Wednesday, August 23, 2017

Post-Op Day 15

Hi! All is the same here. Trudging along.

Her belly packing was changed this morning. And he put the sticks in her mouth again. Five went in easy, so that's good. Might try for six tomorrow. The Ketamine works well for all that.

Her nurse tried to get ENT to come and look at her trach site while the Ketamine was doing it's job, but they couldn't get here in time.

Her trach site looks absolutely awful, and getting worse each day. When they came to take a look Harlie was not cooperative.  So, her nurse gave her Versed and Fentanyl. But, when it comes to drugs, it is like she's the size of an elephant. They said she eats through them like they're nothing. So, when that didn't work, she had to give her more Ketamine.

Her site is so bad. The ENT got all the blood clots off the top and said that once she got to the wound, it looks like it's trying to heal. I'll have to take their word for it. They changed the dressing from Mepilex to Aquacel. Hopefully that will help. They also scoped her trach to make sure that her trachea wasnt bleeding. Which it isnt, so that's good.

They are increasing her sprints from BIPAP to CPAP to three hours, two times a day.

It is now 6pm, and it has been a busy day. After rounds (around 11am) I went to the gym and worked out. Then I went back to the hotel to shower and eat lunch.

When I got back she was sitting in the chair.

After a couple of hours, we got her back in bed. Physical Therapy wants to start getting her to stand so we can work towards getting her walking. So in the transfer from chair to bed, she stood (supported, of course)! And I asked her to smile and she did. She really is hilarious. The fleeting moments of smiles I've captured are pretty much the only times she has shown emotion. Most of the time her face is expressionless.

After we got her in bed, we changed her trach ties, dressing and gown. Have I mentioned how gross her trach site is? I wish I could share the photo so you can see what I mean. I'm just afraid that most of you wouldn't read my blog anymore for fear of more photos like that. Anyway, it turned my stomach, but I had to clean it and get her more comfortable. I tried to hide how much it grossed me out because she is right there, watching me! How awful for her! I guess it's just going to take some time for this horribleness to heal. But I gotta tell you, it feels like a real kick in the ass. As if having the trach again isn't bad enough!!!

Oh, forgot to mention that I saw those turkeys again on my walk back to the hospital this afternoon. So amusing!

The social worker comes to check on me every few days. She came today and sat down to chat. She told me that I don't have to be so positive all the time and that its okay for me to admit how much this sucks.  

So, this sucks. Really, really bad. I can't possibly describe how painful it is for me to watch all she's going through.  It is so hard to be her caregiver and rise above my own discomforts and pain to do what her body needs me to do. I don't want any of this for her, for me, or for our family. It sucks all around in every possible way.  As the issues and challenges mount up, I just want to scream, "UNCLE! WE ARE DONE! HAVEN'T YOU ASKED ENOUGH OUT OF HER AND US?!" We have risen to the occasion so many times and have remained so very grateful. But the challenges still come, and more is asked of us. 

So, we can't be done. We have to keep going and I have to find the energy to be strong enough for her and me. And when this nightmare admission is over, we will go home and have to deal with the aftermath of living through a traumatic experience. And we will have to learn how to live our life with a trach again. And PTSD. 

So, now you know. 

She asked me what coping techniques I use while in the hospital. So, I thought I'd write them down just in case I forget them in the future and need to refer back to this list.

1. I focus on the positive as much as possible. I deal with the negative, but I try to keep it contained. 
2. I walk to and from the hospital and the hotel. Being outside is good for me. I told her she would have to pick me up off the floor if it was winter right now. 
3. I exercise when I can. Even if I don't feel like I have the energy, I go and the energy just magically appears. 
4. I try to have a routine to my day. Exercising helps make this happen.
5. I get a few bottles of wine and beer from Trader Joe's and keep them in the hotel room fridge. This is vital and probably should've been #1 on this list. ☺
6. I laugh as much as possible. And one thing that really helps me is watching The Big Bang Theory. I took this picture last night to remind me how funny it was. Weird that I did that and now I'm writing this list!! 

In this particular episode, Howard had been applying some kind of cream on his mom that was high in estrogen. Not using gloves, it was absorbed into his skin making him act like a woman. It was hilarious! So, he told his friend Raj that his nipples were sensitive and he asked him if he thought his breasts were getting bigger. Seriously, so funny!!

So, that's it. 

It is now 8pm and she completed both three hour sprints on CPAP successfully. So, that's progress. Her pressure sore has started to open. It was unstageable while closed (meaning they couldn't see what stage it was since it was closed). So, we'll see what it looks like tomorrow. 

She has signed "I love you" many times to me today. I think she's so amazing and I feel so lucky she is mine to love. 

I'm going to head out and get some dinner and go back to the hotel. Thank you, as always, for your unwavering support. For all of you that have been so generous with your donations, I want you to know that I am so grateful to be able to go back to my hotel room where I am comfortable and can get some rest so I can come back here tomorrow and fight another day.

Much love,
Christy xoxo

1 comment:

Bea said...

Oh Christy, sadly you describe so well how hard these times are when our children are unwell :( You are doing so, so well and please know that we are praying and wishing that things improve as soon as possible for you and Harlie. Lots of love xxx