Monday, June 2, 2008
It has been another trying week for Pepe. For three days, she was vented but not making much progress. At the time of the intubation, her PaCO2 was well into the 90s, a record for her and nearly impossible to bear. Her O2 sat was 82, her fever 103. She resisted the vent as always, but numbers like these and the suffering they cause eventually have their way. By the second day, her PaCO2 was still in the 70s, and she became concerned that she wasn't bouncing back as usual. Then she reminded herself that she had much more ground to cover this time, having let the CO2 levels rise so high, and toward the end of the third day, her values began to look encouraging. The next day the doctors pulled the vent. So Pepe is nearly tube-free now -- sans chest or breathing hoses -- but her respiration remains labored and her fevers high, sometimes over 104. Yesterday, one fever spike prompted a grand mal seizure, an obviously frightening event, though one Pepe doesn't remember. In addition, she discovered her PICC line was infected, possibly leading to more sepsis. Lab cultures are growing. Today she met with her CF doctor to demand more answers, more aggression, and more ideas. Why are her sensitivities three weeks old while she's spiking 104.5 fevers? What, if any, is Pepe's pathway out of this mess? Through whose OR? Wednesday she meets with the transplant team to discuss what it actually takes to get new lungs at Fairview. None of this badgering is Pepe's style, especially when she feels like hell, but this is the Week of Truth. Let's send her the strength and confidence to be able to get the answers she needs.
Sunday, June 29, 2008
Pepe was vented at 3 this morning after her doctors let her choke on her own lungs for over three hours, listening to all her monitors screech, refusing to help. It was an awful night, very nearly the final night -- too sad even to detail here. Too sad and too screwed-up for words. Sorry.***
Sunday, July 27, 2008
Sorry to report no improvement tonight. Pepe is in a great deal of pain, the worst thus far. For some reason, the weekend staff is skeptical of her complaints, contending that she is experiencing morphine withdrawal rather than legitimate pain. This far out, they say, such discomfort is abnormal. But Pepe did not have a normal transplant, which alone would be liable to cause substantial pain three weeks out. Instead, she was cracked open four times, the last time not long ago. She has had eight chest tubes -- over a small being's surface area -- and still retains three. And of course, she has incisions she has yet even to see or know the nature of. We can tell from experience, from the accuracy of Pepe's descriptions, and from the brute reality of what her body has endured over twenty five days that her pain is real, unembellished, and that she is on the edge of sanity for that single, entirely understandable reason. She is neither weak nor a drug-seeker. We've witnessed this over many months, when Pepe's moribund cystic lungs disallowed her from taking even sedatives during invasive procedures, let alone pain meds. She has proven her mettle. This is still your tough little nut, and she is resisting bravely as always. But she is miserable. She is suffering.
Tomorrow, she will take up the issue with her primary doctors and hopefully get some relief. Often it's a simple matter of exchanging one narcotic for another or adjusting doses. In the meantime, Pepe must get through the night. Her fever is way up, 103, probably an indication of the stress her pain is causing. Her O2 and PaCO2 are unchanged, 90 and 53 respectively. She is on ten liters via cannula, though she is having some trouble breathing through her nose. There was no X-ray today, so we'll learn the status of her pneumonia tomorrow, hoping for some improvement from the new drug cocktail. But for now, there are hours to overcome, a new narcotic dose at 2 am, and with luck, some sleep afterward. This is an incredibly tough process. It almost has to be experienced to be believed. Maybe that's one of the problems this weekend. But Pepe is -- entirely of her own volition -- committed to seeing this through with poise and dignity, despite whatever disbelief she encounters. For this, we stand in admiration. But we wish her more comfort and rest tonight.
We have not contacted the hospital, and don't know anything about the requirements for a defamation suit, or if they would pursue one. One reader did contact Fairview, though, and asked us to share their email as a post:
I simply wish to alert the medical staff of an online scam. For many months now, a girl who went by the name of "Gina" and her friend, Paul have been blogging about Gina's health crisis with cystic fibrosis. Many readers believed her to be in the care of the University of Minnesota. The posts were painfully descriptive, detailing the struggles of a girl seemingly on her deathbed. The site has since been shut down, but it was friendsofpepe.blogspot.com and entries can be recovered as the operator of the site, Paul, did not secure the postings.
"Gina" relayed information to Paul that made the medical staff seem incompetent at times. So far it doesn't appear anyone has turned down a transplant because of her scheme, but people have been thinking twice about the level of care offered at your facility and I think you have a right to know. Please forward this along to whomever it may concern.
The Google spiders are finally hitting the Friends of Pepe site, and pages are beginning to disappear. Before they do, we pulled down the second picture on the Friends of Pepe site, and are asking for anyone who might know her to identify her. We're not sure this is the same person as in the head shot used on the site: