Ali Goes to UCSF

Short Story

After a trip to the ER diagnosed the issue swiftly, Ali spent two long nights in the hematology unit at UCSF Benioff Children’s Hospital, being medicated for and recovering from a serious blood platelet deficiency issue we’d previously never heard of called immune thrombocytopenic purpura (ITP for short). After returning home, we took a second trip to the ER for a high fever that turned out to be NBD. She’s good now.

Long Story

Disclaimer: This is really long and overly detailed, but I needed to write this for my own catharsis. Deep breath… and release!

Not Canker Sores

I first noticed dark purple spots on Ali’s upper lip and inside her mouth after she woke up from a four hour (!!) nap this past Saturday. Dr. Google provided no info other than “maybe canker sores,” and feeling like it’d be idiotic to call the doctor during off hours for canker sores, I decided to wait a day to see if anything else appeared or if they just went away on their own. She had had a stomach bug the previous three days, so I thought maybe they were related to the vomiting or something.

When they didn’t go away, we eventually did call the doctor on Sunday evening, sent pictures, and after some follow up questions, our pediatrician’s nurse practitioner, who is extremely holistic, competent, and emphatically trustworthy, sent us directly to the ER at UCSF to get lab work done.

“It could be nothing,” she told me. “Or it could be a quite serious condition called [didn’t pay attention enough to internalize the weird condition’s weird name]. The only way to tell is to get her blood drawn immediately.”

ER Trip #1

As far as ER trips go, this one was pretty tame. There were no blood geysers or snapped bones with which to contend. Our child was happy and frankly pretty excited to be going on an adventure to the doctor in lieu of her bedtime routine. Thinking I was thinking ahead– and optimistically believing the blood work would show our healthy girl was nothing short of the healthiest child they’ve ever seen– I took a few minutes to pack a bag with things we’d need in case we were there for a few hours… snacks, a water bottle, sweaters in case the waiting room was cold.

We were seen right away. Ali was a model patient, as she typically is around doctors. (The kid had never once cried because of a vaccine prick or had anything but positive associations around doctors.) She opened her mouth when the doctors asked, let them weigh her, take her vitals, simply said “ouch” when the nurse pricked her and inserted her IV, and a tear-free “ouch, you stop” when the nurse had to draw several vials of blood for lab testing. Our happy Ali was still our happy Ali, even as the clock struck 10:30pm… well past her bedtime.

We dimmed the lights and decided to get some rest while we waited for the lab results. Ali and I slept on the hospital bed, her little body curled around my 38-week pregnant belly. Michael somehow caught a couple of hours of jet-lagged sleep on the hard hospital floor. He had returned from a business school immersion trip to Copenhagen a mere 36 hours prior. It was supposed to be the last big push before baby #2 arrived. Ha.

The doctor came into our room around 1:00am and whispered to us in the dark while Ali slept. Her platelet count was a very dismal 4k. For reference, a healthy child has a platelet count between 150k-400k. A count below 100k is considered mild ITP,  below 50k is definitely in need of treatment, and anything below 20k is considered very, very serious.

We were transferred to the pediatric hematology unit for immediate treatment with an infusion of intravenous immunoglobulin (IVIg) to help spike her platelet count as quickly as possible.

Quick Biology 101 Diversion

For those who have forgotten their high school biology like I had, platelets are what helps your blood clot. Too few platelets, and you run the risk of bleeding uncontrollably. No bueno.

So those dark purple sores? Those were signs of internal bleeding. So was the rash that appeared all over her body in the hours we were at the hospital. So too were the bruises on her legs that I chalked up to normal toddler bruising. I blame my vaulting days for making me feel like a leg covered in bruises is “normal.” Whoops.

Thankfully, none of these signs of internal bleeding were immediately life threatening. And thank all the gods in valhalla, she had not sustained any serious head or bodily injury while her platelet count was so dangerously low. That would’ve been really, REALLY bad. Like I don’t even want to think about it bad.

Drugs

We were wheeled up to the hematology unit a little after we got Ali’s dismal results. Ali thought it was pretty cool to be pushed around on a bed while I rode along with her. She smiled and said “ooooooh” each time we rounded a corner. She wanted to push the elevator buttons. She was somehow still cheery, at 2am, after being poked and prodded, and I remained optimistic that this happiness would continue.

It didn’t.

We transferred into our new hospital bed in our (impressively large, private) hospital room, and all of a sudden the exhaustion hit. She didn’t want the pulse oximetry reader to touch her. The blood pressure cuff. The stethoscope. None of it.

The nurse tried to give her a dose of oral Tylenol and Benadryl (something they give all first time IVIg recipients in case of allergic reaction), and Ali would have none of it. She’d never had medicine before, just probiotics that taste like mild orange candies, and she sputtered and cried and coughed it all up. I asked if she could have the meds intravenously instead, and the nurse said she could. I still don’t understand why they didn’t just do that in the first place.

Around this time, Michael headed home on a 3am there-and-back to get some overnight provisions. A pillow. A cozy blanket from home. Some more snacks… the ones I had bought for labor and postpartum.

