Hannah’s Medical Updates

Hannah had a hefty day Tuesday April 25th. It started as her rescheduled annual echo/EKG and added on her PE tubes - not due to constant infections, but due to held fluid that was affecting her ears.

Originally we were scheduled for an 11am echo, 12pm EKG and 12:10 Cardiology follow-up. 

We were given instructions to arrive at 7:15am - ! I didn’t understand why so early, but who am I to question the medical schedule? 


The morning went well and I was really more anxious about her lack of food & water before the procedures than the procedures themselves. 

Hannah was pretty good - she was so distracted with where we were, I don’t think she cared about thirst or hunger. [Nothing after 4:15am - right.] Literally every nurse exclaimed how cute Hannah was - I think the glasses have a lot to do with it, but I mean come on - she is adorable : )

Loves putting on socks!

Passing the time!

Around 8:45 we took her to the side room of the OR with the anesthesia team. We all sang Old MacDonald Had A Farm while I held her down... she was out under 30 seconds - it was crazy. And rattling seeing her go floppy so fast.

We grabbed our items and shuffled out to the waiting room. The same waiting room we were in almost two years ago for her heart procedure. I was surprised at the emotions that bubbled up being in that waiting room... sheesh. 

Tim and I grabbed a quick breakfast and headed back up - we weren’t even gone 45 minutes when we were told she was done. Dr. Shott said it went just fine and the fluid in Hannah’s ears was the consistency of rubber cement! I’ve been told by two other Moms that she described their sons’ ear fluid the same : )

Seeing Hannah afterwards was difficult. First, a nurse was holding her and once we arrived, I took her and my poor girl was inconsolable. Probably confused, scared, foggy and a painful IV in her hand. We sat for 20 minutes until she calmed down. 

We went to the cafeteria and the poor thing was exhausted - she slept a good hour in her stroller which was fine - Tim and I could grab some food before our 12:10 Cardiology follow up. 

Poor little ragamuffin with her skinned knees.

By the time we got to Cardiology, you’d have no idea she’d been sedated for a minor procedure just hours before:

We had a nurse and the Cardiology fellow stop in to see us and didn’t see our Dr. for an hour and a half past our appointment time. Apologies just aren’t worth it. 

What I thought would be a routine “everything looks great” - was not. Nothing serious at the moment. Hannah’s left heart valve is leaking/regurgitating more than it was a year ago. So right now she’s going back on a pill 2X a day to control that regurgitation. We’ll follow up in one year.

Will the leaking get better or worse? Her doctor can’t predict - it’s very subjective. Could get better, worse, or stay the same. If - heavens forbid - it continued to worsen, surgeons would have to go back in and repair again. 

Not at all what I was expecting to hear. I guess I blindly thought - and was told - Hannah’s type of repair was typically a one-and-done repair. Just the thought of even a slight chance of going through that procedure again makes my body start to shake. I have been through that battle and I am not sure I could muster myself to power through it again. I had put all those feelings aside and now they are creeping back.

I know many kids who have - or will - go through multiple procedures but I can’t swallow the possibility when I thought we weren’t supposed to go back. 

I know this may not even happen... I plead and am desperate for the pendulum to swing back. So please, please - if you believe in a higher power or any cosmic persuasions, I beg you to put Hannah’s health in your prayers, chants, dances, what have you.