I have a new vocabulary word this week.

Rigor:  (n.) a sudden feeling of chilliness, often accompanied by shivering: it sometimes precedes a fever.

Tuesday morning, I woke up to the wonderful sloshy sound of Patrick throwing up in bed. As is often the cause, his g-tube had stopped draining during the night, leaving his stomach overfull. I jumped out of bed, woke Brian to help, and went to the task of comforting, cleaning, and redressing Patrick. We made relatively quick work of it and by 5:30, Patrick had fallen back asleep in my arms. Brian put the bed linens in the washing machine and had gone to shower for work. I was drifting back to sleep myself.

A couple of hours later, Patrick woke up again. He seemed tired still and his eyes were bloodshot. My gut said that things weren’t quite right with him and I decided to keep him closeby. In fact, I even opted to take him in the shower with me to wash the vomit out of his hair just because I thought quick and close to mom needed to be priority. Then, I dried him off and changed his dressing, as it had gotten quite dirty, too, and we headed downstairs for breakfast.

Breakfast for Patrick usually means that I give him a cup of his special formula and some toast or tortillas or other finger food. Meanwhile, I draw up his medications, take the ethanol lock out of his line, and start his IV motility medication.

That morning, though, he was having none of it. He wouldn’t touch his drink and just started whimpering to be held. I was worried, so I took his temperature. Only 99.1 F.  But, as I worked to quickly give his medication, Patrick started to shiver on and off. He was whimpering a little and begging “mamma”.

This concerned me, so as I started the IV meds, I called Brian to tell him I was calling the doctors to request blood cultures. I’ve seen those “chills” before and knew they meant bad news. Brian agreed with the choice. Then I moved Patrick to the living room and offered to turn on Bob the Builder for him ( a.k.a. “diggers”) – his fall back comfort viewing when sick. He told me no. I asked him if he wanted doctors. He said “doctors” and reached for me. And then the shivering got worse.

Still no fevers, but I was worried, so I wrapped him in a blanket and started packing for a trip to the hospital. He started to really cry and his hands got cold as ice. Brian replied to my message saying I was going to the ER with an offer to come home and pack for me later. I knew that was right, so I stopped packing. I grabbed the diaper bag, a day’s TPN and medicines, and my spare keys (couldn’t find my keys and felt I didn’t have time to waste.)


It took 40 minutes to get to the hospital. Patrick cried and shook uncontrollably for the entire drive up. I valet parked the car – I didn’t dare take the extra time to find a parking space – and hurried into the ER.

I’d called ahead so they were expecting us and took us to triage right away. There they took Patrick’s temperature. 103!! The nurse gave him a dose of Tylenol and showed us to a room.

Thankfully, the Tylenol helped and Patrick’s temperature came down. Finally snuggled in my arms, the shaking stopped and he came back to himself quickly.

Dr. Jackson, his GI, was the attending this week, so he came and met us and prescribed some IV antibiotics. We agreed it was best to stay the night at least to make sure Patrick didn’t get worse or have reactions to the medicines.

By noon, cultures were drawn and antibiotics were running. I realized I had left so quickly I hadn’t even had a drink of water, let alone breakfast, all morning. So, I called a volunteer who came to sit with Patrick so I could eat and get my car from the valet. Then, we moved upstairs.

Patrick was old enough this time to “graduate” to the big kid medical unit. They gave me a choice and I told them we’d go whereever. With cold and flu season not quite over and an outbreak of rotovirus going around, I wasn’t disappointed when we were put with the big kids. In fact, I think Patrick kind of liked it. It meant more freedoms for him. And we were still able to walk just down the hall to visit with him favorite nurses.

In fact, the only difficult part about it was not having our primary nurses there. Patrick is far from a simple case and it’s easy to make mistakes. In fact, I’m always surprised if there isn’t at least one dangerous mistake made. (This stay was no exception, but things turned out ok, so I won’t go into it.)

By the time we made it to the room, Patrick’s temp was just over 100. He was active and happy and you’d never have guessed he’d been so sick in the morning. He didn’t need another dose of fever reducers again.

