Day 10+ transplant 

9/22/24

Atti’s cheeks and lips and lower jaw are so swollen from his severe mucositis. His throat is so swollen he can no longer swallow pills and barely any liquid at all.  

When I arrived this afternoon, his feet appeared hot, red, streaky, and swollen. He was also flushed and seemingly half awake half asleep. I asked the nurse to come in immediately and take his temp and look at his feet.  His temp was cazo, 100.3.  I also asked about his weight. He has gained 6 lbs in the last 3 days without eating any food.   Obviously retaining fluid. 

The PA was paged: IV Tylenol, Flagyl, and increased pain meds added.  

He’s now on all dissolving or IV meds. 

He also had a PCA pain pump added since it’s hard for him to even swallow any codeine pills. He doesn’t think the PCA helps his excruciating mouth and throat pain, however it does make him drowsy and has a hard time tracking. 

The new antibiotic and Tylenol (maybe more the Tylenol?) helped him seem less out of it with fever. 

His feet also feel incredibly painful to walk on and there’s not good explanation for that… could it he tendinitis?  Fasciitis? Swelling in his feet? 

Around 8 pm after going for a lap, he had another massive nose bleed. Took about 30 min to clot and resolve. Much better than his first nose bleed with low counts which was Friday (day 8) and lasted 5 hours. 

Friday and Saturday nights he felt like he couldn’t sleep for more than 45 min at a time.   He’s exhausted today (Sunday). They’ve added back a med to help him sleep. 

He has to use suction to suck out mucous, saliva and dead sloughing / peeling skin from him mouth and throat every 3-5 minutes.  

9/23/24

I’ve changed his goals for today to just include survive. That’s where we are right now. 

His cheeks are puffed out and swollen from the inside lining of his mouth being so raw, swollen, and bloody. 

His mouth and throat now hurt so badly sometimes it hurts too much to even suction and he has to just let the saliva he can’t swallow fall out. He can hardly speak. It’s too painful and it’s to hard to understand him anyway.  

My heart is breaking.  

There no way to even get a phone camera in far enough to see how awful it is and it hurts too much to open wide. 

The doctor team believes his case is severe but not unexpected. And the only real cure beyond palliative measures is for his immune system to start to repopulate his own white cells which have been Nader (zero) for the last 4 days.  Maybe 1-4 more days to go. 

I’m not sure I could survive 4 more days like this.  

It’s hard to sleep: pain, interruptions, constant IV meds at different times since he can’t swallow pills anymore, blood cultures for his fevers, labs, vitals…..  so he’s always tired and slightly disoriented. Plus the pain meds. Everything has to be IV now. He has a pain pump.  

I feel so powerless to help him feel better. 

By the end of the day,  He thinks the pain control is better but he’s having these vivid waking dreams / in and out of consciousness and he doesn’t like it at all (of course) so they changed him from dualadid to fentanyl  because they said it has less of that change in mental status effect. That just happened. He’s was also getting pretty itchy on the dualadid so they ordered liquid Zyrtec as well but it hasn’t come up yet

9:30 pm: Atticus has at least 12 bags of meds hanging / running IV

TPN has been started 

9:30 He’s snoozing now so I’m going to try to go to sleep but they’ve said they’ll be in at 10, 11, and 12 and then try to leave him alone from 12-4 but we will see how many of these lines alarm during that time or what else goes wrong. 

9/24/24

Last night was no improvement.  Still so much mouth pain. Difficult to get any relief or control or any amount of sleep more than 20 min. 

Fentanyl is shorter acting and he can tell. But he was changed to that because yesterday on diluadid he was having awful sensations of being crazy. Waking dreams or dozing off and not being able to tell what was his dream and what was really. Constantly feeling startled awake or startled out of nowhere. 

The glimmer in day 12 so far is that his blood count last night showed some neutrophils. After 4-5 days of nothing, a very small around registered!  They hope it’s not a lab anomaly (which can happen) but it’s very likely it’s the first sign of those HCT becoming his own cells again and repopulating!  

Please let this be the day his symptoms  start to slightly improve instead of just worsening each day. 

Please let it be today.