Murphey's Law

We enjoyed another night at the brand new Homewood Suites in Lynwood. Although we weren't able to enjoy the pool again, it was nice to have such posh accommodations. Caden has been quite a bit more tired recently, so he went in to sleep at 8:50PM. This left me plenty of time to read to my heart's content. Exhaustion came sooner than I thought, so I prepared the couch after finding Caden sprawled in the exact center of the King-size bed. At an angle, no less. Hey, after months of hospital beds, I was more than happy to take the couch and let him hog the comfy bed. He's more than earned it. 

That is until I couldn't fall asleep due to screamed conversation in the room next door. I imagined them to be college age, loud, drunk males. As their party grew in both decibel and time, my patients grew quite thin. I had spent three hours sitting at a park waiting for RMH only to end up sleeping next to some party animals? So the lessons continue. Patients is the subject. 

I subtly nudged Caden over onto his own spot and curled up onto the very edge of my side. He was still quite sprawled, but had moved enough to give me a sliver of quiet from those uncaring males. Don't they know to be quiet? A hotel is no place to scream that late at night. Or ever, for that matter!! 

As I was drifting off, with the door closed between the room and front room/kitchen, I hear more screaming. My patients was now gone. I called the front desk. Even camping in the wide outdoors asks you to quiet down after 10:00. It was after midnight. And I was tired. The list could go on to name all the reasons I needed a good night's sleep. And here they were, all macho testosterone, screaming as if they owned the place.  It took a few minutes, but it got pretty quiet, pretty fast. I love being listened to. Especially when I'm a crotchety old miser ready to pound on the door myself. They should be grateful I got someone else to do my bidding. I envisioned using my fists and my words to make them shut up!

I watched the clock change to 1:00 but don't remember anything after that. Until Caden woke me with nausea. In a bucket. Near the bathroom. As I was grabbing him medicine, towels, and water, my mind kept screaming how tired I was with how long his nausea has held on. By this time, he's usually done. And here he was at 6:50AM throwing up what little he had to eat the day before. I started the day more tired than the night before. How does that happen? Oh yeah! You have a sick kid. Got it!

Since we had Clinic this morning at 9:00, we headed back to Seattle at 8:30. I had left the thermometer in the car, so Caden took his own temperature as I loaded up. Nothing of consequence! We fist-bumped and happily talked all the way there about how awesome it was that this was the only round that he hadn't had to go back to the hospital with fevers. Little did we know we were jinxing ourselves. Because just 2 hours later we found ourselves sitting in the ER, fresh from Clinic, fever raging. 

We figured that he'd need platelets, so we expected to be there for a few hours. Sure enough, the results came back at 9:40, it takes about an hour to order them, so we were looking at about 10:40 start time, 11:40 end time. At 10:20, our nurse came in to get base vitals for the transfusion. That way, 15- minutes into the transfusion they can take vitals again to monitor adverse reactions. This was the first indication that we might have a problem. He wasn't too high, but it was getting kind of dicey. She said she'd check again in 15 minutes. Shortly after that she wheeled us down, personally, to the ER. Where it could have felt like déjà vu, it only felt like a dream. Just two hours ago we were happily talking about this very issue. And here we were- getting admitted for the very thing we felt fortunate not to have happen. 

Three antibitics were ordered after blood cultures were drawn. As his fever edged higher and higher, my fears grew just as much. This is the very reason we need to stay close. Because in just two short hours, Caden went from feeling great to 102.0. That is dangerously high for a child with absolutely no immune system. ICU was dispatched and asked to watch his progress. Or lack thereof. 

Obviously this solved the problem of not knowing where we'd sleep the next few nights. I was even anxious to get off of the hard, plastic things they like to call chairs. It was not pleasant. However, as the last antibiotic was administered, Caden started to itch. Bad! He was literally trying to claw his skin off. This...

And this...

Had us pressing our nurse button with fervor. As the hives pressed on, adding more places to not-scratch, Caden became a wide-eyed mess. You could just tell he wanted to run. The intense urge was strangling him, pushing him past his limits. Limits that have been tense since January. And there was nothing to do but wait. And in the ER, wait could mean hours, sometimes. Anxiety is a funny thing. You feel like you can't possibly have any more, and then you get some and realize how little you felt it just moments ago. It has a way a building to fever pitch. And then growing some more. Now I had to worry about fever, immune system, antibiotics, admittance, lack of appetite that leads to feeding tube, and now hives. And we had no idea how long it would take for relief. 

She finally, finally brought the pill. And it blessedly started working fast. And then his fever spiked again to a new high while his blood pressure dropped to a dangerous low. And in rushes the ICU. And in rushes my emotions. And out rushes the last of my patients. Clearly, I am not learning fast enough. 

They finally got his fever contained enough to feel comfortable to move him to cancer care. We got the best view, again. The one that looks over the river with views of downtown, the Space Needle, Washington State arena, and trees for as far as the eye can see. And peaking out above some clouds, Mount Ranier. Beautiful! It's so nice to be able to turn from the gloom and see the sun shining on someone else's day. I can appreciate that kind of beauty. 

Once he was switched from ER bed to cancer care bed, the shakes came on with a vengeance. The fever was climbing. And fast. He went from 100.5 to 103.0 within 15 minutes. The highest yet. Again, ICU and Oncology were called to come check on him. His blood pressure was also dropping, not too much, but dropping. And once again, as doctors were taking turns looking over my son, I looked over the expanse of nature and man. Because just as houses can be present but not detract from the beauty of nature, so can dread be present and not detract from the beauty of sunshine. 

He is sleeping now, tucked up in bed with minimal blankets to stop the increase in temperature. I am ready for bed, waiting for the nurse to bring him his last antibiotic of the day. Sleep will hopefully be a needed distraction from the reality we find ourselves in. 

As I was making the long walk to the car that we parked this morning on the opposite side of this labyrinth hospital, I  passed by a display that changes every few days, adding different responses to this question, "What I want to be when I grow up______." Again, being in the right place at the right time, and this time, in the current state of depressed, exhausted mind, I saw a 12-year old girl, Audrey's response. "Alive." It hit me with such force that every moment in this hospital, and around the world, someone is simply wanting to be "alive" when they grow up. My worries faded to gratitude for the "health" of my son. Fever or no fever, Caden is alive just one more day. And the prognosis is good that he will stay that way for many more. Today was long. Today was exhausting. Today is nearly over. Tomorrow is another day. And we're going to make it count.