This is the story of Lincoln’s harrowing first Halloween. Long story short: Lincoln is doing great. We were discharged from the hospital yesterday, and today, while still a little dehydrated, he’s all hugs and giggles, his normal charming self.
This is kind of a long story. And the details are painful. The Friday before last weekend I caught a nasty stomach virus. Despite quarantining myself to the bedroom, Leslie caught it by that Sunday night. Leslie ended up in the ER on Monday evening for dehydration and low potassium. During this sickness we had some unrelated plumbing issues. Then just as we were starting to reestablish our routine, I wrenched my back on Wednesday night. It took another two days before things started to feel normal again.
On Saturday, Link was a little fussy but enjoyed our belated trip to pick up some pumpkins and vote early. Sunday, he napped a little longer than usual and had a low grade fever. By that night he had a 102.7° fever so we contacted his pediatrician who recommended alternating Tylenol/Advil and lukewarm baths to control the fever. Later that night his fever jumped to 103.8°. He threw up three times, all his personality and color drained from his face. His breath was quick and wheezing. We moved his crib into our room and kept a close watch through the night, eventually getting his fever down to around 101°.
The next morning we visited his pediatrician as soon as they opened, expecting a simple ear infection, naively for sure. His ears were clear. They did a blood test, Link’s first stick of many, and discovered that both his platelets and hemoglobin were low. The platelets were 51k, down from the normal 150k. So they sent us to Hematology at the hospital downtown. We’d been to the hospital for blood tests before when he was first born because they were concerned about jaundice so we weren’t especially alarmed.
At Erlanger, oncology and hematology share a department. It was Halloween so the ladies at the front desk were dressed as cowgirls. Ninja Turtles, super heroes, and Disney princesses roamed the halls, reverse trick-or-treating. Children with bare heads. One patient was dressed as Luigi (Baby Luigi, his mother explained, since he refused to wear the mustache). Our room had a dinosaur-shaped exam table. They pricked another finger. I promised Link that most Halloweens the blood was fake. And not his. After they dressed his finger we dubbed him Edward Bandaidhands.
It was a short wait while the doctor examined his blood. His platelets had dropped again to 40k. They explained this was not an especially scary number but combined with his hemoglobin levels they were going to admit Lincoln over night and test his bone marrow in the morning. I felt my eyes dilate and my face scrunch up. They mentioned Leukemia. A resident, dressed as a boxer, came in to ask more questions. Pocahontas and another cowgirl came in and gave us meal cards and asked about what types of toys Link likes to play with. We waited some more. Link, still not himself, endured lots of hugs before finally falling asleep in my arms.
We were assigned a room and relocated. We talked with Dr The Little Mermaid. Link needed an IV for fluids and eventually the anesthesia for tomorrow’s procedure. But cherubs have tiny, tiny veins. His most accessible ones were in his scalp but the first attempt failed to flush or draw, I don’t remember all the terms. They tried 3 or 4 other locations in his arms and wrists before calling in a nurse so experienced she still wore the traditional nurse’s cap. After over an hour total of poking Link had his first IV on the right side of his head. We dubbed him Linkutus of Borg and hugged him some more.
Leslie stayed with Link while I drove home to collect clothes, medicine, his lovey Bun Bun (half bunny, half blanket), and have a good cry in the shower. On my way back I got halfway down the street before I turned around. That morning while Link was still sleeping I drew a bunch of different jack-o’-lantern faces on index cards. During breakfast, before the pediatrician opened, we let him pick his favorite, three at a time until we narrowed down the one. He chose the classic with triangle eyes and nose and blunt toothed grin. We let him pick out a tiny pumpkin on Saturday using the same process. He had settled on a stripy orange and white one. I ran back into the house, grabbed a Sharpie and drew the face he chose on his little pumpkin before rushing out of the house again.
When I returned I learned that they couldn’t draw blood for additional tests from the IV they installed because the tube was too small so they were going to have to stick Lincoln again. This was so hard to watch. Link does not like being on his back, being restrained, or, as it turned out, being jabbed by pointy objects over and over again. It took countless tries by four different nurses to draw the blood (not including the ones who examined him and refused to try because they couldn’t find a vein they were confident in). One nurse’s hands were shaking as he rooted around inside Link’s wrist for what felt like forever. Again with the tears. Our poor pincushion.
That night despite the Tylenol and IV fluids Link’s fever got as high as 104.4°. Because of the procedure in the morning he couldn’t eat past 3am. When he woke to nurse at his normal time around 6am, Leslie had to hide in the bathroom while I consoled him. He eventually fell asleep on me until around 9 o’clock when we trekked across the building. As we passed through a waiting room, it felt like all eyes were on the baby with the IV attached to his head. It was impossible to make eye contact with anyone without choking up, their compassion and sympathy plain.
We met with more nurses, the anesthesiologist, the doctors. We couldn’t be sure we hadn’t already met some of them the day before, in costume. The procedure happened a little after 10am. They put Link to sleep in my arms, his body limp, his head heavier than I expected, despite the nurses’ numerous warnings. It was relatively quick, they drew marrow from his right hip bone near the small of his back. They installed a second IV in his left ankle and drew more blood. Apparently that took 6 or 7 tries. At least he was unconscious this time.
Leslie and I waited in the kitchen for the results while they waited for Link to regain consciousness. The doctor came in with a smile on his face. His bone marrow was perfect. I grabbed and squeezed Leslie’s hand, blinked away some tears. No troubling signs. It was probably a virus. They will do some more tests on his blood which will take another 48 hours or so but we might never know exactly what caused this.
A little later they wheeled Link back into his waiting room. He was still mostly asleep, oxygen tubes in his tiny nostrils, heart rate monitor wires still attached to his chest, his little head resting on a pillow, little body under his muslin blanket. He woke up slowly, nursed, and then came to life. Standing in Leslie’s lap, wobbling because of the board they taped to his ankle to keep the IV from shifting around too much, looking out the window, kissing mommy, and generally hamming it up.
They kept us one more night to manage his pain from the procedure, keep him hydrated, and ensure his fever stayed down. His energy and personality returned over the course of the day. Link was frustrated at his lack of mobility caused by the IV tubes coming out of his head and the board protecting the second IV port. That second port was unsuccessful at drawing blood so they had to do one final heel prick to check his platelets before we were discharged. They were already up to 81k. That foot port came out first which allowed Link to peak out into the hallway and charm an orderly to tears. This guy.
We finally left the hospital in the early afternoon. Link took a car nap, and transfered easily into his own crib. By that evening, he was crawling around the house, playing in the yard, and eager to ride around in his red tricycle. It’s amazing how fast he bounced back. We’re so happy to be home and relieved at the outcome of this harrowing experience. Here’s hoping next Halloween is a little less scary.