I’m overwhelmed and emotional.

Imagine that.

Exhausted? She’s a permanent resident.

I sometimes gaslight myself and wonder why in the world I am always feeling these things. And then I realize:

It’s the vacation bible school “student success plan” I have to fill out, to ensure Kiran’s needs can be met and they will have a one-on-one volunteer to help him successfully experience what most parents can just roll up and push their kids out of their vehicle to experience.

It’s the assignment I thought I would be able to knock out this morning during the 3 hours of respite care … that I quickly realized was a four-parter, and I only got through one part successfully before I couldn’t push my brain any further.

It’s the waiting at the pharmacy for the pharmacist to verify the dosage of amoxicillin because it appears to be too high, but actually we just have to give one dose before visiting the dentist every six months. And then waiting for her to mix it, because it has to go through the g-tube. I seriously had to hold back tears standing at the pharmacy counter, waiting – and why? I don’t know – I don’t get to choose when the emotions crash into me.

It’s the constant mental effort I have to put into grad school classes, paired with the constant physical, mental, and emotional effort I put into caregiving. It’s all the extras that add up, that feel unfair, that make me sometimes want to shout and scream and stomp my feet.

ENOUGH! – sometimes, too much –

It’s the big, looming changes before me that I have to work toward and wrap my head around and navigate…and change for me is always an exhausting and terrifying presence.

It’s the bravery and vulnerability it takes just to move in this world as a human.

It has been a very long day, and I am exhausted and processing.

Kiran is such an awesome patient. I am always so proud of him and amazed at his peacefulness and bravery. I know this has been his life, and he knows nothing different, but he really is an amazing kid.

The news I will share – the biggest news of the day – is the boy’s heart. First, the good: It is not yet time for an intervention. Now, the bad: It likely will be within the next year.

The pressures we are watching through his valve have increased. Nine months ago, they were around 48, and today, they were 58. Mid-60s indicates time for intervention, so he seems to be quickly moving there. However, his right ventricle still appears normal size, so it’s not working too hard pumping the blood through. Thats the other piece of what we are watching.

Dr R wants to see him back in 6 months (9 months ago, he was good with a year; I felt more comfortable with a sooner check-in), so I know we are more closely monitoring heart function.

It is still most likely that the intervention needed will be ballooning (and potential stent placement) done in the cath lab. This should buy us more time before his next open heart surgery is necessary.

I am thankful we didn’t have to schedule a cath procedure today, but I was not expecting that large of a pressure increase.

The time is approaching, but it’s not now.

We haven’t made the trip to Iowa City since February. I think that’s why my anxiety is ramping up in anticipation for tomorrow’s big day of appointments. When it becomes routine and you’re just trucking along, going to appointments regularly, you think about it less.

Tomorrow feels big. I am hoping that is not a premonition, especially as it relates to Kiran’s heart. My hope is that we see continued stability there, with no need for an intervention anytime soon.

I have questions for his gastroenterologist which feel life-altering. I tend to have to hear about something a few times and gain a different perspective on it before I’m really willing to consider change. This revolves around his stooling, and I have decided I need to be more protective of his privacy in this area as he gets older, so I may not share as much openly here as I once did.

And genetics. I heard again from his genetic doctor today, and they want ME to also do the skin punch biopsy (Yay….). I read through the ten page consent form for the research study today, and I am ready to move forward with my consent for Kiran to participate (his dad still needs to weigh in but last I heard, it sounds like he is consenting as well). I also let her know that if we are, in fact, moving forward with Kiran, I will definitely participate as well. As I am typing this, I am just now realizing that means I, too, have to decide if I want any secondary information about genetic makeup that could cause disease in the future.

Why is it a harder decision when it’s me versus Kiran? I think I am a much worse patient than I am caregiver.

At any rate, I don’t anticipate much sleep tonight, and my alarm is going off at an atrocious hour. We have to be on the road by 5:30 am, and we likely won’t get home until 5:00 pm. I know the day in and of itself will be exhausting – they always are – but I have my documents in order and my lists of questions at the ready, meals are pulled, backpack packed. I am as prepared as I can be physically; I just wish I knew how to better prepare myself mentally and emotionally.

The unknown is never easy.

I will do my best to update the important news of the day on the car ride home – as per usual, my dad is acting as chauffeur – but consider holding us up tomorrow, in whatever way you choose. We accept all currencies of positivity sent our way.