“I want you to get in the car and drive directly to Primary Children’s. I’ll call ahead and let them know you’re coming.” I knew the measured, even tones in which the pediatrician spoke meant we were in for a hell of a day. “Don’t bother going to any closer hospital. If she has what I think she has you’ll need a pediatric surgeon, and there’s only one hospital in the valley that has one on call today.”
It was just after noon on Halloween 2015. For two days my daughter had been sick, which wasn’t uncommon. She was three years old and just started with a new preschool class a couple months ago. But this was different. Even sick, she was usually playful. This time she slept a lot. When she was awake she wasn’t herself. Day three — a Saturday — I took her temperature after a nap. 106 degrees. This wasn’t getting better.
“I think she has appendicitis,” the pediatrician said calmly. “If it’s burst, they will need to perform surgery. If she complains about the bumps in the car, that’s probably why.”
My wife and I hadn’t prepared for this. We walked out the door with less than we usually take to go shopping. But things went from concerning to EMERGENCY. I hopped on Interstate 15, then I-215. The needle hit 70, 75, 80, 85, 90, 95. For 25 minutes I sped across the valley while my wife soothed our daughter in the back seat.
Prepare for what you can; improvise the rest
The story you’re about to read details the most stressful month of my life. What we had hoped was a worrying but routine doctors visit turned into a life-threatening emergency requiring surgery. What we had hoped would be a routine surgery became a series of problems, complications and just rotten luck.
Within a couple days of surgery, a hospital case worker visited with my wife and I to ask how we were doing, whether we had adequate insurance, if we would need any financial assistance, and whether our employers would need written proof of our situation. Thankfully, we had no worries about the financial aspects of this Halloween nightmare. My daughter was covered under my wife’s high-deductible plan, and we had more than enough in the bank to meet the $5,000 cap.
Throughout this ordeal, I thought about the dozens of other children and their families we saw in the hospital. How many of them were not so well covered? How many of their families couldn’t afford to pay for the services they were receiving?
How many of their families couldn’t afford to pay for the services they were receiving?
My wife and I did not have to make any of the decisions about our daughter’s care with the added weight of financial uncertainty around our necks. We did not have the added stress of asking how necessary each procedure, every drug, and all the staff time would cost us and how we would afford it. Instead, we made decisions based solely on what we and the staff felt were best for my daughter at the time.
Our employers were very understanding of the situation. They supported our decision to stay with our daughter the entire time she was in the hospital so we could support one another. We had enough sick and vacation leave to cover the time and not have to worry about the next paycheck. Other parents were not so fortunate. There were infants being cared for by nurses because their parents had to work, sometimes many hours away.
I can’t say enough about the Ronald McDonald House, which had a space in the hospital where we often ate free meals served by volunteers. It was a wonderful respite and really helped so many families like ours during such a tough time. If you’re at all touched by this story, please consider donating to your local RMHC chapter.
When the final bill was tallied for what became a month-long stay in a premier medical facility, we were thankful that it was our insurance, not us, who would pay more than $120,000 for that life-saving care.
We learned the importance of being prepared for a true emergency.
The nightmare begins
The hospital staff were dressed in Halloween costumes. We were taken to a room in emergency where the doctors would figure out what we were facing. Batman came in to get us started. Nurses jammed an IV into my little girl’s hand just above the fingers, put a piece of cardboard in her palm to keep her fingers extended and wrapped clear medical tape around the whole setup. A pulse and oxygen monitor now blipped constantly.
“Are you OK, dad?” a nurse asked. I wasn’t. I was about to pass out. I hadn’t had much more than a cup of coffee all day, and now that the adrenaline was starting to subside I was about to crash. I stood up and started to walk around to keep the blood flowing and asked for something to eat. As I paced the emergency room, chewing a PB&J UnCrustable and gulping fruit juice, I called my mom.
How do you explain that for two days you let your little girl suffer with a ruptured appendix, and now here you are on Halloween fighting the urge to faint while your wife sits next to your three-year-old as she gets multiple bags of IV fluid and whiffs of oxygen from a mask? Out of a thousand kids with her symptoms, the doctors would tell us that night, 998 would have the flu — we had one of the other two.
“We’re where we need to be right now, Mom,” I said over the phone, now hoping a string cheese and a regular coke would set me right. “We’re at one of the best children’s hospitals in the country.” Tears welled up in my eyes as I said it, the words buried under several layers of mixed emotion.
