12 Hour Day

We are just leaving the hospital in Iowa City. We left home this morning at 6 am, and we should get back around 6 pm. Long day. 

Kiran’s heart is stable!  There isn’t much change from four months ago.  Dr R feels we are fine scheduling his cath in October. Since we will see him at that time, we didn’t make another clinic appt with him until JANUARY!  

In fact, other than the cath in October, we don’t go back for any other appointments until January!  

Also – we are coming home on No Meds!  I am beyond ecstatic about this, especially that he is doing fine without eye drops. 

Every other appointment was simple and went well. If we are going to have a long appointment day, we will certainly take one with this much good news any day!

One event today caused my heart to swell with pride and break with heartache, all at once. When the technician was setting Kiran up for his EKG, one of the little metal clips actually got placed pinching his skin (trust me – this would hurt pretty badly). I happened to be watching Kiran’s face, and he kinda flinched a little – enough that I noticed something was wrong and started investigating – but went back to his stoic, calm face very quickly. 

I noticed it and the problem got corrected right away, but still. He didn’t scream or cry or fuss. In fact, he had a very brief pained facial reaction and then just….handled it. And I am talking about a small metal clip pinching skin on your chest. OUCH!

I realized in that moment two things: The strength my son possesses is great. This isn’t new news, but wow. What a tough dude. And: Man, he’s been through some painful experiences in his short life, to react so minorly to that kind of pain. 

See what I mean?  I am so proud of him for being so strong and so brave, but I hate that he has to be. Hate it.


All the Specialists

I am riding in the backseat with Kiran right now, an early morning drive to Iowa City. We see every specialist he sees, save ortho, today. It has been four months since we have seen most of them. 

Kiran has been off ALL meds, including eye drops, for just over six weeks.  I feel like I am bracing myself for that to change, though every part of me hopes it doesn’t have to. 

My anxiety is great this morning. I know we have decisions to make – his one year post-op cath to schedule, for instance – that I don’t want to have to make. 

I am so thankful – and so enjoying – how our life has slowed down. I love that medical appointments, ER visits, hospital stays…are no longer a normal part of Kiran’s life. I was just processing this yesterday: We have not had an ER visit or hospital stay since Kiran’s open heart surgery. Not one. In ten months. His first ten months of life were very different. 

Prayers and good vibes and positive thoughts and virtual hugs all appreciated today. It’s going to be a long day for all of us. I hope to update with good news on the drive home.