I wrapped my body around Ali’s and held her as the drugs pumped into her tiny body. First the Tylenol and Benadryl, then the immunoglobulin. We got a few hours of fitful, sweaty, uncomfortable sleep, waking each time the nurse came in to take Ali’s vitals– every 15 minutes, then every 30 minutes, then, after the infusion, every couple of hours.

Michael went home to sleep a bit. One of us needed to be rested if serious decisions needed to be made.

Hang Day

A gaggle of doctors and doctors-in-training arrived in the late morning (UCSF is a university research hospital after all) and informed us that they would be drawing her blood for lab work the next day. Today was a hang day.

So we made the most of it. Ali played in the children’s playroom, watched an epic amount of Peppa Pig, a few movies, and ran around the hospital in generally high spirits. Michael brought her sushi for lunch (her fave). Her nanny and her Oma came to visit. The nurses checked her vitals every four hours, which she wasn’t thrilled about, but all of our nurses that day were patient and kind, allowing Ali time to warm up to the instruments she had started to fear. It was all pretty straightforward and boring and wait-and-see-ish.

Night #2

By the second night, we had things dialed in a little better. I pulled the couch/second bed up to the side of Ali’s hospital bed so baby #2 and I could have a bit more space. Ali’s vitals were only checked every four hours, by a nurse Ali had grown to trust. I woke for all of them while she slept right through, including her 4am blood draw, only waking at the end to ask the nurse a sweet, “where’s my mama?” to which I replied, “right here.” She promptly fell back asleep.

Improvement

We got Ali’s blood test results later that morning. Her platelet count had skyrocketed to 47k. Still not perfect, but also no longer imminently dangerous. We would get to go home today.

The doctors also informed us that her neutrophil count was dangerously low, a common, temporary side effect of the IVIg infusion. She was considered immunocompromised and shouldn’t be around anyone sick, they said. Although preschool was starting the next day, it would have to be postponed until after a third blood draw, scheduled for the following week, showed improved progress. Also, because she was immunocompromised, any fever above 100.4 degrees Fahrenheit merited an automatic trip to the ER for IV antibiotics, something we have worked hard to avoid up until this point in her life.

Supermom No More

Discharge took forever, and as I saw the finish line moving further and further into the future, I started to lose my cool. I had somehow been in supermom mode for the past… long time if you include the stomach bug that preceded this whole shit show, remaining surprisingly calm, pulling from some mystical reservoir of energy. But my patience had run out, and I felt unable to rein it back in. I desperately needed to clean the house, to go grocery shopping, to catch up on the last few days, to get out of there.

Michael and I have parented Ali with a simple philosophy: “Chill parents. Chill kid.” I was no longer a chill parent, and she was, therefore, no longer a chill kid.

Our easy-going girl was inconsolable– and the on call nurse wasn’t particularly patient with her tiny patient. To escape the madness and find a new rhythm, we headed down to the playroom to kill time while the hospital took their sweet time processing paperwork. Ali played joyfully. I sat there in a bit of a stupor. One of the playroom volunteers showed Ali to an easel and paints, which Ali proceeded to brush onto her hands while still wearing her IV. Cleaning that mess was fun little turquoise icing on my UCSF hospital stay cake.

But praise be… around 12:30, we were finally allowed to go home. And it was so sweet to go outside and see the sun and drive in the car and arrive at our house and settle into our kitchen for a meal and onto our bed for a nap and onto the couch for some more movies and rest.

But Then…

Nighttime sleep didn’t come easily. Ali was tossing and turning in the bed with me. Sweating. She felt hot, but the thermometer kept reading 98.9. She kept waking up whimpering and crying, and all of the usual things that easily console her were not working. Eventually she’d fall back asleep for a bit, but fitfully. I could swear she felt hotter than 98.9.

So at 3am, I broke out my fertility thermometer, and I watched as her temperature climbed well above the thermometer’s capabilities, well above 100.4.

We were wheels up and out the door in five minutes. Michael knew the way to the hospital without needing Google Maps.

They drew blood and got her started on the dreaded IV antibiotics. In the end, we discovered that both her neutrophil and her platelet count had rebounded to heathy, normal kid levels. This fever was “just a cold.” We stopped the antibiotics and headed home as the sun rose.

And Now It’s Friday

Two days after that second ER visit, our girl has rebounded and is back to being her happy self, albeit with a bit of shell shock. We took a family trip to the California Academy of Sciences yesterday, where she giggled and ooohed and beamed when she saw the scuba divers in the aquarium. We had lunch by the fountains in the music pavilion. She spent her first night in her “big girl bed” by her own choice. Today she started preschool, two days after the official start of school but who cares.

As her mom, walking the line between coddling her too much and pushing her too hard too fast after an experience like this has been tricky. But if I’ve learned anything from this, it’s been a reminder of what Michael and I have already known: The kid is resilient as fuck, and she keeps rising to the challenges we set before her with grace and a surprising amount of cheer.

And thank goodness… because she’s going to be a big sister soon!

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