Waldo came in to check on her. Her oxygen level was too low. Dangerously low. Waldo grabbed the nose tube and jammed the ends up my girl’s nose. With what little energy she had she fought like hell to keep that thing off of her. She screamed and punched. Waldo grabbed for the medical tape. My wife and I didn’t know a lot about oxygen levels at that point — not yet — but we damn well knew taping a plastic tube to the face of a toddler who was hours away from surgery wasn’t the best way to handle the situation. Where the hell was Batman?
The long wait
Waiting for surgery was excruciating. Eight hours passed before they finally wheeled the hospital bed to the elevator to take us up to the operating floor. Surgery was at 9 p.m. The doctor came to talk with us. She would try to go in laparoscopically. Three incisions. She would remove the appendix, clean out the infection, sew my daughter back up and leave in a drain to clear out any infection that remained. Recovery time averaged four days, but it could be two weeks depending on how things went. Two weeks? We didn’t really believe her. That would be crazy. Four days is long enough.
My wife left to gather the things we were in too big a hurry to get on the way to the hospital and what we would need to stay overnight. A nurse showed me to the surgical waiting room, painted in a jungle theme with lions and monkeys on one wall and sea animals on another. I sat alone in the row of chairs and thought about everything leading up to that moment.
I thought about my Nana, who died in May. I thought about my Grandma Marie, who had died just six weeks earlier and who was partly the reason we gave my daughter her middle name. Halloween was Grandma’s birthday. It was the first time in years I couldn’t call her on the phone to wish her a happy birthday. As I sat in that waiting room, I talked to her anyway. I just hoped she could hear me.
My daughter made it through surgery just great. Everything went as expected, with most of the infection cleared from her abdomen and a few small incisions bandaged up on her belly. She also had a drain, a plastic suction ball connected to a tube that fed into the space where the infection had been. The drain was there to remove any remaining goop so the infection wouldn’t return.
We settled in that first night thinking the worst was over and soon she would be running and playing like herself. I wish I could say recovery was smooth and four days later our little girl was back home and getting back to normal, but that isn’t how it happened. Nearly everything that could go wrong did.
The twisted road to recovery
The first few days she slept a lot, which was to be expected. She didn’t have much appetite, and she was still hooked up to an IV and various monitors. The nurses checked her vitals every four hours, day and night, which she did not like. She was largely confined to the hospital bed while everything inside her sorted itself out. The hospital had hundreds of DVDs, and I would grab six or eight at a time hoping she would like at least one of them.
She wanted to go home — we all wanted to go home — but recovery takes time. Just walking was a struggle, especially with the IV still attached to her hand. The hospital room wasn’t cramped, but it wasn’t spacious either. My wife spent her nights with our daughter in the hospital bed while I slept on the couch. Every four hours, the nurses came in like clockwork, taking her temperature, checking her blood pressure, and giving her acetaminophen or ibuprofen in alternating doses.
By Tuesday, three days after surgery, she was still running a fever and complaining about pain in her stomach. The drain didn’t seem to be doing anything, and then suddenly chunks dislodged and started flowing. We hoped this would spur the recovery we so desperately needed to see.
We tried to entertain her to pass the time. There were movies, toys, crafts. Despite her protests, we got her into a wagon and wheeled her down to the activity room to play with some paint. The staff insisted it was time for her to start walking again.
Every step was a fight, with her screaming and crying and refusing to walk. The emotional toll on our already ragged psyches was brutal. Sometimes the nurses would have to take over and make her take the few steps they needed to see. Moving 10 feet was a 30-minute battle that left her and us exhausted.
On top of that, her digestive system wasn’t yet functioning. The little food she ate came back up. She wasn’t getting any calories from food, and she wasn’t drinking much that would help either. After a week in hospital, the staff decided she couldn’t go on without calories any longer and would need to be fed intravenously.
They call it a PICC line. The thin plastic catheter runs through a vein in the upper arm just above the elbow, bends around the shoulder and ends just at the entrance to the chamber of the heart. It allows a patient to get liquid calories and fatty lipids, along with an IV drip and medication, directly into the bloodstream. A special team would come to our room, where my girl would be awake but sedated while a specialist would thread the tube through the vein and then take an X-ray on the spot to see whether it followed the right path. Because it is a sterile procedure, mom and dad were asked to wait outside for the 20-30 minutes while they worked.
