Post-Op Day 40. And Easter.

On Friday she was transferred out of the CICU to the Heart and Kidney Unit (HKU). While this is a GOOD thing, it can be a difficult transition - for me. I mean, they saved her life, so I can't help but become attached. I spent 37 days there, in a row, so I got to know lots of nurses and doctors and everything just became familiar. It was oddly comfortable, despite the fact that the CICU environment is intense and no place you want to live. Plus, motor memory... I've taken the path more than once to the CICU when I meant to go to the HKU, which is in a different wing.

Harlie's room in the CICU...

My view each day...

All moved out and ready for the next phase...

Just some of the nurses who came to see us off..

Nancy

Erin

Erin (she was with us when Harlie coded)

Me, Erin, Liza and Maria

So, now that we are settled in the HKU, I realize how much quieter it is here. It is pretty amazing how I didn't even know it was noisy there.

Harlie's hair.

Before is in the CICU. After is in the HKU, after several hours of brushing for as long as she would tolerate, giving her a break, and brushing again.

I don't care what she says, it was worth it.

On Saturday, Mary Ann brought the boys up for the weekend. It was so wonderful to have them here.

Sally and her daughter Annabelle, were in town and they stopped by for a visit. We ended up going to lunch with them and that was fun. Forgot to get a photo.

The HKU nurses hid some eggs around the unit, and gave a bucket to Tom and Murphy to hide in the healing garden.

While out there Lauren, Harlie's nurse on the day she coded, came to visit. I know some of you were afraid I would be lonely if we didn't have any visitors. But we have had such wonderful nurses and they have been so good to me. I haven't felt lonely at all.

Lauren

On Sunday, the Easter bunny ran into Mary Ann at church and gave her baskets for the kids. Crazy, right?

After we had lunch, Mary Ann sat with Harlie while Tom and I hung out with the boys. I've missed their crazy antics.

The weather was beautiful and we had a wonderful time together. It was so great. 

Before he left, Tom gave Harlie a pep talk about working hard at rehab.

She acts like she doesn't like them, but we all know that's not true. She was so happy to have them here.

They left Monday morning. Mary Ann took them to Pittsburgh for Spring Break.

Mandy came and did some PT.

And look who surprised us with a visit today - Dr. Derco, Harlie's pediatrician for almost 11 years! He retired in July, 2017. What a wonderful surprise!

He was also the pediatrician for Dr. Donofrio's kids when she lived in Richmond, years ago. Dr. Donofrio is one of Harlie's cardiologists. (She diagnosed Harlie when I was pregnant with her.) So, I took Dr. Derco to the cardiology clinic to see if she was working. Fun visits!

We were supposed to go to rehab today, but we hit an insurance snag. So, we hope for tomorrow. My guess is that if we get approval, we won't be able to go on the same day. They have to schedule the transportation ahead of time, and I'm betting that won't be able to be a last minute thing. So, if we get approval Tuesday, then we'll go on Wednesday. But, I've been surprised before, so who knows?

Yes, it is so frustrating. The sooner she gets to rehab, the sooner she gets stronger, the sooner we can go home. It will be six weeks on Wednesday! We are ready to be home again.

I took this picture as I was putting her to bed tonight. She is looking more and more like herself every day.

She has cried a few times, thinking about Rooney and Mabel. We miss them so much. Mabel won't even remember us! We only got 11 days with her before we left.

And she has cried, asking when she can go home. But, despite that, she still manages to be happy. And then she makes me happy.

So, that's it for this update. Hopefully this insurance gets worked out sooner than later, so we can be working our way home again soon!

Thank you for all the love, prayers and never-ending support.

Much love,
Christy xo