(I totally forgot to update on our current situation and doc appointments in the midst of home/school chaos. Oops!)
I am now 4.5 months old, and doing good overall. Last month was rough. Mama noticed I started getting many symptoms in the 3 weeks following my diagnosis appointment (March 29th). I would get cyanosis episodes, have a cough, not feed well with sweats, etc. So she messaged the head nurse of cardiology at Children’s and she wrote it off as not related to my diagnosis and instead sent me off to see my pediatrician as early as possible to rule out anything else. So we called the clinic and demanded an appointment with our doctor, Dr. A. Turns out she only works Thursdays and Fridays, and next appointment available wasn’t until 2 wks later when I already had an appointment scheduled for my 4mo visit. Sooo, they sent us off to see another very good pediatrician there, on April 19th at 9am.
Dr. E saw us that morning, and mommy discussed all my symptoms with her. She was very concerned. Said everything she mentioned was either 1 of 3 things possible. 1) something with the lungs, 2) seizures, or 3) a much bigger CHD (Tetralogy of Fallot/TOF) that was misdiagnosed.. So she ordered us to go to Children’s ER that same day and get another EKG and echo redone, and an EEG for brain activity. She wanted answers and fast, because TOF requires surgery and soon.
Mama left the appointment with Dr E with tons of concern and questions about what was going on with me. She was kind of sad that I had to go through all this… We came back home, had lunch, a little nap and left for the hospital around 4:30pm.
After a long 7 hours of being hooked to a pulse ox monitor (showing oxygen levels decreasing to 92, while hanging around 96), and then a lung x-ray (I don’t know if you’ve ever seen this machine they use for babies but it is heartbreaking to see them in that position in pain/fear), and then blood tests to rule out infection, and finally a long EKG, they came back to our room around 12:45am and said that everything came back normal and they didn’t see the need for an EEG or echocardiogram, and to go see the pedi within the next 2wks or to come back if things got worse and they’d change their plan of attack. Mommy wasn’t happy at all. I was exhausted, poked and prodded for hours and they did not want to do the tests that had been ordered. Got back home around 1:30am, completely knocked out and managed to have somewhat of a night’s sleep.
The next morning, she called the clinic again and left a message for Dr. E… 2 days later, Dr. A called back and asked what had happened. Said we’d talk about things on the 29th when we’d see her again.
April 29th came along and baby boy was still getting symptoms that were worrisome. And at his weight check, it was said that I was way too small for my age and not gaining enough. I weighed about 11lbs 9oz, which put me at the 0% line for weight-for-age chart. I hadn’t gained weight in 3wks either as mama had done weight checks at home with a baby scale. So they decided to put me on formula supplements and because I react to dairy and soy, I had to have a special prescription for Neocate for a month and come back a week later for another weight check. She did not have time however to discuss my visit at the ER… so I guess she would at the next week’s visit.
(I managed to get him a can of Neocate that same day, not realizing that if I had no access to the govnt’s health care, I would be spending 52$ a can!)
So on Friday, mommy and I went back to see Dr. A, and had a weight check. I am now up to 12lbs 4oz, back on the charts at 1%. Yay! Oh and I’m also 24.75in tall, about 20% for height. As we were about to leave, Dr.A said “Oh, I also want to tell you something before you leave”… So mommy sat me on her lap and Dr.A told us that she had a talk with Dr.E and knows about what happened at the ER, and she is very unhappy with the way they treated us. So now the plan is to send us to a private clinic and see Dr.Charles R., a pediatric cardiologist and hope that he can give us answers… Dr.A said it would be covered by the RAMQ, but mommy looked it up online and it seems only the appointment would be. If we need another EKG and Echo, those must be paid for. Don’t know what we will do now…
TO BE CONTINUED! (when we see Dr.R)