We waited anxiously in the small sitting room down the hall, tense with concern as we waited for word that everything had gone well. It had already been 40 minutes with no update — longer than we were told it would be. Suddenly, alarm lights flashed and a voice over the PA called “Code Blue, Code Blue” and dozens of staff rushed down the hall toward our room.
The girl across the hall, who had just been moved from the ICU an hour earlier, had gone into cardiac arrest. My wife sobbed as we tried to cope with it all. All I could muster was, “It’s not ours. It’s not ours. Ours is going to be fine.”
After an hour, the specialist came out. The routine procedure was anything but, and it took three tries before the PICC turned the direction of the heart. But it was finally right, and she could begin IV nutrition later that day and have the regular IV line in her right hand removed. For the first time in a week she would have the use of both hands.
Another day, another unexpected setback
The nurses wanted to see her walking more and more. There were four checkboxes on the room’s dry erase board to tick off the four walks they wanted her to take each day. She continued to fight, and when she would grudgingly begin walking she would get angry if anyone tried to show support. “Stop cheering!” she would yell. She would walk, but she was not happy about it and you couldn’t be, either. Her walks a week out from surgery were now a bit less than 90 feet down the hallway and back.
Later that Saturday afternoon, we realized the tube connected to her drain — the one that was there to clean out any leftover bacteria to prevent a recurrence of infection — had a split and was no longer holding suction. The staff pulled the tube out and planned to scan her on Monday to see whether there was anything to be concerned about still in her abdomen.
Things were looking up that Sunday, and the surgeon told us if she looked good on Monday they might skip the scan altogether, take her off the IV drip and see how she responds. If all went well, we could be home that evening.
Come Monday, her fever was back. The team opted to perform the CT scan to see what was going on. Aside from the concern about infection, her bowels still were not functioning normally, and she was not eating or drinking anywhere near what she would need to be OK without IV nutrition. In order to get the CT scan, she would have to drink a large Styrofoam cup of apple juice spiked with contrast solution. She was only drinking 8 to 10 ounces of water a day up to this point, but she would have to drink more than 20 ounces in two hours for the scan. How could we possibly convince her to take in that much liquid when she wouldn’t even drink that much at home prior to all of this?
One nurse had an idea: They would have a tea party in the room. All the adults would get 4-ounce cups of apple juice, and my daughter would get a 4-ounce cup of juice with contrast. Every 10 minutes or so, the nurses would come in for another glass of “tea,” and if she drank all of her tea from the big cup, she would win an electric keyboard. We dutifully poured “tea” every 10 to 15 minutes, and thanks to the lure of the keyboard, she managed to drink enough contrast to get the scan at 7:30 p.m.
The CT room was painted in a pirate theme, with the CT machine outfitted like a ship. She laid on the table, while her mom and I put on vests to protect ourselves. The table slid her into the business end of the machine and it whirred to life. Soon we would really know what was going on in that little body that struggled so much to recover.
The scan showed what we had feared: There was still more infection that hadn’t been removed because of the failed drain. They would need to sedate her and insert a new drain to clear it out. On Tuesday morning, the nurses wheeled mom and daughter, still in the hospital bed, down the hall and into the elevator to put in the new drain. Inside the Utah Jazz-themed room, she was given more sedatives and we again kissed her goodbye while they performed the procedure.
The doctors removed a significant amount of infection from the abscess and then put in the drain, which would stay in for two to three days. From there the roller coaster continued. Every positive sign had a negative right behind it. Because her system wasn’t working, gas was building up in her intestines and causing her great discomfort. She continued to throw up over the days because anything she ate had nowhere to go.
With all the air in her abdomen the doctors worried she might have a hole in her bowel. Thankfully, we avoided that surgery. But an obstruction was causing problems, and there was concern another surgery might be in order for that. The discomfort kept her (and us) from getting a good night’s sleep. By this point we had been in the hospital 18 days.
Finally, going home
Despite the difficulties, the doctors told us they were waiting to see her drink enough liquid that they could feel comfortable sending her home. She needed to drink 36 ounces in a day to get the all clear. She hadn’t had more than 12 ounces in one day since we had arrived, outside of the CT scan tea party. My wife and I were both stressed about the whole situation, having lived our lives in the hospital for three weeks with wildly swinging emotions and what seemed like just enough progress to give us hope, but not enough to truly be optimistic.
