Saturday, July 6, 2013

Post-Op Day 3

She is definitely more swollen today.  But they say the third day is the worst.

And she's still holding on to a lot of fluid.  After two IV doses of Lasix, we haven't really made any true progress.

At 8am cardiology rounded.  Loved this doc and how kind and thorough he is.  When they put the IV in yesterday they got some blood for labs.  Her white blood count (WBC) is high, so they are going to start a broad spectrum antibiotic.  They also got some of her secretions last night to culture.

Her lungs sound coarse and crackly.  So it sounds like she's worse today than yesterday.  When she cries, she makes NO sound at all.  Which means she is swollen around her trach tube (usually there is a leak around, which allows her to make sound).

In order to get her home, she has to be fluid balanced - or at least heading that way - on oral (well, through her g-tube) Lasix versus IV Lasix.  He said if the IV Lasix works, and they send us home to find that the oral kind doesn't work, then we'll be in trouble.  So, she needs to get rid of lots of fluid, get switched to oral Lasix, keep the fluid off for a while, before we can be discharged.

Unfortunately, her second IV blew.  So, they have to start another one.  Plus, get more labs.  They want to see what her WBC is today in comparison to what it was yesterday.

I turned her screws this morning and afternoon.  Only one more time today.  They are getting harder to turn already and it is really hard to do it.  It grosses me out and I know it hurts her.  So, to cause more pain for her is awful.  Truly awful.  Especially since we have to turn the screws three times a day - which is six times per day since there are two sides!  Plus, we have to clean the pin sites whenever they need it.  We have to keep those sites clean to reduce the risk of infection.  If she thinks it hurts now, I don't even want to think about how much it would hurt if they got infected.

I think she is going to give herself a brain injury with all the thrashing she's doing.  She swings her arms until you hold them down, then kicks until you hold her legs down, then she starts throwing her head forward and backward and side to side.  It is so awful.

I've had to show some pictures of her to her nurses so they know what she really looks like.

The IV team just came in to start a new IV.  It took four of them to get it in.

Can you imagine how scary this is for her?  Four nurses in gowns and masks inflicting pain, and your mom sitting in the room, not stopping it.

In summary, this is what has happened today:

Had to start an IV.
Had to get labs, not utilizing the IV, so they had to poke her and take blood that way.
Had to get more labs, but from two different areas of her body.  So two more pokes.
Had to clean the pin sites.  Still need to do it one more time today.
Had to turn the screws, two times on each side.  One turn per side still to go tonight.
Got two x-rays.
Got an EKG.

If you only knew how hard she fights all of that stuff.  She is WIPED OUT.  This room is freezing and she's a sweaty mess.

I have to say that her nurse today was very apologetic to Harlie.  I could hear the compassion and sincerity in her voice as she told Harlie over and over again that she was sorry.  She said the night nurse was going to have to clean her pin sites - she just couldn't inflict any more pain on her.  I hear ya, sister!

Well, as you might be able to tell, I work on my blog post throughout the day.  So, things are constantly changing.

I just spoke to the doctor again (love him!) and he said her WBC went from 25 to 30, which is high.  They also did another test that tells them the cause is most likely bacterial versus viral.  And based on her most recent x-rays, they are suspecting that she has pneumonia.  They are having Infectious Disease (ID) consult to see if they can target the bacteria a little better so they can get the right antibiotics in her.

We have taken a few steps backward.  And there is definitely no more talk about going home.

Here are the meds she's on right now:

IV Gentamicin
IV Lasix
IV Clindamycin

We'll see what ID says tomorrow when they come to see her.

Tom should be finishing his 200 mile bike ride anytime now.  They started at 6am.  It is now 8pm.  I hate that he is doing something so difficult and I'm not there to support him.  He is always so supportive of me when I run races.

Well, I'm going to go now.  Thank you so much for all your incredible support.  All of your kind, heartfelt messages are really helping me get through this.  I knew this was going to be tough.  And it is.  And will continue to be for a while.  Please know how much I truly appreciate you taking the time to comment, text, email or call and say nice things to me.  I can't respond as much as I would like.  But, I am feeling the love.

Much love back,
Christy xoxo


gba_gf @ Neurosis of the Stay at Home Marathoner said...

There are no words... Thinking of you & your sweet family.

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Beverley said...

I remember those deflated sorry. Thinking of you and Harlie and Tom too.

B-Mama said...

I know we're supposed to be strong for you, but I'm fighting back tears as I read this. I am so sorry. In the midst of disappointment, I am trying to think of all the good things you have going right now--a) you have a wonderful, thorough, skilled doctor and team who is caring for her, b) you are at one of the best children's hospitals in the country, c) Maggie is there with you and able to be a support for you, d) Tom is done with the race--way to go!, e) you have so many people praying and lifting you up, and f) Harlie has a fighting spirit (and so does her mom and family!!!) She will endure. You all will. The process just might look differently from what you initially thought. They are going to get her on some great meds and get her well! Praise God for antibiotics!!! Prayers tonight. xox

Susan said...

That's a bummer about the fluid retention and WBC. I hope with a few doses of antibiotics and getting past day 3 that things turn around quickly. I wish you were getting out of there but I'm glad that they are taking good care of Harlie. XOXO.