An Update on Thomas, a Prayer Request, and a Photo Dump of Puppies

Three-Month Update on Thomas

People often ask Chris and me, "How is Thomas?" We decide how to answer by gauging the situation: the person, is it one-on-one or in a group, is the social setting one of so much levity that nobody really wants to hear the truth, or perhaps Thomas is nearby and we don't want to burden him with hearing his own update.

We usually answer something along the lines of "fine," "chugging along," much better," or "improving day by day."

You guys have to know that is mostly social niceties talking.

Nobody should feel bad, either. It is still kind to ask offhandedly how is Thomas, even if not seeking a lengthy, medically detailed answer.

Water Weight

I haven't given a comprehensive update on Thomas since what should be his final revision surgery last November, three and a half months ago. We were very excited at the time because he was suddenly eating more than ever before (often 1,500 calories by mouth) and seemed to gain nearly three pounds.

Now various clues have shown us that the weight gain in those first few weeks was almost certainly mostly water weight because the week after surgery is also the week I began the new regimen of meeting his daily water goal via his J tube. We had only recently received test results showing he was chronically very dehydrated, which makes sense since he was only drinking about 6 ounces of water per day.

So, he mostly gained water weight and then stalled out, and even lost weight because his eating by mouth has fallen to an average of 1,000 calories per day. Since that is an average, that means there are days he eats only 700 or 800 calories.

He needs 2,000 calories: a high number for a 6-years-old to reflect his degree of nutritional malabsorption.

Single Digits on the Growth Charts

This week, Chris and I reviewed his growth charts, having tired of hearing from one particular physician that we have no cause to be worried "because Thomas's BMI is average."

Indeed, his BMI is currently 56th percentile, which is average. The day after he was diagnosed with cancer, his BMI was in the 84th percentile because he was always a very sturdy, muscular child.

More illuminating of Thomas's health is that his height for age has dropped from the 15th percentile to the 5th, and his weight for age has dropped from the 48th percentile to the 13th.

Thomas's BMI is average because he is tiny in height in weight. He is now regularly mistaken for a twin of his brother two years younger, leaving me to smile at well-meaning strangers.

My Best Efforts

For these past three months, we have been doing much with medication management and behavioral changes to try to help Thomas gain weight. I mostly do not leave the kitchen all day. I come downstairs fully dressed "to the shoes" (as they say) around 5:30 a.m. and many days when I go up for children's bedtime routine at 7:30 p.m., that is the first time I've left the kitchen.  I cook hot meals for the family, of course, but specially curated meals for Thomas seven to eight times per day. This is so near-constant that I have my "office" (desk) in the kitchen and I've moved most of our homeschool to the kitchen.

When feeding Thomas, every ingredient has been evaluated and calculated for this child who will experience out-of-control blood sugar and dumping syndrome if he eats more than about 20 grams of carbohydrates (about the amount in one slice of whole wheat bread) and whose body cannot absorb fat. I log every meal, every day, and I go back and do analysis to find patterns of "what sits well" with Thomas (as he phrases it) and what simply caused more weight loss. My "job" is defined by many "failures," and punctuated by some successes that might seem minor to others, but, for example, my searching through dozens and dozens of a certain nutritional supplement he needs in order finally to find a version that is sugar-free is a reason to celebrate in my little world.

Meanwhile, how does a mom of a medically complex person care for her child to the degree that he needs without making said child feel like he is the most important of all his siblings and without making his siblings feel that they and all their wishes and desires are less worthy? I can talk (reassure) all I want, but actions speak louder than words. The answer is: it is basically impossible to remove the medically complex family member from the center of attention/time/money, and the guilt certainly comes home to roost in the parents.

New Test Results

This week, we got results back from a test also performed three months prior. Some bad results were unchanged despite my best efforts to improve them. One of Thomas's nutritional markers was, according to one of his doctors, "the lowest I've ever seen in my career . . . except for three months ago when I saw the same number in Thomas then, too."

The team cheerfully announced wanting to put him on a particular drug to help (and it probably would help). I replied immediately that that drug is contraindicated with another necessary drug he is on right now. (They didn't know that because pediatric teams do not prescribe the latter drug, which is for adults, and have very little familiarity with it. One can hardly blame them as I understand there are something like 20,000 prescription drugs in use and approved by the FDA, so that's a whole lot of medications to know off the top of one's head.) 

Suffice to say, the new drug would completely negate the drug he is currently on, and both seem necessary to solve serious problems, and neither really seems to have a substitute.

So, that doctor is going back to the drawing board to consult with colleagues (read: nephrology, gastroenterology, endocrinology, pharmacology, and the dietician).

Prayer Request

Something in the works for months has been to be referred to and then accepted by the Boston Children's Hospital, likely the Center for Advanced Intestinal Rehabilitation. After my sending emails for months and making three phone calls in the last two weeks, we are close, so close, to being accepted . . . but we haven't even begun to begin to get insurance approval and being "so close" might still mean months. Months of failure to grow, months of growth potential Thomas cannot gain back. So, we'd be ever so grateful for prayers for this specific goal.

My Own Reminders

I remind myself daily that God allowed this in His providential will. God is good, all the time. We cannot understand His ways or His much-larger perspective.

What I don't need reminding of is that there is no shortage of sorrow. So many families "have their troubles." I think through the families in my life and most or all of them are dealing with some grievous difficulty. This is not a competition for who has the worst sorrow. We all need to cling to God during these times.

Puppy Love

One wants to end on an uplifting note, so I will share many photos of our first week home with both Nicky (20 weeks) and Tilly (13 weeks). He now weighs more than 12 pounds and she gained from 5 lbs 1 oz to 5 lbs 8 oz in her first week in our care. They are becoming more comfortable with each other each day.

So relaxed in her puppy carrier that she fell asleep

Making friends: drinking water from the same bowl for the first time

"Pwease be my fwiend!"

Matching red sweaters

Morning snuggles

Morning snuggles

Schoolwork with Tilly

So cozy!

Supporting the family with his little buddy close by!

Nicky in Chris's desk drawer

Sleeping with her purple octopus

Blowing bubbles for Nicky

Increasingly trusting: napping together

Training to sit

Dressed up as a babushka

Dressed up as a cowboy

Double the morning snuggles!

My two redheads