Gloria in Excelsis Deo: Lent Begins and Medical Updates

Weekend Travels

Last Saturday and Sunday, Chris took the oldest three out of town to a friend's birthday party in the adjacent state and then on to one more state beyond for a cubing competition.

I took care of three little boys and two little puppies, and my milestone was that I was not outright panicky, nor did I call my neighbor to have her "on deck" in case of an emergency requiring me to rush Thomas to the Emergency Room, like I have done each time Chris traveled for the last year.

Cubing Competition February 2022

Pop-Pops was able to drive over and join them for the day.

Lent Begins

As typical on Fat Tuesday, I forgot to be celebratory, so we scrambled and made a pancake breakfast for dinner. Then we lit a bonfire for roasted marshmallows that should have been s'mores, but I was out of the other ingredients.

This year, I am trying a new-to-me product, using the Lenten Calendar for Children from Dumb Ox publications. This Ash Wednesday, I forgot to bake the traditional salt dough crown of thorns, but my ALMOST-11-year-old remembered, so she baked it the next day.

Thomas's Medical Updates

On Monday, the two Drs. Lauer in their scrubs visited Levine's for Thomas's nephrology appointment. It was really hard for Thomas to go through his entire medical journey during a time when siblings were prohibited from the hospital and clinics. My kids never saw anything Thomas went through--and believe me, that has big effect: all they saw WITH THEIR OWN EYES was Mom and Tom leaving, spending all this one-on-one time away, and Thomas coming home with innumerable presents. Thomas never got to share his experience truly in person with them, which left him feeling so isolated. I cannot express how excited Thomas was today to take his four-year-old brother with him into the clinic, show him around all the familiar places, and have David watch Big Brother Thomas give blood like a pro, with nary a tear.

Thomas spent all week learning how to swallow pills, a task often achieved by children using candy. I searched for tiny sugar free versions of candies, and was thwarted, so I decided Thomas would just have to learn slowly because his glucose could handle only two or three tiny pieces of candies per day. In one week, Thomas learned to swallow a Nerds, a mini M&M, and finally a Jelly Belly. Yay!

But then you know what's funny-not-funny? After I studied much, much about how the Creon capsule and interior granules work, and what the effect of having no stomach (= no stomach acid) would be, ultimately Thomas still needs to open his Creon capsule and empty the granules into an acidic food before he eats it. I read numerous pharmacological articles, brought this problem to the attention of his doctors, and am still pinging back and forth emails with his medical team to try to figure this out. So, the whole point of learning to swallow his Creon pills (so that I don't have to carry around with me refrigerated yogurt everywhere we go) appears to be for naught.

Speaking of research and emails, this week was one tremendously busy with both. We parents and four doctors have been trying to figure out how to get Thomas's to be receiving pancreatic enzymes overnight while he receives his tube feeding, since he is taking pancreatic enzymes during the day with food by mouth. The new-fangled Relizorb cartridge designed for tube feeding will not work because Thomas's thick blenderized food cannot push through the cartridge. So I began researching and found a "bicarbonate sodium protocol" used at other hospitals, but our hospital is unfamiliar with it and, thus, wary. I emailed back and forth with one of the authors who has written about it. I emailed back and forth with our local team for days. They are reading up on it and deciding how to proceed, while we parents wait. This week I probably wrote a dozen medical letters (meaning two to three pages long with medical citations) after doing several hours reading medical journal articles.

Meanwhile, this week was an experiment of giving Thomas both his Acarbose and Creon, which are medications that don't "play nicely together." He has actually not shown any difficulty so far. However, this week his Monday blood labs came back and showed that his being on Acarbose for the last two months has challenged his liver, which suffered acute injury 15 months ago. Acarbose can damage the liver in even a healthy individual, so protocol is to check liver labs every three months. This was our first time checking Thomas's liver labs since starting Acarbose, and his AST rose 51% and his ALT rose 93%. The next experiment is taking Thomas back off of Acarbose and see if Creon alone will have a secondary purpose of softening his glucose.

Even while taking Acarbose and eating a low-carb diet, sometimes Thomas has days when his glucose is out of control and it's very hard to determine why. In case you don't know, a healthy person's glucose does not look like the below. The below makes a person feel very sick.

So, we're really in a pickle with these meds. A true rock and a hard place.

Thankfully, Boston Children's called again at the end of the week. We got Thomas registered in their system, and I believe I understand that the next time I hear from them will be when they call us with Thomas's appointment day and time.