Saturday, July 17, 2010

Post-Op Day 4

I'm going to try to be quick because I want to get back in her room.  But, I also wanted to give you an update. 

Unfortunately, Harlie has taken a turn for the worse.  And pretty much in every area.  And while I can't be as positive as I would like to be (in my writing, I mean) I am not overly worried.  Yet. 

Here's where things stand:
  • She's back on pressure support (for breathing).  She was on normal trach collar for a while, but she just couldn't handle it long-term. 
  • She is taking a lot more breaths per minute, which is not a good thing.
  • Her x-rays today look worse than yesterday's, with more hazing in her left lung.  They are treating her for pneumonia at this point, until the respiratory cultures come back with a more specific growth.  They are hoping that the pressure support will help get air in the area that appears to have collapsed.
  • They've added another IV antibiotic - so she's on two now.
  • She hasn't pooped.  At all.  And her belly is distended (hard and swollen).  They have been giving her something to help with this for days now.  Seriously - 4 doses of Miralax, 6 doses of colace, 4 glycerin suppositories, and 1 enema.  They are stumped.  We turned off her feeds and are giving her another six hours (from 11am) to give her another enema. 
  • Her blood pressure is down (not good and her non-pooping status probably isn't helping).
  • Her heart rate is up (over 170s).
  • She's on 100% oxygen and maintaining sats of only 80 (a normal person has sats close to 100). 
  • And she went back into junctional rythm, but this time it affected her blood pressure and heart rate.  So, they are watching that closely.  Still haven't turned the pacemaker back on, so it must be okay.
  • And her chest tube drainage dumped a lot of fluid over night - a large increase as it was beginning to taper down yesterday.  So that's a bummer.
  • Her white blood cell count was still 29 this morning.  Bad that it didn't go down, but good that it didn't go up, either.
  • She's still febrile on/off and the cooling pad is what gets her down, but after a while of it not being on, her temp climbs again.
I think I mentioned that one of her atrium lines was stuck.  Well, I got to hold her in my lap for a while yesterday, so maybe the moving around from the bed to my lap, etc. loosened it because when the surgeon came, he tugged and it came right out.  So, that's good.

I really do wish I had more a positive report for you.  She is truly miserable and hasn't really been awake since Thursday.  She tosses and turns every minute it seems.  Hopefully today will bring us some good movements (if you know what I mean) and hopefully that will start a good chain reaction. 

As always, I'll do my best to keep you posted.  I know some of you may be worried about me and my spirit.  But, I really am doing okay.  I have managed to get in all my training runs in the early mornings and even my long run today (a recovery week, so it was a short 5) and perhaps that has helped with my spirit and stress.  Plus, I have loved all of our nurses and laughing with them has been healing, too. 

Although last night one of Harlie's roomies (there are three patients to a room in the pod we're in) passed away.  She was three months old.  It was really weird to think that she passed just 10 feet away from where we're standing.  And the other little baby has been alone every day.  Not that I'm judging his family, because who knows what's going on there.  But, both patient situations made me want to crawl in bed with Harlie and hug her tight.  Harlie is so dearly loved.  And we are so blessed to be a family. So, don't worry about me. 

Thank you again for all your support and prayers. 

Much love to you all from DC,
Christy

18 comments:

Allie said...

Love you Christy. Sending you lots of good vibes. You do what you need to do and keep going - we are with you.

Anonymous said...

oh wow, that last paragraph has my eyes tearing up....

thinking of you and your family and sending so many prayers your way.
Kat

Anonymous said...

We're thinking lots and lots and lots of good thoughts for you guys. Hugs, hugs, and more hugs.

Anonymous said...

Um, I forgot to sign that message above.

"Karin"

Anonymous said...

How much of her pain meds have they removed/reduced? (fentanyl etc)...is her constant moving withdrawal?? Another HLHS 3yo just went home after his fontan 3 months ago and we had many poop prayers for him....so we can say some for Harlie!

This is still early days .... our HLHS babies need lots of time to get over things....all on their time table!

Keep running and laughing...say Hi to everyone for us.

Beverley and Leyda (testing a return to 2litres today!)

Tanya said...

More prayers from our corner of the world as well.

Anonymous said...

Thinking about you guys!

Anonymous said...

I'm so sorry to hear Harlie has suffered a setback. I hope she perks up soon, and her poop gets moving.

Continuing to think of you all.

Lisa
Hampshire, UK

Susan said...

I'm so sorry that things are not going as well as they could be. I will be thinking of you guys, hoping to hear some good news soon. I'm glad you are in good spirits. I think you should be. Harlie is a fighter, history shows she has the strength to beat this! (((((HUGS!)))))

Anonymous said...

Prayers, prayers and more prayers to all. Love you all. Sue & Ron

Rebecca said...

You amaze me with you positive attitude and strength. It is no wonder that Harlie is a fighter with you and Tom for parents. We are praying for her recovery. If you need me to do anything while you are away - please let me know. Glad to hear you are able to run and decompress. All my good thoughts are coming your way.

Janis @ Sneak Peek At Me said...

I'm sad to read that things are not going well right now. I am sending some healing vibes and "movement" vibes your way.

So sad about her two roomies... ;(
Susan is right Harlie is a fighter and before you know it sahe will be awake and fight you -- just as she usually is! ;)

I'm glad that you are in pretty good spirits. I know one thing that worked for me when Austin spent a month in th hospital was I Love Lucy, might sound craxy...but the nurses would even stop in a laugh sometimes. It really is the best medicine.

xoxo
Janis & Austin

Anonymous said...

We are praying for you all and love you all TONS !! Mike and Marcy

Heather said...

not worry about you? okay, right. worried about you and Harlie and everyone else. I so wish everything was going awesome and you were both on your way home right now. you have every one of my thoughts and my prayers and my support coming your way. please please please get better soon Harlie.

Anonymous said...

Just wanted to say hello, I have been following little Harlie's site since I was in nursing school. I've been reading for about a year and never commented, but this post has me just feeling as though an encouraging word might help. I'm a nurse on a surgery unit, which also happens to be the only unit on the hospital that takes trach patients. Her story has been such an inspiration as to why I became a nurse. I read as often as I can and look forward to hearing good news! I have a special place in my heart for trach patients and hearing day to day stories makes such a difference to me as a nurse! My thoughts and prayers are with her, you, her doctors, nurses, respiratory therapists, and everyone who comes in contact with her. Wishing the best,
Sara

Michelle Van Meter said...

Continue to think of you and Harlie and the rest of your family. Hopefully things will start to take a turn for the better. Know that you are in my thoughts and prayers. Glad that you are getting a chance to run for some stress relief! Continue to keep us posted as you are able....

B-Mama said...

We are on our knees praying!! I love the thoughts of one of your commenters that she is going to need TIME to recover. We are going to pray for bit by bit improvement in time. Every little measure, we will celebrate. Hugs to you... Keep up the good running!

Anonymous said...

Oh Christy, I am so sorry for the setbacks Harlie is facing. Susan is right, that little gal is a fighter and she will pull through this! We are thinking of you all here in Ontario, Canada!!

Annette B.