I am participating in Young Adult Tales over at Mommy's Piggy Tales. The story I'm about to recount took place when I was 31 years old, so maybe I wasn't technically a "young adult" anymore, but I count it as when I became a grown-up, although most days I still feel like a big kid. This is also a story that needs telling as background here on my blog of how we began our journey with Eosinophilic Esophagitis. Enjoy! December 24, 2005. L had just turned 6 months old and he started vomiting. We called to get an appointment with his pediatrician but she was booked and told us to go to Urgent Care. We went to an urgent care that was located down the hall from the ped's office, so while we were waiting at UC, Hubby walked down the hall to try to get us in to see the ped. He succeeded--we saw our doctor who diagnosed a stomach bug, said to keep going with the pedialyte etc. He seemed to perk up that afternoon--he sat contentedly in the bouncy while we decorated a Christmas tree.
Christmas morning he vomited some more and then improved again. A few days later we went back to the ped for his 6 month well visit. He had thrown up that morning, but she said he seemed fine, probably his stomach was still sensitive from the recent virus.
He vomited off and on the next few days and we'd call the nurse line and were always told "unless it's green or projectile, don't worry." Meanwhile, my mother- and sister-in-law came to visit for New Years.
December 30. We were hanging out with the family that evening, and L got hysterical. By then we recognized the pattern --he screams, screams, screams, then vomits. This time, I spread out some towels on the floor, and sure enough he puked--and it was green and projected a good 3 feet so we headed to the Emergency Room. {I took the towel with the green puke with us to the hospital, determined to be taken seriously.} We chose to go to Scottsdale Healthcare Shea because we trusted that hospital (we had recently moved further west in the Valley so there were closer hospitals, but we headed to Shea).
We went to triage and the nurse asked if he's always this pale. We said "yes, this is his normal skin color." People were always complimenting L's porcelain skin.
The rest is kind of a blur--I guess pretty much from that first moment, they suspected L was anemic. We went back to a room and they tried to draw blood. They couldn't. They tried and tried and L was crying and crying, but no one could find a vein. I remember nervously laughing and saying, "he must have blood cuz he's alive." Eventually, they called down someone from pediatrics to find a vein, even she struggled. At some point, someone found a vein in his head. That was a shocking sight!
At one point, a doctor came in, before the bloodwork was even back, and said he suspected he was anemic and would have to go to Phoenix Children's Hospital (PCH). We were shocked! Was it really that bad? We're just here for vomiting. He was very kind and said that for pretty much anything pediatric, they send you to Children's.
At some point the bloodwork came back, I'm not sure if we were told numbers at that point; if we were, we didn't understand the gravity at that point. We were told he'd need transfusions, and then they'd have to figure out how he lost blood.
So they sent L to PCH in an ambulance. Another shocker. I was 31 years old and had never been in an ambulance, here my little 6-month baby was in one. They strapped him into his infant carseat and then onto a gurney. I traveled with L in the ambulance and Hubby followed behind in our van. He wasn't sure of the route so he wanted to follow the ambulance, but the paramedics warned him, they weren't going to slow down and wait if they got separated.
Now, I have a bad case of Irritable Bowel Syndrome. I do not like riding in a car (like a cab, bus, shuttle) where I can't stop if I need to poop, but I just had to suck it up and get on in that ambulance with my baby.
The paramedics we rode with were very nice. The guy in the back with us was encouraging that anemia is easy to fix, he'll have blood transfusions and be fine. The harder part would be figuring out the cause. {Yeah, he pretty much hit the nail on the head on that one!}
We arrived at PCH and were admitted to the Pediatric Intesive Care Unit (PICU). By this time it was about 3am, I think. Oh and L was starving--they hadn't let me feed him {I was breastfeeding} because they were planning to do an abdominal xray or ultrasound or something. I remember a nurse coming in and giving us a little orientation and mentioning there was a lactation room if I needed to pump--and yes, I was quite engorged by then--so she set me up with that. I think they fixed his IV (found a vein in his ankle so he didn't need the one in his head) and we waited for doctors.
