, and you should have seen his joy.

Believe Me, I Can't Do This

(as well as my prideful self wants)

I will have much better perspective on all of this in three months, six months, a year's time and I look forward to the spiritual insights I cannot see right now. This week when I took Thomas to his oncology appointment (milestone: first doctor's appointment to which I took him alone!), the oncologist said (with Thomas napping and unawares next to me), "Let me take off my doctor's hat and ask, how are you?" . . . and I burst into tears and let out a torrent of fears and stress and mental load.

I'm grateful for the kids doing their chores and the housekeeper who does our deep cleaning, even though I wish I could do all of it. I'm thankful for various kids and husband making breakfast many mornings since I'm busy doing Thomas's morning routine and medications then.

I'm grateful for the flexibility of homeschooling right now, since I can't run a strict ship at the moment.

I'm grateful for my husband who works from home pitching in as often as he can and doing most of the carrying of Thomas up and down stairs.

I'm grateful for these last couple weeks of meals our community is bringing us before I add in planning and making meals to what I am juggling.

I'm grateful that I was already a stay-at-home mother, so I can juggle multiple medical phone calls and emails daily, four therapy appointments weekly, one to two doctor's appointments weekly, managing a dozen medications, including calculating for weans, pushing food constantly when even a 5-calorie bite of something matters.

Goals I am hoping to tackle one by one are to rebuild individual relationships with each of my kids and husband, plus get each of the kids back into activities in society after such a long, isolating lockdown, and personally I need to redesign a formal spiritual life, visit with friends again, start exercising, start giving back to the community that has given so much to us, and lose a third of my body weight.

Homemade pancakes, sausage, and fruit made by 10-year-old

Eating lunch outdoors for fun

I am grateful for how the siblings are my personal Army of Child Life Specialists. They adore Thomas and do special activities with him numerous times daily. He paints and draws multiple times daily, he learned how to sew this week. We worked on a family puzzle this week. He has played numerous board games with them. He has sung countless rounds of songs with the siblings till they all breakdown laughing. They take him in the cul-de-sac in his wheelchair, on his adaptive tricycle, or driving his electric car. As I write this blog post, Thomas is napping and two siblings are sitting quiet vigil next to him because we don't leave him alone.

Colossal squid

First sewing project

Big brother reading aloud

Big sister snuggles

Gifts from a sweet friend

A gift from a sweet friend

Meanwhile, Thomas is processing it all and asking many questions. About a week ago, I read him a children's version of the Book of Job, which contains real spiritual insights into the story, not fluffy. Each night since, Thomas has asked one of us to read him the Book of Job before bed. I, for one, think he is doing deep thought about his own suffering.

We are all tired and trying our best in our new circumstances, but none of us are as cute as Thomas when we are asleep!

Sleeping with his stuffed squid