Wednesday - September 26, 2007

Wednesday, September 26, 2007

Day +78. Yesterday, no matter what our journal originally said, was day +77 (we’re once again getting confused and losing count...not sure of days, dates, or times inside the hospital anymore!). Today is a day for PUZZLING SYMPTOMS and DIAGNOSTICS to explore possible causes and provide likely EXPLANATIONS; then the team forms TREATMENT PLANS.  

BY MORNING, JESSIE’S BODY IS POSING QUESTIONS FOR THE TEAM: Tuesday night into Wednesday morning is a long stretch. We are awake a lot. She spikes a low-grade FEVER (38.4c) for several hours, even though she’s already on antibiotic coverage with Vancomycin and Zosyn due to fevers over the weekend. Plus she’s on antifungal coverage with Ambisome and Voriconazol. 

So what might cause fevers? An active fungus that’s defying its medications, or a localized bacterial infection (perhaps not covered by or resistant to these two drugs) or a virus. Or...well...something that just doesn’t show up on diagnostics. Hmmm. Hopefully, today’s tests will give some answers.

So far, blood cultures and urine cultures, drawn every time she has a fever, has been negative for either fungal or bacterial organisms. Even better, a galactamanin test, which show peripheral activity associated with an active aspergillis infection, is now negative (until recently, they remained positive, due to the node in her lung). Due to this fever, they draw a new set of blood cultures, and we have to collect a new sterile urine culture. During the night, of course. 

Meanwhile, adding to the mix of complaints, she has PAIN in her sides. It is located mostly on the left side, below her ribs, and is TENDER to the touch upon examination. Twice. Once between 6:30-9pm on Tuesday night, and again Wednesday morning around 5am. It doesn’t resolve until we deliver rescue doses of Dilaudid to mitigate the discomfort. 

Her BELLY has been getting noticeable LARGER every day since the weekend. She’s had some fluid retention again (weight staying between 21.9-22.2 kilos, when it was down to 20.5-21k earlier this week). Today’s team feels her belly (including surgeon Dr. Lillehei) and it isn’t a “surgical belly” (hard, distended, full of fluid) that would cause them to think there’s internal bleeding that requires urgent surgical intervention. So it’s something else.

SCANS, SOUNDS, AND... Due to the combination of pain and persistent fevers, Dr. Leslie Lehman and the transplant team order a CT scan today. Due to the same-day scheduling, Jessie must undergo the scan while awake (aarrrrgghhh). She also has to chug 16 ounces of contrast dye in Gingerale in one hour. Burp. Belch. Ick. (Remember, until now the most she’s had to drink for the past 3 weeks was 6 oz. of tea...all day.) The dye causes diarrhea, by the way, which sets in with a vengeance before we even leave for the scan, and continues for hours afterward. Not to mention some vomiting. Ew, ew, ew.

The results of the CT scan also require some corroboration with other diagnostics, and so Jessie must also undergo an echocardiogram (she hates these, but at least the technician lets her use her own Aveeno lotion) and an EKG. The EKG requires 12 leads to be attached with adhesive sticky pads to the body. We ask them to snip each sticky pad into 1/4 its usual size, so there’s less adhesive to peel off afterward (this is a trick that one of our primary nurses Neusa taught us). Regardless, that’s a lot of adhesive. Ow-ow-ow. Anyone having fun yet? Assuredly, it isn’t Jessie. 

...AND HOW TO INTERPRET THEM: Okay, but it’s the RESULTS of the scans that we care about the most (though having the tests is plenty of trauma for Jessie, so she doesn’t care what the pictures look like afterward, unless it means more discomfort for her). Below is a summary of what the team says about the scans. 

The lung looks abnormal, but it’s probably the scar tissue and overlap where the lung was stapled closed after biopsy. It doesn’t appear to be a site that would make them suspicious of infection. The rest of the lungs...at least the inflated portions that they could really examine...seem fine. 

The heart continues to have some fluid around its sac. Yes, it’s the same pericardial effusion they have been monitoring for several weeks. It appears alarming on the CT scan, but can be better measured and evaluated based on an echocardiogram, with an EKG to provide a baseline about heart function. The cardiology team consults, reviews the scan and EKG, and examines Jessie. They come to this conclusion: the effusion has grown (from 0.6mm to 15mm) so it is now categorized as moderate in size. Yes, it’s larger, but it isn’t impairing cardiac function and probably isn’t a source of infection. How do they know it probably isn’t infected? Blood cultures would be positive, fluid on the scan would probably be cloudy and Jessie would be much more sick if fluid around her heart was infected. They recommend continuing to watch the effusion (daily echocardiograms for a few days), evaluate whether it’s continuing to grow or stabilizing. They expect it to resolve on its own, with time, as the fluid is slowly re-absorbed by surrounding tissues as Jessie’s body grows healthier.

