Mysterious bumps, a grumpy mom, and another hospital stay, Saturday, October 3rd

My throat hurts, I’ve had two nights of crap sleep, and I think I might yell at someone soon. Probably an undeserving nurse, or an underslept resident.

We are in the hospital again, and have been for two nights. Tristan and I drove down to the city Wednesday for a chemo appointment on Thursday. Thursday morning I called our outpatient nurse to give her a heads up that Tristan had the sniffles, which began on our drive down, as well as a mild rash. The nurse said that, short of fever, the runny nose wouldn’t stand in the way of the chemo. She was more concerned, however, about the rash, and asked if I didn’t think it might be chicken pox. I said it didn’t look much like it, so far as I could remember what pox looks like. I just wanted to make sure the dozen or so bumps got looked at in the clinic.

Our appointment wasn’t until 3pm, so Tristan and I got up slowly, had breakfast, went running, went walking, and ordered gyros for a take-out lunch.

Because of Tristan’s sniffles, he and Bianca, his Family House love from last week, couldn’t hang out much. Nevertheless, Bianca gave Tristan two gifts, now his most treasured items — a red Power Ranger and a Paw Patrol outfit. Now I’m very glad I kept Tristan away from Bianca and made him wear a mask in the hallways — Bianca has no immune system to speak of.

At the clinic, Tristan’s rash assumed top priority over chemo. We saw Dr. Sabnis, our primary attending from the beginning of Tristan’s UCSF adventure. Sabnis was concerned about the bumps. He brought other doctors in to look. Nobody could say for sure that the rash looked liked chicken pox, but nobody was willing to saw it wasn’t. Sabnis attempted to get the Infectious Disease team to the clinic to have a look. The hours dragged on and the Hot Zone doctors didn’t show. Sabnis sent them some iPhone photos of Tristan’s skin. More time passed. Eventually Dr. Sabnis returned and said he wanted to admit Tristan to the hospital. I don’t think he managed to get a response from the Infectious Disease folks. He was extremely apologetic about his inability to confirm the possible pox, but adamant that even possible pox is a reason for admission. In immune-suppressed kids, chicken pox can be very dangerous, affecting not only the skin, but the organs, and sometimes causing tissue damage. Six pm was approaching by the time Dr. Sabnis came to give more bad news: there were no beds available for us, especially as Tristan would need a special isolation room, so patients would be shuffled and shifted and discharged and it would be a while. So, we’d need to go to the ER to get things rolling, meaning to have Tristan’s port accessed, start him on IV anti-viral drugs, and have blood taken for a PCR test that could confirm with absolute certainty whether or not Tristan has chicken pox. At this point, Tristan and I were not happy campers. No, we were miserable, hungry, tired, pissed-off campers who have lost the trail, been rained on, had their trail mix ransacked by a bear, and have blisters.

Dr. Sabnis walked us through the hospital to the ER and got things rolling…and we then spent four hours there. It sucked. Tristan threw a tantrum when his port was accessed. He was so tired and so mad to be where we were. On the upside, my brother and my father, who was in SF to bring Tristan and me home, as we were planning to return my brother’s car, came to see us after collecting our things from Family House.

It was 10pm Thursday night by the time we were taken to a room in the Oncology ward. The room has a decontamination chamber where docs and nurses have to put on robes and masks to enter. Tristan is not allowed out. Fun. Not.

Despite the time, Tristan and I watched Cat in the Hat and went to sleep at midnight. “Sleep.” He slept. I did not, much. It’s one thing to be tired and three and oblivious to beeps and lights and rhythmic clicking noises and nurses coming in every few hours to take vital signs and replace IV bags. It’s another to be mom, and pissed off, and tired beyond tired, and unable to ignore the three dozen stimuli within two feet of my head. Arrrggg. Overnight, Tristan’s sniffles progressed into a horrible, barky, raspy cough and I developed a sore throat. At home, Gary’s stuffy head blossomed into a raging cold, I learned the next day.

