Oh, how I wish that were a typo. We were thrilled to come home on Saturday afternoon after Luke’s 4-day PICU stay. He was doing beautifully. We put him down for a late afternoon nap and he awoke with a low-grade fever. Little concerned, but we gave him some Tylenol and went about our evening. He was still a little warm a few hours later, so we gave him a bath and put him to bed. We snuggled in for our first night at home, and less than two hours later, at midnight, he woke up screaming with…wait for it…a 104 fever.
We made a call to the neurosurgeon on-call, which happened to be his surgeon, and he ordered us in to the ER. Silly us thought that he would be there to lay eyes on Luke when we arrived. Lesson #1. Just because a doctor sends you to the ER does not mean he is the admitting doctor. We reluctantly arrived at Dell Children’s at the awesome hour of 2am. After a quick five-minute wait, they called us back and put us in an ER room. Usually I’d be excited to be whisked back so quickly, but I’ve learned lesson #2. If the ER is busy and you’re called back quickly, that’s not a good sign.
After a once-over by the nurse, clinical assistant and resident, the ER doctor arrived with some good and bad news. We needed to draw a blood and urine sample to rule out any infection, as well as shoot an x-ray to ensure his lungs were clear. At 4am, none of that sounds like good news. Particularly the “drawing blood” part. We mentioned that he was a hard stick, but it didn’t seem to phase the charge nurse. She was determined to get the draw. I knew she wouldn’t get it, but they weren’t budging on paging NICU, so I figured why not let her learn lesson #3. When it comes to her kiddo, Mom is always right. You can guess that her ego took a hit after sticking Luke and missing the vein.
A sweet nurse and our friend Janet (who never works the night shift – what are the odds?!?) were able to get blood from a scalp vein – pretty much Luke’s only good vein left. The doctor wanted us to start and IV and I enacted lesson #4. Just because the doctor orders it, doesn’t mean you have to do it. We refused. The only reasoning was to start Luke on some fluids because he was slighly dehydrated. But, I knew that was largely because he’d been on no feeds (NPO) for four days and just needed to nurse more. I don’t need an IV for that, I’ve got the two solutions 🙂
Around 6am, Miss “Even though I’m 16 I have attitude” Clinical Assistant came in to stock the ER room with new supplies. Of course I’d just gotten Luke to sleep, right? She saw his ID bracelet sitting on the bed and says (with major attitude) “Is there a reason why he’s not wearing this?” Oh sister. You need to learn lesson #5. It’s 6am, for heaven’s sake. Back off a little on the protocol. Oh, and my reply? “Yes, he’s sleeping put it on the bed and I’ll put it on when he wakes up.” (said with mom eyebrow)
At 6:30am (yes, we’d already been there four hours), the ER doc informed us that he and Dr. George had been on the phone for quite a bit trying to decide if they should admit us for observation or send us home. Ultimately, they wanted to admit us for 12-24 hours. Scott and I were less than thrilled. Luke was out of his mind tired as he hadn’t really slept all night. But the fever was concerning, so we agreed, thinking that we’d be in a hospital room in no time. Lesson #6. Never go to the hospital via the ER to be admitted.
I’ll spare you some details, but we were taken to a room SIX, count ’em, SIX hours later, at 2:30pm. Scott had to leave to head home and take the kids to Disney on Ice with his mom. Tickets that were bought before we knew all the craziness. And so Luke and I tried to intermittently sleep in a nasty ER room, with screaming parents, coding patients and no patience. I was teetering on the edge. At 10:30am, I asked to speak to the ER doc so we could get a sense of “the plan.” I didn’t end up seeing a doctor until 6:50pm that evening, 12 hours after speaking to the ER doctor.
Frustrated beyond belief doesn’t even scratch the surface in describing how I felt. I can tell you that I came within minutes of walking out AMA – against medical advice. Minutes, people.
When we arrived in the room, I got Luke to sleep and completely and totally, 100% fell apart. Like sobbing with tears flowing so fast they were landing on my pants kind of fall apart. It wasn’t just the past five days that had drained me, it was the past 11 months.
Then the phone rang and it was a collect call from an inmate in the county jail. And woke my sleeping baby up. I got Luke back to sleep…and he called again. Then I unplugged the phone.
People, I can’t make this stuff up.
To make a really long post a little shorter, we watched Luke overnight, observing him for a fever or any other concerning symptoms. At 9:45am this morning, we were given the discharge blessing for the second time in 48-hours.
All in all, we think it was a virus with some pretty horrible timing and nothing more than that. We have a slew of doctor visits the next couple of weeks.
But trust me when I tell you this, we are d-o-n-e, done with Dell Children’s. No more surgeries, no more ER visits, no more craziness. We are determined to break the vortex of the hospital. Now, if I can get God to buy in, we’re home-free.
How was your Monday?