Of most interest are the spleen, abdominal cavity, and colon. The spleen is FREE of LESIONS, as far as they can see. So the candida fungal infection seems to have responded well to the antifungal medications, and/or some of it may have been removed during the spleen repair. Around the spleen, some old blood remains, and is probably calcifying, but there’s also the surgical packing material that was used to slow or staunch bleeding during the emergency surgery a few weeks ago. These are all “artifacts” of the surgery that probably saved Jessie’s life, so their presence is not surprising, nor of immediate concern.

On the other hand, she shows inflammation (appearing as stringiness or striation of tissue) around colon, which is likely to be infection (possibly left over from the time of the surgery). Fluid has probably been seeping out of the colon tissue out into the abdominal cavity, once more collecting in her belly. The inflammation and the fluid are probably causing the tenderness in her belly. They are also indicative of an active infection, and may be causing the fevers. 

HOW TO TREAT THIS LOCALIZED INFECTION? Okay, this infection is leftover from surgery. Not too surprising. Happily, we covered Jessie with broad-spectrum antibiotics after surgery for a long time. Now they may change the antibiotic coverage to a combination that’s more effective against GI-tract organisms (adding Flagyl). The antibiotic course of treatment is 7 more days of coverage. 

Next Wednesday or Thursday, they’ll repeat the CT scan. If they see sufficient improvement, they’ll probably take her off the antibiotics, and monitor her. If she remains fever-free for 48 hours, they’ll consider it resolved. They’ll re-evaluate the plan, or her status, if any symptoms change dramatically between now and then. Over time, her body will re-absorb the excess fluid now in her abdominal cavity, taking it back into surrounding tissues, and her belly’s size will also decrease.

Of course, discharge will depend on resolution of the infection in her belly. She cannot be an outpatient until this condition is safely resolved. But again, what’s the rush? There isn’t one. She’s where she needs to be, so that we can safely address any outlying complications of the cancer, the transplant process, and the complications that have come up along the way, 

ASSESSMENT ON PAPER or IN PERSON: And guess what? She looks GOOD in person! Every day, she looks better. Today she took several steps. She drank a whole lot of fluid when asked to do so. She’s alert and full of opinions about everything, some nice and some not so nice (she even delivers an insult...IDIOT...at mommy again). So we know she’s on the mend. 

That’s why every team, regardless of scans and counts and EKGs and every other image and test and paper report, always come back to the real person...the patient herself...to make a final evaluation. Jessie’s overall wellbeing is the litmus test for how “sick” she really is, regardless of abdominal infection, pericardial effusion, and fevers. She’s really doing great! BELIEVE!

ON OUR TOES: Meanwhile, life continues on the North Shore. Daddy and other members of his design team are working with one of his academic clients, an independent school on the North Shore, on an architectural project right now. He’s spending several days there this week. After middle school, Sarah attends Select Chorus rehearsal, and then goes straight to the Ipswich Moving Company to prep for ballet and modern dance classes. She and daddy wind down their busy days with dinner and time at home. Friends drop off a meal...provide the ride to class...and so many other forms of hands-on help, we cannot even name them all. 

NOT SO FAR AWAY: Daddy is finding time, between work, home and Rotary, to plan the renovations to the house, to make it safer for Jessie’s return in several weeks. Friends are helping with many of these projects (insulation, barriers, driveway, landscaping, deep-cleaning, etc). He is also coordinating the installation of a new ventilation system in the house. The school is working on funding and equipment for the virtual classroom so Jessie can keep up with her classmates (she already has her laptop for her end of the two-way connection, courtesy of lemonade stands by her friends Molly and Maggie). Mommy is working on tutoring arrangements for the time beyond discharge, when we’re at Ronald McDonald House and Jimmy Fund Clinic, as well as internet connections so we can home up to her classroom using the laptop solution. 

All of us, one way or another, are working toward the time when we’ll be together again. It’s getting closer, day by day, week by week. BELIEVE!