Yesterday — Friday — was a full day of waiting. Waiting for the Infectious Disease team to show up, examine Tristan’s bumps, and use their genius to confirm pox or no pox. Waiting for the blood test results to confirm the same thing. Waiting for lunch. Waiting for dinner. The Oncology team made its rounds mid-morning and were not able to say one way or another, pox or not. An Infectious Disease resident came by in the early afternoon and was not able to say one way or another, pox or not. Our nurse (Khara, our favorite, who once again claimed us) said the resident confessed privately to her that these did not, to her, look at all like pox. Finally, shortly before cocktail hour (which, sadly, does not happen at the hospital, despite my repeated suggestions that a cocktail cart be rolled around each late afternoon), the Infectious Disease team strolled in. They, too, were not able to, by eyeball, say what they were looking at. They explained that both in immune-suppressed kids, and in kids who have previously had the chicken pox vaccine, the pox present themselves differently from classic chicken pox — they can look like anything, I guess. Back to square one. So when are the bloody blood test results going to arrive? “Oh, well, it’s Friday afternoon now at 4:45, so it probably won’t be available until Monday.” My inner bear began to growl. Did they send the freakin’ blood to China for analysis? The Infectious Disease team departed to consult with Tristan’s Oncology team.

It was well into cocktail hour — the cocktail hour that wasn’t happening — that somebody from the Oncology team came to report that, as Tristan was clearly doing so well, after one more night of IV anti-virals, he would be sent home with oral anti-virals so long as no new bumps appeared overnight. He would be given his chemo so that he could stay on schedule.

So, now it’s mid-morning, after another night of beeping and blinking and terrible sleep, and we’re waiting, again. No news so far. Tristan’s cold has improved considerably.

On the upside, we had a great visit home last week. It was Tristan’s birthday, and the week was filled with things to celebrate that. Tristan and I joined Tomas and Phoebe’s school’s annual field trip to a Cal Fire helicopter base just a mile from the school. Tristan introduced himself to the firefighters as Tristan the Fireman. He got to sit in the chopper with a pilot’s helmet on. I thought I was being careful because the activity was outside, and Tristan wore a mask during the brief tour of the barracks.  Also in celebration of his birthday, Tristan had two separate playdates. These were his first encounters with kids his own age since he got sick. I thought I was being careful by keeping each date to just one, healthy kid. Finally, I took Tristan to visit a fire station in Eureka. He was given a ride around the neighborhood on an engine and a fireman took him on top of a hook-and-ladder to raise the ladder high in the sky. Tristan met the fire station dog, who showed him how to stop, drop, and roll. I thought I was being careful with extra hand-washing afterward. Ug, and now, payback. Mysterious bumps, a cold, and two nights in the hospital.

We also had a family birthday party at Noni’s house, which Phoebe attended dressed as a witch, and one afternoon Tristan helped my father assemble a switchboard for a soon-to-be-solar-powered barn. We had the usual fabulous walks up to the meet the school bus, as well.

I’ve got to go yell at someone now, but I’ll be sure to follow up soon with more news. We want to go home! I’m dying to see what these blood test results eventually tell us. I can’t decide if I’d rather they were positive or negative. Positive, I will think back on how attentive and careful our doctors were, and I’ll feel thankful that everyone kept Tristan safe. Negative, I’ll growl and grump and feel thankful that this particular mis-adventure is over.

Home! Saturday, October 4th

We are home! The drive home yesterday afternoon was exhausting, but, thankfully, Tristan slept from Petaluma to Honeydew – about three hours. Happy to be home!

The verdict, Monday, October 5th

Well folks, the verdict is in.

No chicken pox. The blood test result was negative.

On one hand, the larger, more important, rational hand, I’m relieved and happy. From the beginning of this adventure with Tristan I’ve been told that chicken pox is a bad, scary thing to be avoided. Badder and scarier than plain old chicken pox in plain old kids. Thank goodness my immune-compromised son doesn’t have it.

On the other hand, the grouchy, whiny one, I can’t believe we had to spend two painful days in the hospital being scared and unhappy, all because of a few regular old bumps.

Clearly this second hand is stupid and should be given a good whack by the first one. We are lucky have have such good, attentive doctors and nurses, lucky that everyone is keeping such a careful eye on Tristan, lucky to have great medical care, lucky to be home again so soon.

I’m going to go thumb wrestle myself. Hoping the smart hand wins.