Back in March we were geared up and ready for all of Otto’s appointments. We had a sedation appointment scheduled for his kidney ultrasound, ekg and echocardiogram with followups with both doctors that afternoon. Then Covid 19 started trickling into our community and everything shut down with the snap of a finger and it was cancelled. While I’m grateful that Otto is healthy enough for us all (doctor’s included) to be able to skip his appointments temporarily, I was very much looking forward to having that weight of “could there be something wrong I’m missing” off my chest.
However the plus side is now we will have a chance to talk about otto’s health face to face with his care teams in the time of Covid 19. Because of his heart condition we were just always told his was high risk. There is no data to confirm either way if this virus affects children with CHD differently than non CHD children but either way we were told to play it safe. Now with restrictions lifting and places opening back up we are confused on where we stand.
Being someone who is considered high risk or caring for someone who is high risk during a pandemic is really hard. It is hurtful and hard not to take it personally when people say the vulnerable should just stay home, like it’s easy. Without getting too political here, vulnerable people are people too with rights to enjoy life like everybody else. We should all take measures to keep everyone safe and do our part so that we all can live to some extent a “normal” life within reason.
It is really hard to watch the world gear back up and be sitting on the sidelines not knowing what is safe for us. I’m not going to lie, I’m jealous. I’m jealous and I’m working hard to not be and to celebrate the abilities we have to keep Otto safe at home for now. Sorry, I know I am getting a bit off topic here but I hope to gain two things from todays appointments (well, throughout this week at least, our cardiology follow up is next week) I hope to see that Otto’s heart and kidney function is still awesome and that we can have another 6 months appointment free and that we can get a better sense of where we stand with covid 19 and Otto’s CHD.
Today is not going to be easy. We had our “pre op” check in on Monday (because he is being sedated) and the second we pulled into the driveway of the doctor office Otto started begging and crying to PLEASE TAKE ME HOME TO MY HOUSE. It was horrible. The staff was fast and efficient and we were out of there in no time but it was a dark precursor to how today might go.
Later he was playing with his Mickey Mouse figurines and I was listening in. He had Minnie and Daisy together and this is what went down.
Daisy, why are you crying?
I went to the doctor Minnie and he hit my knees. (Checked reflexes)
Oh no do you want me to kiss it?
It was hard not to laugh that was his takeaway from the visit.
We are going to do all of his procedures under sedation today which scares me but the last year has been rough appointments and the doctors not being able to see anything on his scans because he is so worked up and scared. Note: none of this physically hurts him it’s all ultrasounds and jelly but it’s scary.
I try to be as honest with Otto as possible letting him know that no, we are not heading to honey’s house we are going to visit our doctor friend. He is not going to prick you today but he is going to listen to your heart and check in your ears. He still panics but I’m trying to build some level of trust that what I say can be relied upon. I also remind him that it’ ok to be scared but everything is going to be ok and we are going to be there with him. Sometimes it works, sometimes it backfires horribly.
So long story short, we have a busy morning of sedation, ultrasounds, echos, ekg and then a followup with nephrology (kidney doc) and then later this week cardiology. It’s going to be scary going into a building with humans in it other than my house for the first time since March, let alone the hospital but we have faith that everything is going to be ok.
Prayers always welcome.
– Sedation goes great
– Heart and kidney function are normal
– Otto stays relatively calm
– We can get in and out safely without touching everything