Sunday, August 13, 2017

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





4 comments:

Jennifer said...

We are still holding you all up in prayer! You are all a fantastic family that keeps living a beautiful life, while going through all of the struggles with GRACE and HUMOR. You have been such an inspiration to so many, and Harlie is such a trooper too! She must get her "go get 'em" attitude from both you and Tom. You guys have paved the way for us, and now, let us hold you all up. Now is the time to slow your pace, take a break, get a massage, and sleep. See a doctor if you have to (ask the doctors or nurses for a recommendation...an Ambien won't hurt). Not that I'm a drug pusher, I just have a hard time myself when Madeline is in the hospital; I HAVE TO be TOLD to go to SLEEP. Not only did Harlie inspire me when I was going through my Cancer treatment, BUT, you and Tom have inspired me also with your love and endurance during these hard times. Although we ended up getting a divorce, we are back together, and getting counseling. ��You two, take good care of each other, and it's nice to see. We don't just ❤️Harlie (and friends), but your whole family, and the families of Harlie's "friends". Because WE have been loved and held up during our critical times, let us do that for all of you, too! ❤️��❤️, Jennifer...Mom to Madeline (and Isabella and new girlfriend to my X husband, LOL!).

carla said...

Thinking of y'all constantly {{{❤}}}

Jordan Hendler Dorn said...

You are in our family prayers, we will lift you all up and ask for healing, peace and love ❤️. We don't know each other at all but as a mom we share the same love of our children that the Lord has for us. Thank you for sharing

Rick said...

Just wanted to let you know that my thoughts and prayers are with you constantly. I am so inspired by your blog and by your love for your precious girl. Hugs and love to you all, Kathy Streetman (kg. REES)