Rainbows

Follow the underdog
Hold on his collar tight
This city loves a scrap
One day its gonna fight
Sticks and stones and animal bones
Can’t stop me from having a good day on a bad day

Kaiser Chiefs

Listening to satellite radio this afternoon in trusty “Blue Car,” on the way over from our brief “walkabout” that involved running a few errands and a cold-shortened visit to the gym, these lyrics resonated with me. It’s a recurring thought I suppose. Since February 10 we have had many bad days. If you look a little closer there was always some good within there although sometimes you really had to dig. This past week we needed a large shovel! First we had three of four full days in the Reuten outpatient clinic coupled with Audra and me juggling our NYC work commitments. Then comes the prize gold watch of a hospital admit yesterday. The evening hijinx included, but not limited to, nausea, high fevers, reaccessing Sylvie’s port, antibiotic runs, 6 IV fluid changes by midnight, more than a dozen poop diaper changes, and I know I missed plenty. It was this morning when I arrived with a few missed items and red rooibos tea for Audra that I heard the sniffling sounds of a cold that has now arrived at my doorstep as well. It’s amazing Audra hasn’t had so much as a sniffle since January. It takes a toddler to show me that without rain, and we’ve had a lot physically and mentally this week, we would not otherwise have rainbows.

A few Highlights: Audra returned to work! Save the Carl Lewis 40-meter sprint to make the evening train, she had a great day. Sylvie went to her Aardvarks music class! Sibel was so happy and excited to tell me what a great time they had she actually called me. She never dials my number unless a toilet backs up! Amazing day for Sylvie after all she’s been through. There are always good days even in bad days. We try to remember that definite fact even when the clouds are thick. You may be thinking it rained more then 5 inches this week, but I’m thinking about how good it is for our little garden and that we’ve been in the hospital most of the time anyway. It’s okay for you to think, “This rain sucks but I’m glad that I’m not stuck in the hospital either!”
--MICHAEL

Lisa, Sylvie’s nurse last night, came in around 1 am to tell me that Sylvie tested positve for “C. diff.” Huh? Just when I heard it all… “C diff”? I asked her to spell it for me. I was too tired to look it up. I registered that a culture from Sylvie’s poop tested positive, that she needed to take vancomycin orally immediately and that I couldn’t leave the room without wearing a disposable yellow coat and rubber gloves in case I was a carrier. That’s a lot to absorb when you’re half sleeping. I admit, I thought to myself that if I didn’t plan on leaving the room between then and 7 am, that I could just go back to sleep. So I did.
Lisa woke me again around 2:30 am to tell me Sylvie’s temperature was 103.8.
That’s the kind night we had.

Here we go again.

According to Wikipedia, Clostridium difficile [klo-STRID-ee-um dif-uh-SEEL] is a bacterium that causes diarrhea and more serious intestinal conditions such as colitis. People in good health usually don’t get C. difficile disease. People who have other illnesses or conditions requiring prolonged use of antibiotics and the elderly are at greater risk of acquiring this disease. The bacteria are found in the feces.

Every parent I talked to today in Ped Onc has had a hospital stay because of C diff so we are not alone.

Team Sylvie led by Dr. Steele dropped by around 11 am while I was on a work-related conference call. Dr. Steele said that Sylvie’s electrolyte imbalance is totally in line with her chemo and that her counts will continue to drop over the next few days. Even after a platelet transfusion on Wednesday, she will need more tomorrow because it dropped back down to 23.

Linda, the nutritionist, said that the positive culture for C. diff is definitely what has been causing Sylvie to be uncomfortable and not eat. Whenever Sylvie sees a roomful of doctors lately she yells, “NO TUBEY..NO NOSE TUBE” so Michael made all the doctors say out loud to Sylvie, “NO TUBE.” Dr. Steele and Linda had already agreed that Sylvie’s been traumatized by it so they are going to start running TPN this evening.

TPN (Total Parenteral Nutrition) goes right into Sylvie’s port and contains salts, glucose, amino acids, lipids and added vitamins. Linda said this way, Sylvie can get calories and we don’t have to worry so much about getting her to eat.

They also said we can expect Sylvie to be in the hospital until at least Tuesday.

Dr. Harris came by later and concurred. I had just given Sylvie a present that my sister-in-law’s friend gave to her but for the brief moment, we pretended it was from Dr. Harris so that Sylvie wouldn’t go beserk on him. He is way too nice to deserve her wrath. He also said that they had considered admitting Sylvie earlier in the week just for TPN “to fatten her up” because the last round of chemo is going to be rough. If this isn’t rough then I don’t know what is.

We have to keep searching for the rainbows.