Post-op Day 5

It's so hard to believe we are only in post op day 5. Wow. It's been a busy 5 days.

I had such a hard time sleeping last night. My stomach hurt so bad. And so many things were going through my mind. So hard to shut those thoughts down. I finally fell asleep and woke up early. I called her nurse to see how she was. I'm so happy we got the same nurse we had yesterday. It really makes such a huge positive difference to have nurses who repeat.

Anyway, she said Harlie had a really rough night last night.  But that she had settled down a bit.

Her really low blood pressures could indicate a big infection. So they changed her antibiotics again. Now she's on Vancomycin and Zosyn.

They are giving her some blood. They could not move her at all last night, because she was so precarious. So, she has developed a pressure sore.

And she lost a permanent tooth this morning. Ugh. Do you know how long a healthy, permanent tooth is? It looks way to long to fall out, trust me. And more are loose. Really, I just can't.

They are moving her to the cardiac ICU today. They are having to consult with them so often now that it just makes sense to be there.  She's less post op care and more cardiac care now. That should happen this afternoon.

When we went to Walgreens to print some photos out for Harlie's room, I picked up some cards and we played in her room. We spent more time in her room today, but we wanted to.

It's now 5pm, and she's now in the cardiac ICU. Maggie just left to go back to Richmond. I'm going to miss her. She was a really good distraction for me.

Maggie and Noah saying goodbye.

Harlie has a temperature probe that goes in her nose and sits in her esophagus. They could not get an accurate reading from anywhere. So, they are going to leave this in until she goes some time with no fevers.

I just saw her pressure sore and it made me flinch. Her nurse said that it doesn't blanche (?) which means it is deep. Ugh.

They are stopping the jaw stretching until we discuss things tomorrow. It just seems to really upset her balance overall. She's had difficult spells after each one. She just needs some rest. And those poor freaking teeth need to heal a bit.

Earlier today I asked her nurse to tell me something good. I'm usually pretty freaking good at finding a silver lining on my own. But this whole hospitalization has thrown us for a loop. We are in brand new territory all around.

Anyway, she said that she had twice the amount of secretions yesterday than she has today. And that she is on less oxygen. She was on a lot more yesterday. And I think her vent settings are a bit softer today vs. yesterday. So, overall, she felt that her respiratory status was improving a bit. So, that's good. We'll take it.

We have not told the boys about what's going on yet. They are having fun with Grandma, friends and family and we don't want to worry them yet. It will be easier to tell them if we can say she's better. And we aren't there yet.

Tom is going to stay here through Wednesday, at least. We both want to be by her side when she's able to wake up.

Forgot to mention that we went out on a bike ride this morning. They have these bike share things where you can get a bike from any station and return it to any station. We went through the park. It is amazing how I can feel almost normal for a second. Tom is really good at distracting me and making me laugh, even when I just want to cry. Plus, the sunshine, fresh air and exercise is so rejuvenating.

Lastly, we are truly overwhelmed with all the love and support we are getting. I just can't get over how many people care about her and us. Lynda posted on Facebook that We Heart Harlie & Friends has already raised a lot of money to help us pay for some of our expenses. Our community has already been so generous. The words "thank you" always seem so inadequate.

As much as we love Boston Children's Hospital, it is shocking that they don't have a better set up for families who are from out of town. The Ronald McDonald house is for cancer patients only. And the two houses they have here have been completely booked every time. I completed an application, and they put us on the waiting list. So, we'll see.

Anyway, for now we got the medical rate at our hotel and they threw in free breakfast, so that's cool.

Okay, it's getting late and we need to eat. Thank you, truly. We could not survive this life without you.

Much love,
Christy xo