In the past few days, I have given my daughter sugary concoctions and food items that I swore I would never keep in the house let alone beg her to take. She now has reason to believe that we have cupcakes in the pantry and that ice cream is an acceptable food for breakfast. That several types of juice and Gatorade have a home in our fridge. Swirly straws and various drinking apparatuses have been introduced to my stubborn toddler. The thing is, they are not enticing enough. Even the Capri Suns were purchased in hopes of enticing her to drink. Capri Suns--a treat only at birthday parties.
|She is holding her own face mask. The Child Life Specialist got it out to show her and Ellie just yanked it from her hands and put it on her face with the attitude of "uh huh! I know how this thing goes, girl!"|
My little bundle-of-energy isn't behaving like my Ellie. The spider monkey has disappeared. She has not tried to climb onto the kitchen island once. I know! She is a different child. Plus, she watched a movie. An entire movie. While sitting. The whole time. Snuggling with me. Did I mention it was a whole movie? As in more than 5 minutes? I would say it is glorious to snuggle with my little Bear, but I am sad because I know that she is behaving this way due to pain. . . and I cannot make it better.
How do you explain to a child that you put them through this pain to make them better?
On Tuesday, the day of her surgery, Ellie tricked us. The little turkey led us to believe that she was fine and dandy. Good to go. Chugging apple juice to the extent that I was a bit worried about the contents of her next diaper. Scarfing down ice cream like there was no tomorrow. Attempting [and succeeding] to climb over the railings of the hospital crib and trying to escape her hospital room--with her diapered tush hanging out of her gown. Ta-ta Dell Children's! The Bear is on the loose!
Ellie tiredly sat in that post-anesthesia care unit trying to sign along to Signing Time and the Wiggles. Shouting to everyone that her name was "Eeeee!" when asked. She charmed the pants off everyone! She was my Ellie. A little drunk, but still my spunky Ellie Bear.
Then. Suddenly. The Scream. Not an "I'm pissed off. Give me M&Ms" scream, but an agonizing scream. Pain. Severe pain. From my baby. Full body tensing. Panicked look in her eyes. The Scream of Agony.
Though not because pieces of her upper airway were scraped out, but because of pain from her bladder/ureter. Yes, she was grabbing the diaper area. She would scream for 10 minutes, then urine would gush out into her diaper and she would calm. Repeat. Repeat. Repeat. The vicious cycle finally slowed to twice an hour. It was so horrendous that the nurses finally requested the docs to come and look at her and were begging for a PCA pump [patient-controlled-anesthsia aka IV pain med pump].
Was it a UTI? Was it a bladder spasm caused by the anesthesia? An over-distended bladder? The doctors and nurses seemed clueless. I googled. I Facebooked. I tapped into my previous nursing experience. Mostly, I tried not to cry in front of my baby.
Ding ding ding ding ding. As it turns out, Bear's IV fluids should have been discontinued once she demonstrated that she could maintain her oral intake of liquids. As in, the IV fluids should have been shut off the moment we reached her hospital room. Once the IV pump was off, the excruciating pain decreased and the screaming ceased, but my Ellie wasn't the same little girl from earlier that day. She was cranky. Irritable. Hyper. An overtired type of hyper.
I was also puked on. Dried, coffee-ground-blood puke all over my clothes. The clothes that I changed into for sleeping. Yuck. Zofran was given which helped the vomiting, but caused the hyperactivity. Oh yes, FYI Zofran hypes up a child like crack.
Finally, around Midnight, Ellie calmed enough to fall asleep. Only to be woken up by loud beeping. I spent 2 years working in a PICU and I know my alarms. I also know that a lot of times they go off because the battery is low, the wire is kinked, or the child removed the lead. This alarm was none of that. Apparently, Ellie couldn't keep her oxygen [O2] sats up while sleeping and was dipping pretty low once in a deep sleep.
Introducing, the nasal cannula. Ever try to keep one of those bad boys on a little toddler? Yeah, even with the little sticky dots and tagaderm and even more tape, Little Miss had the cannula ripped off in record time. Fortunately, her skin remained in tact. I spent the remainder of the night vigilantly [in panic mode] watching her monitor and holding a face mask in front of Bear. If she turned, I chased her with the mask. With the mask, she would sat in the low 90s. Without the mask somewhere in the 80s. Typically, the upper 80s but everyone once in a while she would slip to 80%.
My persuasive powers allowed the ENT surgeon to feel comfortable discharging Ellie into our care. Who knew that batting one's eyelashes could go so far! In all seriousness, Ellie's surgeon and I go way back and she knows that I tend to be hyper vigilant [aka worry-wart / obsessive]. Yes, Ellie's O2 sats sucked while sleeping but chances are, they were low prior to the surgery--you know, obstructive sleep apnea and whatnot. When awake, The Bear was rocking at 96%. She has no signs of respiratory distress and everyone knows the best healing happens at home.
Since discharge on Wednesday, it has been a battle to keep fluids in her. We have tried various sippy cups, straw cups, dixie cups, swirly straws, regular straws, and the dreaded oral syringe. We have tried foods that count as fluids--yogurt, ice cream, applesauce. I even did the reverse psychology of "this is mommy's drink, not Ellie's". Five days of obsessing over every sip and every diaper. Five nights of laying with my daughter cuddled up against me, nearly kicking me off the bed as she moaned in between doses of pain meds. Five days and I believe she finally turned a corner.
Ellie woke up and drank 3 ounces of a Capri Sun without any coaxing. She also only took a 3 hour nap as opposed to a 5-6 hour one. She put together a few puzzles and she ate part of a donut. She signed along to "Signing Time".
I know that you all are thinking that I should have been prepared. The hospital discharge papers warn of a 10-14 day recovery. Yet, this was the Bear's 5th surgery and she has always bounced back quickly, even after her GI procedure. Even when ill with a high fever, Ellie tries to climb into the sink or escape through the dog door or demands a "sandwich" from Quiznos. My little Bear has proved to me over and over again that she is a little trooper and with this surgery, she has proved the same. She is strong. She is resilient. She is a trooper. While at times I felt helpless, I also knew that I could give her the only thing that others could not--I could be her mommy.