Then on Nov. 20, my wife’s birthday, the doctors came in that morning to tell us we were heading home. They felt like my girl might be the type of patient who recovers better in her normal environment by now. We were ecstatic. My parents, who had flown in for several days to help us, left a couple of days later with everything seemingly returning to normal. But it wasn’t to be.
Another cruel turn
By Nov. 23 she was again not feeling well. She hadn’t been able to drink as much as she needed, and though we hated having to do it, we brought her back to the ER that Monday night. She got yet another IV, this time in her hand again since the PICC line had been removed when we left days before. An X-ray showed there was still a bowel obstruction, and we were going to be admitted back to the hospital, potentially for another surgery to clear it.
My daughter was very weak when we brought her in, and the doctors decided to insert a tube through her nostril and down her throat into her stomach to try to keep her from throwing up because of the backup, to relieve pressure, and hopefully to loosen the obstruction. When they started to put the tube to her nose, she lashed out like a caged animal. With every bit of energy she fought the two nurses who were trying to insert the tube. So feisty was she that they had to wrap her arms in a pillowcase behind her back in a makeshift straitjacket and hold her head straight while she thrashed and screamed. They said they had never seen such a small child fight so hard. It was only vaguely reassuring.
We were put into our now third room on the same floor we stayed the previous three weeks. The staff that had been so happy to see us finally head back home days before were now wondering why we were back so quickly. You could tell they weren’t used to this, either.
The next day, a surgeon we had not previously talked with made the rounds. He had looked over everything and suggested we do another CT scan to see whether there was another abscess. She would need another PICC line, and we would likely be there a week to wait for improvement before discussing additional surgery. He believed she would get better with it, and we really wanted him to be right. Another week in the hospital and then potentially another surgery and recovery seemed an impossible fate.
This time there would be no tea party; they could pump the CT contrast into her stomach through the nose tube. The scan revealed a small abscess that they planned to treat with antibiotics. She got another PICC line for nutrition. We spent Thanksgiving at Primary Children’s. She gradually started to improve, asking for real food along the way, even though she wasn’t allowed to have it because the doctors wanted to make sure she didn’t push too hard too fast and suffer a setback.
This stint in the hospital felt different. Progress was more pronounced and the setbacks were fewer. It was a waiting game. On Nov. 27 she was allowed to have solid food again, and her bowels started working. The next day, we were allowed to go home again.
What should have been a very happy day was, however, bittersweet. Our wonderful dog of eight years, Chloe, had also fallen ill while we were in the hospital. My wife had taken her to the vet the day before, and the bloodwork revealed she had leukemia.
A couple hours before we were discharged from the hospital, the vet called to tell us Chloe’s body had given out. We left Primary and drove straight to the vet’s office to say our goodbyes.
Be thankful for your todays and your tomorrows
It’s difficult recalling this ordeal. It was two years ago, which seems both so close and yet an impossibly long time ago. I no longer fear every fever or stomach ache is going to send us rushing back to the hospital. But for all of us there are still scars.
For months afterward, my daughter would play doctor or nurse, and she was all too realistic. It’s terrible to watch your daughter tell her dolls they have “dang appendix” and that they will need surgery, while she checks their blood pressure and temperature and tells them they won’t need any of the dreaded tape.
It was hard to balance the emotions of day-to-day parenthood with the very raw feelings of doubt you had for weeks about when you might be able to even come home. You feel guilt for getting angry when your child does something and then you think about the people you met in the hospital — the woman whose three-year-old was in the ICU with cancer and might not survive, or the five-year-old who was hit by a car and pinned underneath the burning hot engine block before he was flown by helicopter from a state away for treatment. That’s suffering, and yet some of the people in those positions were the people happiest to still be there, talking about tomorrow.
Like most parents, I lose my patience. I yell. I sometimes let my emotions get the better of me. I also laugh and smile and marvel at the difference time can make. I went to bed that Halloween, a few hours removed from surgery, uncertain about the days ahead. But I was very, very thankful my daughter would be there to share them. That thankful feeling is the one thing I want to be the same when I go to bed tonight.