It had really been too long, don’t you think, since we holidayed at the hotel on the hill?
Last Sunday, Patrick wasn’t quite himself. He was AWFUL in church! And then I took him to his nursery class only to be pulled out half an hour later by the concerning news that he was vomiting.
And oh boy was he! He was covered! So I wisked him home, changed his clothes, drained his belly, and put him to bed. He slept 3 hours. Straight.
At 4, we got him up to go to Sunday dinner with my family. He went to play with his cousins, but then came back quickly and asked for Brian to hold him. And just layed down in his lap.
NOT normal.
Then he got shivery and started to get goosebumps. We knew we had to go. These were the early signs of rigors again and it was almost certain that he’s have a fever of 103 or above within an hour.
We said quick goodbyes, hopped in the car and drove straight to the hospital. Halfway there, his fever shot through the roof. He was trembling and every few minutes would shake so badly that it was almost a convulsion. He was terrified. So was I.
We called ahead and told the GI on call that we were coming. Thank goodness it was Dr. Pohl, a GI whom we trust and who has taken care of Patrick at his worst. He knew we needed to be careful.
So, he had us go straight to the ER. They took his vitals and he was admitted immediately under the septic shock protocol – level red. His temp was over 104, his heart was racing and his breathing was shallow.
You know you’re level red when the doctor comes into the room.. immediately. Tailed by a nurse practitioner. They did a quick evaluation and ordered several STAT labs, including blood cultures. The nurses were running. Patrick was miserable. No one had given him anything for the fever in the rush to get him treated. However, fluids were running and they started antibiotics next.
With extra fluids, his heart rate started to come down a bit and his blood pressure looked better. We asked permission to start his TPN. (He’d been on his break) and got it. They finally got some tylenol and started to feel better. We watched Elmo in Grouchland 3 times.
However, the first antibiotic they gave him caused problems. For some reason, the pump gave it at twice the prescribed rate.
And then his neck started to swell right where the central line catheter entered his jugular vein.
So they stopped the TPN and the next antibiotic and we got to take a trip to X-ray to make sure that the line was still viable.
The good news is that it was. The bad news was that Patrick was developing hives. Probably a reaction to the med going in too fast.
So they restarted the antibiotic, but didn’t let us restart the TPN.
Mistake. The next drug was vancomycin. With the histimine already in his system, Patrick had his first every “red man’s syndrome” reaction. He turned beet red and started to itch.. everywhere.
Finally, we got some benadryl and all the redness and swelling and hives went away.
And then they admitted us to a room.
Because we’d run to the hospital, we only had a diaper bag with us. None of the usual supplies. So we had to jury rig a drainage system for Patrick from the parts the hospital could find. It worked, but it distracted the nurse and it was past midnight before she got the maintenance fluids (like TPN) running. Scary, but Patrick did ok. With tylenol, benadryl, and antibiotics on board, he was back to himself.
They watched him closely through the night and then for most of the next day they asked us to keep him on monitors.
This was a bit tricky because he doesn’t like to hold still enough for them to stay attached, let alone read. But we did our best to entertain him on the bed.
We made the choice this stay to let him have a big boy bed for the very first time. This was nice in that when he fussed during the night I could just crawl into bed next to him and cuddle him back to sleep.
It was challenging, though, in that I snore. And our second night in the hospital, he let me know it. Things started out ok. After watching 4th of July fireworks and the life flight helicopter from his hospital room window, he went to sleep fairly easily.
However, a code on the floor woke him at midnight. He jumped up and his g-tube got caught on the bed rail and got tugged. It stayed in place… but was very sore and we had an adventure trying to check to make sure it was still ok.
He didn’t sleep again till 6 a.m. He’d almost sleep, but I was so tired I’d fall asleep trying to help him sleep and the next thing I knew a little hand would be patting my face and Patrick would imitate my snoring. I was keeping him up.
Thank goodness for kind nurses who take toddlers for walks at 5 a.m. to their mommies can sleep. And for other kind nurses who will tiptoe around all through the day shift while little boys make up for staying awake all night.
We stayed 72 hours in the hospital, waiting for the blood cultures to grow to explain the fever. They never did. Either it was viral (which seems unlikely, given the quick recovery)… or the bacteria never got into his line.
Meanwhile, as the above pictures demonstrate, we learned how to keep a 2 year old entertained in the hospital.
This is good news, though it does make me nervous as we only gave 3 days of antibiotics and are now home without any further treatment.
So far, so good.
Just a little reminder to me that I’m not exaggerating when I call Patrick medically fragile. Things can go from OK to life-threatening at the drop of a hat.
Hoping we don’t have another scare like that for a long, long time!
Patrick Hoopes 