Tuesday, August 22, 2017

Post-Op Day 14

Harlie's night nurse said she didn't have a great night. Apparently she didn't really get any sleep. She was up till 4am and then finally got a little then. Poor girl. I can only imagine what she's thinking and feeling.

When I got in this morning Dr. Haas had just finished packing her belly and was able to put five sticks in her mouth again. It's hard to tell how long they will have to pack her belly. Hopefully, he will be able to put a little less packing material in there each day. But, today he had to use the same amount as yesterday. It drained a lot yesterday and the top dressing had to be changed twice (once during day shift and once during the night shift). We'll just have to see how it goes.

We were able to put her in the chair again this morning. So, we tried to wash her hair. They have this shower cap thing that you heat in the microwave, put on their head and scrub away. It didn't work that great. But I hope she felt a little better.

They started to try sprinting her settings on the vent. So, when she's on a rate, it basically does all the work. But, when it is on pressure support, she takes her breath, and it helps her (I think that's how it works). So, today they put her on pressure support for 2.5 hours. I think she did ok.

Her trach secretions were bloody again today (they were a few days ago). And when I suctioned out her mouth, that was bloody, too. Hoepfully that's nothing. She is pooling in her mouth because her trach tube is cuffed and she's probably having a hard time swallowing. We are not used to a cuffed trach and this is the longest she's ever had one, so I don't really know.

She is sleeping now and looks pretty comfortable. She's back on a rate so hopefully she's getting some good rest.

The infectious disease docs came by last night and this morning. Sounds like they will want to treat her with IV antibiotics for 10-14 days (for her belly infection), and I think that started 3 days ago. That might be hard on her IVs. But they are reluctant to put in a PICC line because they don't want another infection source. I guess her IVs are going to have to guide us there.

In order for her to go home (which is not even being mentioned) three things (as of right now) have to happen (in my opinion):

1. She has to come off that vent and get to trach collar. With only being able to sprint to pressure support today for 2.5 hours, that feels really far away.

2. Her belly needs to be healed enough that it doesn't have to be packed anymore.

3. She has to be off all IV antibiotics and medications.

So, another week at least, based off IV antibiotics alone.  But more likely two weeks, in my opinion.

I had to get a new hospital badge today, since my two week one expired. He asked, "Is a month okay?" Gosh, I certainly hope so.

I am getting my hair cut on Thursday and I am pretty excited about that. It is way over due. Its a little ballsy for me to go to a complete stranger. But, desperate times call for desperate measures!

Tom is flying up Friday night and is going to stay till Monday.

It is 4pm and the occupational therapist just came by to work with Harlie. It was all I could do to not cry. Still struggling to be honest. It was so painful to watch her work so hard to put those buttons in.

I just can't believe that this is where we are. I keep telling myself that it is only temporary. But it breaks my heart just the same.  It is just so painful to watch her struggle and work so hard for the smallest of movements. This girl was doing exercise videos and jumping in the pool less than a month ago. Sorry, I can't upload the video. It says it is too big. I'll have to work on it later.

Soon after I posted the video (that I can't share here) to Facebook, these were delivered...

They were freshly baked and still hot. My friend, Ann, sent them. She said that after watching that video she thought of this...

So, I ate a cookie (or two). Thanks, Ann!

It is 6:30pm now, and they are going to try another sprint to pressure support. Hopefully that will go well.

Tom and I video chatted for the first time today. We are so behind the times! I don't know why we haven't been doing this?! Harlie lit up when she saw Tom and Rooney! And when Cooper and Murphy got on there, she air punched them! So funny!!! Those little glimmers of Harlie make me so happy! She signed "I love you" to all of them, too.

It is 8:45pm and she finished her second sprint of the day. She did ok, but she was breathing faster while on pressure support. They put her back on rate for the night, so she can rest. I can't believe how long it is taking her lungs to heal.

Okay, that's all I have for today. Thank you, as always, for all the love and prayers!

Much love,
Christy xoxo


Anonymous said...

Sending good thoughts- cookies are better though.
:) Brittany

Jim Rosen said...

Thanks for the updates. We are thinking about you guys and hoping for continued improvements. The fact that she threw air punches and signed that she loved everyone really made me smile and cry at the same time.