Day 97: A Dynamic Day

Duplicated on our CaringBridge site for permanent record here.

February 22, 2021, written by Mama

97 days in the hospital: 63 in PICU, 28 in the Oncology ward, 6 at In-Patient Rehab!

Today turned out to be a day so dynamic with activity, discernment, and decisions that it reminded me of earlier hectic days that I thought were behind us!

An Early Alarm

It was a hard overnight: Thomas's digestion problems are so serious right now that he woke six times overnight needing my help. This is distressing for him, it causes a laundry problem, a bedding problem, a sleep problem, it could lead to a dehydration problem, and maybe even a nutritional malabsorption problem. So, Thomas and I were both exhausted when at 6:10 a.m. a staff member BURST into our door, past the sign on the door that indicates "WE ARE SLEEPING SO BE QUIET," whooshed into the pitch dark room and announced her presence with not just a conversational voice (which would have been too loud) BUT A VERY LOUD VOICE. "I AM HERE TO DRAW BLOOD."

I almost fell out of bed, but leapt from a tangle of blankets to my feet with heart pounding out of my chest. Obviously Thomas was woken. I told this woman that Thomas's labs were scheduled for 7:30, not 6:10. She emphasized that she was here to take blood.

I replied that Thomas gets to have EMLA cream. She retorted loudly, "I don't carry that with me, sorry."

I said that was okay because Thomas's nurse has EMLA cream for him, but she would have to wait 30 minutes for it to take effect. She said no to my face, which is when I told her (as I grabbed the phone) that I was getting my nurse. The woman turned on her heel and departed.

We've had our particular night nurse before and he is of serene, relaxed demeanor, reminding me somewhat of a sweet Eeyore. Therefore, I was surprised and pleased when he came into the room full of energy and quite angry on our behalf that any staff member would burst in at such an early hour demanding to take standard morning labs (no stat emergency). He sent her away to come back a couple of hours later.

Of course, Thomas was by then wide awake, so our day began bright and early with him requesting me read him many Bible stories.

Ultimately, Thomas got his EMLA cream, the labs were done at a civilized 8:15 a.m., and Thomas gave nary one whimper.

New Hybrid Homeschool

Our firstborn son also had an exciting morning! Mid-stream in this year, we have enrolled John at Regina Caeli Academy, whose local center is only three miles from us. We had actually intended to enroll all our children in Fall 2020, but Thomas's diagnosis caused us to hit the brakes. John is enthusiastic and exciting about this move and we parents think he will thrive with the structure and engagement. John will attend this hybrid school in person two days per week and homeschool the other three days per week.

Part of my meltdowns these past few days has been behind the scenes getting ready for John to transfer over. We had to attend a family interview, fill out many, many forms online, I had to figure out how to order all the uniform items (measuring my boy this way and that), and I had to order all his school books (comparing to what I already own on our shelves) and the office supplies. It was a lot of organization to manage over four days, but we parents and John really do think it will be well worth it.

Getting Stronger Daily

Thomas had three and a half hours of hard, challenging therapy today spread out over five visits. That is a whole lot of a schedule to work in everything amidst, including body care, medications, trying to convince him to eat food (not a good eating day).

We did also have great fun today. Thomas played with his medical kit and bandaged up Rexie's arm injury. He can tell you many details about all the medical equipment he has charmed from the staff here.

We played with water beads and a frog life cycle kit gifted to us by a lovely friend. We had the most delightful, quiet time just feeling all the sensations in the water and talking softly about frogs.

We are keeping up with our Holy Heroes Lenten Adventure. I wasn't even going to do this with Thomas this year, but he said to me last week, "I just really want to learn more about Lent." So I dashed home and immediately stole one of the Lenten Adventure books I had bought for another of my kids and brought it to the hospital!

Thomas is growing so much in his overall constitution. I still remember when just touching his body caused nerve pain all over (a known condition of decompensation and he's on meds for it). Just putting him in a wheelchair for a few minutes was exhausting and painful. Now he comes back from therapy and doesn't even want to get back in bed to rest, as he can stay upright in his wheelchair for hours.

The staff here is so creative in trying to motivate children and keep things fun. I even see them reaching out to the teenager patients here, having these big strapping males hang out with them out in the hallways, listening to modern teen music, connecting with them in ways I'm sure the teens need.

The staff knows that Thomas's favorite show right now is Mr. Rogers, so they set up a Mr. Rogers scavenger hunt. They put out 16 cartoon pictures of Mr. Rogers characters all over the ward and Thomas spent 35 long minutes walking around in the gait trainer trying to collect them all. His newly lengthened endurance amazed us all!

Afterward, we went to the play room where he was positioned to kneel on the couch and asked to "kneel up" to reach the counter so he could glue his characters onto the trolley. This whole thing motivated Thomas well!

Thomas accomplished numerous first-time ever things in his Physical Therapy sessions today. Even though it was afternoon and he had worked physically hard all morning, Thomas got into this supported standing position (a first) and stood not for a few seconds but for 30 minutes straight while playing a game involving cars smashing down dinosaurs (motivation for us all, I'm sure).