Dr. Watanabe, a hematologist, came in (was this still nighttime or the next day? I think we met a different doctor earlier?). He sat and talked with us, quizzed us on anything and everything from L's first 6 months of life. Eventually, we learned the numbers--L had a hemoglobin of 3 and iron of zero. Normal hemoglobin is 13. 9 gets you a transfusion. By 6, you're (usually) too sick to get off the couch. L was at 3! He was critically ill.
They began the blood transfusions. Creepy! When morning broke, I called my parents and told them a short version of what happened. That was the last time I talked to them during the ordeal. The reason I call this post "When I became a grown-up" is because I was unbelievably strong. I'm usually quick to cry but I kept it together the whole time. After I talked to my parents that one time, I made hubby talk to them and anyone else going forward--because I recognized that I was unusually together and knew that if I talked to anyone, I would break down. And I couldn't afford to do that. I was keeping it together for my son.
We stayed up all night and eventually went home for a few hours that day. When we returned I noticed how red L's lips were and thought, "poor kid, now his lips are chapped." Nope. We learned that being pale has nothing to do with skin color (L will always be fair-skinned) but has to do with lips and cheeks (cheeks should be rosy, lips should be red). It was early in December that I'd thought what a pretty pink color of lips L has. (From looking at photos, we can see that L started getting more and more pale beginning in October. And he'd seen his ped in October and both those times in December. Yeah, she wasn't our pediatrician after that.)
After 2 nights in the PICU, L graduated to the "Hem/Onc" floor {Hematology (blood) and Oncology (cancer) shared a floor--so we saw little baby cancer patients, so sad}. There, he had a roommate. Anyway, I don't have to tell all of our hospital stories.... The point is, my baby was in the hospital and I had to grow up fast. Listen to the doctors, take care of a sick kid (he was still sick when we took him home, he continued to vomit until we figured out he had EE 2 months later), give him iron and a laxative, take him to lots of doctor appointments (first with Watanabe and then to his gastroenterologist). The night he was on the Hem/Onc floor, we left him overnight (I think we left him the 2nd night in the PICU too)--so hard to leave him and he wasn't sleeping through the night yet.
And of course we had guests at home and it was New Years Eve and it just was all around chaos. We just let my in-laws fend for themselves (my sister in law was enjoying bubble baths in our huge tub while we shuttled bak and forth to PCH) and went to bed early on New Year's Eve. I remember they pestered us to open the Christmas gifts they'd brought from all the family members--that was the last thing we wanted to spend time on, but they were relentless. Just a really bad time.
So there you have it, the night I became a grown-up. A short synopsis of what happened next: Watanabe pretty much guessed it was a gastro problem, after ruling out a bunch of stuff, and eventually the GI did upper and lower endoscopies that found the Eosinophilic Esophagitis. I was ordered to wean him cold turkey and he stopped all food and we put him on the Neocate (elemental formula) and Prevacid. And he started to thrive.
Our best guess as to what happened (how did he get a hemglobin of 3?) is this: his body was reacting to the food he was eating (i.e. my breastmilk) by attacking his esophagus, causing erosion and bleeding. The bleeding was microscopic in quantity (I never saw blood in his diaper) but over time, he became more and more anemic. Another piece of the puzzle may be that at 3 months old, babies' bodies switch from fetal hemoglobin to making their own--so you have a natural dip in hemoglobin, so losing blood after that could make for a really low score. Meanwhile, he lost blood so slowly, his body compensated fairly well so, while we don't doubt he must've been in much pain that we didn't know about, it wasn't as bad as you'd expect for such a low score, plus we don't believe there was any brain damage from lack of oxygen in his blood. {That's the most sense I can make of it all, as a non-doctor.}
For more on our adventures with EE, you can click on the "ee" or "about" tabs in my sidebar. For more Young Adult Tales, go here. Thanks for reading!
1 comment:
You certainly did have to grow up fast! That must have been such a scary time in your life. You must have felt so helpless! Thank you for sharing that time of your young life with us. (I consider 31 young!)
L must be just a little younger than my oldest daughter -- she just turned six.
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