Bingo-PrizeesThe admission was busy. It takes time to give Patrick’s history and explain how to give his care. I asked for orders to be written “per mom” as often as possible. Thankfully, this resident was willing to oblige and I kept control of as much as the hospital would allow.

Finally, on our way back from a chest x-ray (to check for pneumonia) Patrick had had enough. He just snuggled down and fell asleep in my arms.

I didn’t mind. It gave me time to catch up with one of the residents who we love the best who cared for Patrick back when he was in the hospital all the time. She was as excited to see us as we were to see her, and got quite tearful when she learned that Patrick was now walking and talking.

We ended up staying two nights in the hospital, waiting for lab results to give some explanation of the sudden high fever. Besides our usual complaints of no sleep, though, it wasn’t a bad stay.

At first, they asked for him to be kept on monitors, which is nigh unto impossible for a 2 year old. He couldn’t hold still enough for them to read most of the time. So, we got lots of toys and books to try to help the job.

Then, they gave permission to turn them off. Patrick figured out how to push his IV pole and was more than content to spend whatever time was allowed wandering the halls of the hospital. We visited his friends in the Infant Unit. (All of whom beamed to see him grown and walking). We played in the play room with his favorite Child Life specialist. We went out to the patio and to the cafeteria and to the garden. We rode the elevators up and down over and over again. (I’d ask him if he wanted elevators. He’d make and elephant sound. Still don’t know if he’s disappointed I never ended up taking him to the zoo.)

And inbetween we took long naps and watched Bob the Builder and Cars on my laptop. Patrick figured out how to use the footrest of my chair as a seat, and then to climb up in to look out the window where he could see the road coming down from the University and a steady stream of cars.

Patrick thought it was very cool that “co-co Ja-ja” (Doctor Jackson) stopped by to play every day.

Finally, we made plans to go home without a diagnosis and without antibiotics and just hope that it had been a weird viral fluke. Then, half an hour later, the lab called to say that a bacteria had grown. He had Coag Negative Staph growing in just the lumen where his TPN was running. The fact that the sample drawn from his foot didn’t grow any bacteria probably means that we caught the infection just after it got in and hopefully knocked it out right away.


So, yesterday we were discharged to home with orders for blood cultures to be drawn for the next several days to verify that the infection is gone. Also, he’ll finish 2 weeks of IV antibiotics here at home.

A couple of good things came out of this stay. First of all, I’ve been trying to tell Patrick’s GI that his output seemed to be getting higher and higher for the past several months. But, having him in his care in the hospital really drove home just how high I have been trying to say it was getting. And it made him ask why.

So, we talked about how it was most likely a result of the surgical intestinal blockage we have known about for a long time. And how not much can be done without posing a risk to transplant. At first, Dr. Jackson said that maybe he’d prefer not to know how bad the blockage and resulting distension had become, if we couldn’t fix it.

Then yesterday we decided that he should discuss the problem and possible solutions with his transplant team in Seattle. He called and talked to Dr. Horslen and they agreed to look to see what could be done.

So, half an hour before we were supposed to leave the hospital, Dr. Jackson dropped in to say that he’d like an Upper GI contrast study… the one where they put contrast into Patrick’s belly and then watch it move through on X-ray to see what his intestines look like.

We decided to take advantage of the fact we were inpatient and quickly squeezed this test in before going home.

I think I’ll wait to tell more about what we saw until I’ve had a chance to discuss the results with Dr. Jackson this Monday. I’ll say this, though. If you’ve ever watched me drain a half liter of fluid out of Patrick’s belly all at once and wondered where it came from – well now I know. Patrick’s duodenum has stretched big enough to hold it all. Now we just have to decide if we try to do anything about it.

We got home last night around 4:30 p.m. Patrick happily went right to bed and slept for the next 4 hours. He got up at 8, played a while, then went back to bed at 10 and slept till the phone rang at 9:30 a.m. today. He was very happy to see his own room and his own bed.

And I am working hard to re-enter my normal life, to clean up the mess I abandoned on Tuesday, to keep up with the new medication schedule, and to find my sense of sanity and order again.

I much prefer the “rigors” of daily life.

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