I've been seeing Thomas's bright personality emerging more and more: Today he was truly talkative the entire day, whereas many or most days, he has been mostly quiet with a few periods of talkativeness. Today I saw him freely laughing numerous times. During his last PT session, he talked her ear off for half an hour, just like he used to be known for by all his oncology staff. His speech therapist was overhearing him before her subsequent appointment with him and she came to me laughing so hard, saying that clearly he doesn't need Speech Therapy. Still, she kept her promise for the appointment by just playing with him while he had an enthusiastic, loquacious conversation with her for thirty minutes, too. She ended by saying, "His vocabulary is stunning. I'm discharging him from Speech Therapy!"

Back at the room and amidst a flurry of activity (more on that momentarily), two different families drove by to wave to Thomas. I was able to sit him in the window, so the friends could see us waving and Thomas could wave back. Thanks for the warm fuzzies in my heart!

Medical Updates

• Thomas probably should not had his pancreatic enzymes discontinued, something that happened just before his digestion went bonkers a week ago. Communication broke down and his surgeon wasn't informed, so now his surgeon explained why the pancreatic enzymes are so important and is reinstating them.
• Apparently when we moved floors a week ago, Thomas's periactin prescription "fell off his MAR" (Medical Administration Record), something GI only noticed today. He was started on periactin to control his retching and emesis so Thomas could stop taking thorazine (a drug he can't go home on). So this whole week while he had retching and emesis, we didn't realize he wasn't even being given his periactin. That is being resumed tonight. (On the other floors, each day at Morning Rounds, the team lists out loud all of the patient's current medications. In Rehab, there are no Rounds, just "being rounded on" by individual doctors at random times and days, so there is no listing of medications for the parent or patient advocate to be aware of.)
• After Thomas's last PT session today, we came back to the room only to discover bloody output into his surgical drain. Was this a repeat of the bleeding episodes a few weeks ago that started with this exact drain full of blood, followed by the explosive GI bleed the next day? When Thomas bleeds, the staff goes into DEFCON 1: I immediately picked up the phone, called the nurse, "The drain has bloody output." The Nurse Practitioner manager of the floor was in my room within two minutes, the Surgery team gotten on the phone then and there. The NP looked at me and said, "You've been through this a lot. Thomas needs to be NPO just in case" (. . . of needing surgery). I said, "Yes," walked over, and removed Thomas's snack right out of his hands. Then I knelt down and explained to him that he had blood in his drain, and maybe everything was okay, but maybe he would need surgery, which meant he had to stop eating . . . and my tiny boy knew the drill exactly and accepted it right away. What a childhood he is having. Blood labs were drawn within 30 minutes and it was a tense two hours from 3:00 to 5:00 while we awaited word. My heart was saddened when I saw Thomas studying his own drain at one point and analyzing properly the color and character of the bloody output, noting that "it looks like fresher blood than earlier. Look, Mama, it's brighter red. Bright red means new blood." Thomas was correct and no five-year-old should have reason to understand that. Within a couple of hours, Surgeon Dr. B---- said that this appears to be normal just from some friction of the tube internally and is nothing to worry about. Let's just see how much Mama doesn't worry overnight.
• In the morning, the wonderful and dedicated Rehab Case Manager introduced herself and prepared me for applying for Thomas's various governmental secondary insurances, like Medicaid programs. I can anticipate many, many hours filling out paperwork and doing interviews. I can anticipate waiting up to six months until there is coverage. While Medicaid provides 720 hours of respite help from a personal care assistant, that won't become available until Thomas has Medicaid . . . in six months . . . when the time I need acute help will be when we are discharged and for the immediate few months. Also, Medicaid covers his J tube formula (necessary for life), but private insurance does not, so that costs $600 per month. I took copious notes and added them to Thomas's ever-fatter Care Binder. Tomorrow, I start making phone calls to governmental agencies.
• And speaking of formula, the entire hospital is out of Thomas's formula due to a supply chain problem. Maybe the supply chain got disrupted by this severe winter weather; I heard from a friend that some medically fragile kids have been having to skip doses of medication due to medication not shipping to them on time. I never would have anticipated being the parent of that medically fragile kid who now has to depend on an outside source to feed him. He takes Vivonex and no--I asked--it can't be substituted out for a night: it is a specialty formula "for patients with severe gastrointestinal dysfunction" (cue sobered Mama heart). We realize Thomas has had to be NPO many a night while waiting for surgery, so it's not like he will fade away: at least this time if he wakes up in the night and wants to eat a midnight snack, I can offer him some bites by mouth! It just happened to coincide with a day he didn't feel good and could eat only a few bite at each meal.

Some kind soul donated teddy bears and pajamas to all the kids on the ward. Thomas requested to don his Christmas robe and take a matching picture with his new bear, christened Sammy, Jr. He combed his hair himself and also combed Sammy's fur. I love this boy.

And after such a rough night's sleep and such a dedicated day exercising, Thomas asked to be tucked in at 6:15 with a big grin on his face because he was so proud and excited at his progress standing today. I wish so much I could have captured in photo his smile of accomplishment.