To a parent, there is nothing worse than having a sick child. The normal colds and childhood diseases are stressful enough, but a chronically ill child is more than many people can handle.
In hindsight, I can explain all the little incidences that cropped up during Cordelia’s childhood. But at the time, I depended on modern medicine to tell me what was wrong, and modern medicine failed. Let’s see if you can figure it out before you get to the end of our story:
I think Cordelia was about 4 when the first notable incident occurred. Hubby and I were both working that day, and Cordelia was cared for by her grandparents. When I arrived that evening, Grandma greeted me by saying, “Let me tell you what we did.” I assumed she was going to tell me they went to the movies, or shopping, or some such – imagine how shocked I was when told that Grandpa had realized his heart medication was running low and needed a refill, so he emptied the bottle into an ordinary drinking glass, which he then put into the kitchen cupboard. Cordelia asked Grandma for some milk. Grandma grabbed the first available glass. Yes, you guessed it – Cordelia ingested Grandpa’s heart medication.
Fortunately, this happened not too long before my arrival, because no one had thought to call a doctor. I called Poison Control, which resulted in Grandpa driving around to several local pharmacies looking for ipecac – wouldn’t you think that would be kept in stock? The ipecac was administered, and the vomiting began. All normal thus far – except that Cordelia could not stop vomiting. We sat her in the tub with a bowl. I called Poison Control, who advised to just give it time. It took hours, but eventually the vomiting stopped.
I don’t know if that incident was the cause of all that followed, or whether it was merely an indication that there was an underlying condition that should have been attended to.
When Cordelia was 8, she got the flu. She could not stop vomiting. Being a stupid young mother, I let it go on for days and finally realized she was sleeping a lot. I thought that was good – she wasn’t vomiting while sleeping, right? I was too inexperienced to know that excessive sleeping after a bout of sickness could mean severe dehydration. When she slept through the evening and into the next morning and then woke up vomiting AGAIN, I called the doctor. This resulted in Cordelia’s first hospitalization. She was put on IV fluids and kept overnight.
After that, every time she became ill, she would experience uncontrolled vomiting, and each time she had to be admitted to the hospital. A normal case of chicken pox resulted in her being quarantined in a hospital room for several days. I’ll never forget the poor father who saw me step out of the doorway marked “QUARANTINE” and grabbed his child away from me for fear she would contract some horrible incurable disease. I tried to explain it was just chickenpox but he didn’t believe me.
The hospitalizations became more frequent and lasted longer. She was getting sick every couple of weeks. I kept an overnight bag packed at all times. At one point, Cordelia got sick and I called the doctor, apologizing. I said I didn’t want him to think I was an overly protective mother who called every time her kid got a little bug. His response was, “In her case, I think you should call.”
It was so bad that when Cordelia started vomiting, her younger sister started crying – because she knew Mom would be going away with Cordelia for a couple of days.
And the absolute worst was the day I had Cordelia in the tub, washing her prior to taking her to the hospital. She looked like a starving child from Biafra, and her skin was so hot that when I touched her, I felt repelled – immediately followed by “This is my child, my baby – how could I feel that way? What kind of mother am I?”
As the course of Cordelia’s illness continued, I began to doubt my abilities as a mother. How could a child become ill so often? What was I doing wrong? It didn’t help that one of the pediatric nurses accused me of Munchhausen by Proxy Syndrome. I had to look it up, at which point I began to doubt my own sanity. Was it possible that I was somehow deliberately making my own child sick just to get attention from medical personnel? Could I be doing something so horrible without knowing it?
Tests were done – xrays, ultrasounds, MRIs and an EEG (I insisted on being in the room for the EEG – Cordelia slept through it, but the strobe lights nearly made me throw up). A psych consult was ordered (for Cordelia, not me, and it came out normal.)
Cordelia’s vomit began to show flecks of blood. The doctors said not to worry.
During her 11th hospitalization (Cordelia was 10), she suddenly started vomiting fresh blood. The floor resident had to lavage her – twice (pump water into her stomach and wait for it to come back up clear – I can’t imagine what that must have felt like).
The next morning, our regular pediatrician arrived for rounds, and I totally lost it. The poor man stood silently for at least 10 minutes while I ranted about the inadequacy of Cordelia’s care, ending with, “That blood has to be coming from somewhere!” The pediatrician put his head down, and then responded, “You’re right, and we’re going to get to the bottom of this.”
Finally, a GI consult was ordered. The GI doctor arrived with an attitude – he couldn’t believe he had been called in simply because a kid was throwing up. As he entered the room, Cordelia held up both hands, with the fingers flexed backwards. I sighed and said, “She swears she’s not doing that.” The GI doctor’s attitude did a 360 degree turn, as he replied, “She’s not, she’s throwing potassium.”
An endoscopy was performed, and afterwards, the GI doctor had me escorted right into the procedure room, where Cordelia was still lying unconscious on the table. The doctor was at a computer, and had pictures to show me. Cordelia had several ulcers in her esophagus, which in the doctor’s opinion were “very, very bad.” Aggressive treatment was to start immediately, consisting of Zantac, Reglan and Prilosec.
Later that evening, Cordelia began to hallucinate, and I called the nurse in. It turned out that the floor resident had miscalculated the dosage of one of Cordelia’s medications, and had prescribed 10 times the amount she was supposed to get! Fortunately, there was no apparent damage caused by the error.
Cordelia began to heal, and that GI doctor became my favorite person in the whole world.
Was the ordeal over? Not quite yet. There were a couple of subsequent hospitalizations, but essentially she continued to improve. The school nurse was a saint who managed to keep the medication schedule (each drug was to be given at a different time).
So, what was the final diagnosis? Have you guessed it?
Gastroesophageal reflux disease (GERD)
These days, we all know what it is, if only from all those TV ads for Zantac and Prilosec. Back then, I’m not sure that Prilosec was even recommended for pediatric use.
Why did I not see the signs? Too many of Cordelia’s vomiting episodes seemed to start after her favorite meal of spaghetti, juice and chocolate cake. Or, did it all start way back when she accidentally drank Grandpa’s heart medicine? We’ll never know for sure.
I’m just glad that the nightmare ended. God bless those parents with an ill child for whom the nightmare never ends. No one should have to go through that.
This was a guest post by Cordelia’s Mom. If you have not checked out her bog at Cordelia’s Mom, Still please do! She is one of the bloggers I have looked up to since I started blogging. I am honored she took the time to share this post over here.