Day 100: Was a Busy One!

Duplicated on our CaringBridge site for permanent record here.

February 25, 2021, written by Mama

Symbolic Milestone Day: 100 days in the hospital: 63 in PICU, 28 in the Oncology ward, 9 at In-Patient Rehab!

Our family deeply appreciates all the prayers and sacrifices for Thomas and the encouragement for our family. I do read all your comments each evening.

Today was one of the busiest days I can remember in some time, full of so many consultations, morning and afternoon, that I often had different teams bumping into each other, standing in line to discuss things with me. I took notes incredibly quickly and then wrote out everything at length to email home to my husband. Now after writing pages and pages to be as detailed as possible, I will try to summarize as prudently as possible for our blog and CaringBridge!

Thomas Had a Better Day

After two days of taking almost nothing by mouth, at mid-day today Thomas began eating again. Over the day, he ate:

• Turkey bacon 1/3 strip
• Rice Krispies with 2% milk, 1/2 serving
• Greek yogurt, 50% of serving
• Sandwich with two slices bread and two slices deli turkey, ate 80% of it
• Penne pasta, 4 noodles
• Apple juice, 2 oz
• Roast turkey,  8 bites
• Broccoli, 1 floret

Thomas was able to attend all his therapy appointments, including having the energy to throw a huge tantrum at the first appointment. Afterward, I snuggled with him on the floor mat until his tears dried and he fell asleep in one of those deep, post-tantrum naps.

He talked to me more today (more than nothing), watched the movie Miniscule with me, invented a tool to sharpen crayons, and even burst into two genuine smiles in the evening. These are welcome improvements to our puny boy.

Therapy Update

A therapist of 10 years today approached me with some changes that are hard to make but needful. After a patient spends a tremendous amount of time in the hospital, he usually becomes passive and self-identifying as a person who can't do anything. When Thomas first got his voice back, the whole team was just thrilled if he could bark out, "Water!" I am assured it is normal and laudable that I as his mother have been devotedly taking care of his every need.

But now they need me to stop.

Thomas has lost his initiative and doesn't seek out to do anything himself. Every single thing he can do (even if it takes so much longer), they want me to have him do. He needs to dress himself, he needs to scooch himself to the edge of his bed, he needs to reach for his own things.

They're asking me to make myself increasingly absent during therapy so that I am not Thomas's safety net for him to refuse to try. (This might explain why I have virtually never see any other parent in the therapy rooms with their kids . . . while I'm always sitting right there, offering what is probably not so helpful commentary.)

They're also asking me to reach for the ideal that Thomas is allowed in his bed only during his two-hour rest time and at bedtime. I remember when we were on the 11th floor, he could only get out of bed for two 30-minute therapy sessions daily, so when we transferred to Rehab, it was a shock to the system that he had to be out of bed three and a half hours per day! He was so exhausted, he fell asleep at every turn. Now it is nine days later and he's not so fatigued. Lying in bed contributes quickly to debility and, in contrast, simply sitting in a chair or sitting on a mat is using many muscles all over the body that are getting stronger by the day. Of course, this new goal of staying out of the bed is really challenging because I'm an exceedingly busy woman even here in the hospital juggling so much of Thomas's administrative care, his bodily care, and managing things at home from afar (lots of computer and phone work). While I can park Thomas in a wheelchair maybe for one hour, his little bottom gets sore after that, so he needs time on the mat and on the couch . . . and then I can't leave his side in case he tips over. It's all just adding to tasks that must be done that I don't know how to do. Jesus, you'll have to give me the strength.

Also, it turns out that Thomas's left ankle is too weak to move itself, so Thomas is being prescribed a brace so he doesn't drag his foot while he takes steps.

Medical Updates

There are so many medical updates and I will try to stick to sharing what we know and withhold all the tremendous unknowns of what is being considered.

LIVER ULTRASOUND: The liver ultrasound was unremarkable, so Thomas probably does not have cholangitis (although that will always be a risk for him).

NUTRITION. We are trying new nutrition methods. This took parental meetings with Rehab, GI, Surgery, and Nutrition, and then the four specialties discussing amongst themselves, before a new plan could be implemented. Thomas will be on a new formula (with significantly different fat and carbohydrate levels) for his J tube feeds, which are now starting back at 10 mL/hour for 15 hours. They will slowly increase to 60 mL/hour for 10 hours over the next six nights. Meanwhile, he is on TPN 20 hours per day covering all the rest of his nutrition, and that will be weaned down concomitantly over the six days. Also, it is all timed so that Thomas will get four hours off of both the IV and the J tube feeds each morning, which should help tremendously with therapy. The scientific information going into the nutrition decisions was actually incredibly interesting and took up the most notes I wrote all day.

