I Was In The ICU Alone

Two years ago I got suddenly sick. I think it was dehydration. A lot of it could have been stress since Gavin was very FPIES sick. All that month when I had a drink it felt as if my throat was swelling shut. I was scared I had MCAS, another autoimmune disease. I was eating a very limited diet to keep my son thriving, he had food allergies through breast milk. He started reacting to the orange juice I was drinking, I think it was the citric acid. Every time I would have a glass of juice, he puked. Maybe I just had an FPIES reaction myself.

What I do know is that I wasn’t feeling well that week, I was groggy. Thursday night I went to bed early with a migraine and I woke up Friday morning and vomited. I told Greg to bring me to the hospital. I felt as if I was going to pass out. We got my in laws to watch Ellie but I brought Gavin to the hospital with me since he was nursing. While I was checking in I through up lamb I ate 16 hours before. They gave me IV saline while I was in the waiting room.

The emergency Dr. was good. He hooked me up with some IV Zofran for the nausea. I had chills so bad so I was under half a dozen heated blankets. Around 1 am they did a gas test and told me I was in keto acidosis. They didn’t know why I was so sick but they were moving me to the ICU. I was told my potassium was lower than they had seen before and they didn’t understand how I was still awake. I was told I was dying and my milk was toxic. When I was being moved to the ICU, Greg was told to go to the waiting room with the baby. He was informed he had to put the baby on formula. Luckily his paediatrician was on call at that hospital and we got a hold of him at 2 am. He approved the formula. I didn’t get to say goodbye, but they eventually went home.

Greg came with the kids to visit me for a short time on the Saturday and Mother’s Day Sunday. My friend Ami and my mom also visited. It was hard with the kids there, Gavin and Ellie wanted to breast feed. I was told by the Dr. that I neglected my health to nurse and if we didn’t do formula she would call CAS. The whole thing was traumatizing. I spent Sunday morning asking to go home and fighting with that Dr. The rest of the day I spent crying. I wanted my family. I wanted to go home.

I ended up being discharged Monday morning with better potassium. I felt sick to my stomach and I was having chest pains. Dairy was upsetting my stomach after not eating it for so long. A week later I was back to breastfeeding Gavin since he ended up being allergic to the formula. He lost 1.5 lbs that week. He ended up being admitted to a children’s hospital for failure to thrive and dehydration while I got my milk supply back. The whole thing was insanely stressful. We decided to keep Ellie weaned which ended up being a good choice since I had to stay with Gavin at the hospital for 3 weeks. She stayed home with dad.

Being alone was hard but the days went quickly. My night nurse cried for me on Sunday evening. We bonded a lot and she felt awful I was trapped in the hospital. She was from Russia and didn’t expect this type of thing in Canada. I get that I needed to stay though. I get that I needed my potassium up. I also get that seeing me just made the baby cry for milk. It was just a tough situation. I could have called my family and asked them to come but I was so distraught I didn’t think to reach out to anyone. I’m just glad it is over and we are all healthy now.

I may not ever know for sure what caused me to get sick and vomit. Dehydration, flu, FPIES, MCAS? I needed the MCAS test then when I was so reactive but I didn’t think to ask for it. Honestly, when I was in the ICU I just remember the one big fight with the doctor. I got sick suddenly and went straight to the hospital so I’m not sure I could have done anything differently. Things were so hard with my son’s food allergies. It was a mess.

My Life With FPIES

When I was a baby I was put onto formula because I was deemed too hungry for breastfeeding. My family is a bit desensitized to the hell I found my second child, Gavin. All the lethargy and puking was a normal part of my babyhood. I know a few things. I was an incubator baby with an underdeveloped stomach. I was probably vomity from birth. My mom had an emergency csection since the cord was wrapped around my neck. My mom breastfed for three weeks to three months, she’s unsure. I know I was lethargic. My mom had post partum depression and I spent my day sleeping in bed. I have been told I couldn’t be shaken awake and my mother would feed me bottles in my sleep. My baby teeth rotted from having a formula bottle in my crib at night. Apparently, I projectile vomited on everyone and so did my mother.

Some things I know I have been allergic to as an adult are dairy, soy, goat milk, nuts, basil, potatoes and kiwi. I have symptoms of MCAS when under extreme stress. I was allergy tested as a kid and I remember some type of tree and MSG was positive. I know it felt like MSG built up in my system and I would get randomly sick about every six months. Maybe we are just genetically unlucky. My father in law is allergic to shellfish and my father is allergic to morphine. I will say this, for a sick little baby my son has a great immune system. He is two. He is the toughest kid in the world. He doesn’t even blink when he gets needles and is still happy when his fever is 40 degrees Celsius. My daughter is a little different. Ellie is five. If she has the slightest fever she is knocked out. It is borderline, and we need to give her Tylenol.

I’m not sure what I was like tolerance wise, but I do know I went to school FPIES sick a lot. At some point I stopped puking. Most of the time experiencing crippling nausea. I found ways to cope, including over eating. I had systems. I would have Cheerios for breakfast, be fine, then passed out on my desk at school. I’m sure my father got in trouble for a late bedtime. He coped by letting me sleep in and the school hated our lateness. It was elementary school though. I knew I would be sick at school, so I didn’t want to go. My dad would always ask, “Where’s the puke?”. Once I did puke in front of my stepmother Mandy and I had to clean it up. She didn’t think it was right that I could stay home and play video games. I suppose sleeping on my desk wasn’t the worst option.

I think I got MCAS because my FPIES was ignored. I think the body smoke signals. I had no idea it was the cow’s milk. The weekends I spent with my mother and I would always get sick from the pasta sauce. Turns out it was basil. My great grandmother on my mother’s side would make gnocchi with ricotta cheese. Delicious but that would make me so sick. Secretly puking at parties was a thing I did often. I felt better after I was sick, and I wanted to play with my cousins. My father thought I complained too much and wanted people to feel sorry for me. He thought it made me unlikable. Lack of puke, boy who cried wolf syndrome. The reality was I was way more nauseated then he could understand, and lethargic. I was a chubby kid and I was tired. I wanted to lay down, colour, play video games. Sometimes we would go out and I would suddenly feel exhausted. My self esteem plummeted because I was deemed the fat lazy kid. I did my best to keep up appearances, but it was hard. I still feel like that.

Highschool was easier. I was gifted, IQ 136, so I could manage to do the work when I felt like it and lounge around the rest of the time. I wasn’t the best at going to class especially grade 11 and 12. I was convinced I had bulimia. I overate and ate every two hours to keep from puking. Sometimes I’d miss my snack time or try to eat salad for lunch. There were consequences. If I puked I might get a migraine, it might last days. I tried endlessly to work with family doctors to get a diagnosed. Countless blood tests, ultrasounds, a colonoscopy, and an endoscopy later, I was diagnosed with anxiety. I knew this was wrong but it felt hopeless. I feared pushing the issue. I feared being labelled a hypochondriac. I wanted it validated. I had anxiety because I was sick. I felt hopeless and alone.

I developed a deep depression. My immune system wasn’t the best. I got bronchitis three or four times. I was FPIES allergic to an antibiotic. I kept getting sinus infections. I felt stuffy all year round. My family doctor put me on antidepressants. Some of them helped. Life seemed harder than it should, I wondered if everyone felt this way.