The team needs to see Thomas regain at least two of the four pounds he lost this week.

FOOD BY MOUTH. Thomas is bored to tears by eating the same few foods for three months, something I, as the mama living with him and eating the same handful of foods, can empathize with. Today I did a bunch of food research, then ordered numerous creative foods that are friendly to his new nutrition limitations and Chris will be valiantly delivering them to the hospital late at night after his long day. I'm hoping that fresh, interesting foods will coax Thomas to eat by mouth.

MEAL PLANNING. I'm working with a new meal planning software and, as I do meal planning and recipe research in the few moments I can patch together, I'm filling in the software. I hope so much when we are finally home that I can manage to cook for my family. In the meantime, I cannot ever express enough gratitude for our whole community who has been feeding us weekly for three months straight and for many chemo weeks prior to that.

PANCREATIC ENZYMES. Thomas is back to receiving pancreatic enzymes during his J tube feeds, but now also will take pancreatic enzymes before he eats orally at each snack or meal during the day. This addition makes a lot of sense.

NUTRITION ABSORPTION. No one on the team actually knows how well Thomas is or will be absorbing nutrition. When we are outpatient, GI will be testing that with labs regularly.

VITAMIN B12. Every so often, the team presents us with a new problem that they have known about all this time, but if they presented every single problem to us at once, we would have just died on the spot. So, they dribble them out over time. It turns out that without having a stomach, one cannot make any intrinsic factor, a substance secreted by the stomach that enables the body to absorb vitamin B12. Without vitamin B12, many bad things happen, including Thomas remaining as anemic as he is now. Thomas will have his B12 levels measured tomorrow and then will have supplementation prescribed in the form of weekly shots for a month. Then we parents will give him a B12 shot once monthly, and he will receive those for the rest of his life.

C. DIFF. Thomas remains in lockdown in his room as we now wait for the results of the C. diff test and an entire stool panel. The poor therapists working in my room today were pouring with sweat as my thermostat is broken (maintenance has been called) and they had to wear plastic blue gowns in a stuffy, 75-degree room.

SEPTRA (BACTRIM). Thomas is graduating off of his every-weekend Septra antibiotics, for which we are so grateful! His lymphocytes are high enough now post-cancer treatment that protocol says he is no longer vulnerable to the concerning fungal infection. We are thrilled to get rid of every antibiotic we can.

ZOCIN. However, Thomas's white blood count and platelet count (reactive thrombosis) both indicate that he has an occult infection somewhere. He will finish a 10-day course of Zocin . . . and maybe his starting it is why Thomas stopped feeling puny and experience a turnaround today! Once he is done with Zocin, he will go back to daily penicillin for being asplenic.

PROBIOTICS? Some folks have inquired if it would be helpful for Thomas to take probiotics to help reset his gut. Indeed, he has been on massive, nuclear-bomb level antibiotics for three months, so his gut biome is completely unnatural. Unfortunately, he may not take probiotics. (1) His continued antibiotics would likely make taking probiotics an expensive waste of money. (2) Probiotics are contraindicated for someone with a central line (which he won't have forever, but will have probably for this year). The probiotics can allow good bacteria to grow out of control, unchecked by bad bacteria (because they're being killed by antibiotics) and even good bacteria can proliferate and cause a central line infection.

PANCREAS CONCERNS. I consulted with two surgeons and two surgical nurses over four separate visits today about Thomas's leaking of pancreatic fluid (which we were told today for the first time has always been "unmeasurably high"). I suspect the final testing will be done next week, and this test is in itself pretty risky, so our surgeon is consulting with three other hepato-biliary surgeons who do this test. The situation could go one of several ways and the data is necessary enough to justify a test with risks. This whole pancreas situation is one we need to haul with our weak, weary bodies to the foot of the cross and say, "Please, Jesus, take care of all of this."

BUREACRACY. I'm elbow deep in learning about governmental and charitable organizations, trying to obtain equipment like a wheelchair, and navigating insurance. I thought having gold standard insurance covered all the basics, but I was quite mistaken.

DISCHARGE DATE? Our estimated discharge date has been moved out and now it is a regular part of discussion that Thomas's medical care could be becoming too advanced for the Rehab floor, in which case he would bounce back to the Heme-Onc floor.

Prayers for perseverance are appreciated.