Post-Op Day 6

Whoa!  Look who's feeling better!!

She smiled twice this morning - and I got one of them on camera!!!  Woohoo!  And she's even changing the channels on her TV.

For the first time in almost a week - she can be focused on something outside of herself and her breathing.  I would say we are on the up and up!

Her night nurse said she had a "fantastic" night.  She slept well.  And they took her off the BiPAP and put her on CPAP to see how she would do with a little less breathing support.  And so far, so good.  

They rounded on her this morning and they are going to leave her on CPAP for at least another day or so. Her x-rays look better on the left - but her right lung still shows a large infection (or lung collapse).  The blood work shows that the antibiotics are working, because her WBC is way down from where it was two days ago.  Based on her cultures, they are changing her antibiotics again.  I can't remember what she's on now. 

Yesterday, her surgeon came by to see her.  On her way out the door she said, "Oh, yeah, and if you hear a pop when you turn her screws, don't panic.  That's normal."  Ew.  But, I'm glad she told me because you can bet your butt that if I heard a popping sound when I turned her screws I would FREAK.  So, maybe now I'll just be SUPER grossed out.  

I really liked how I was able to turn the screws all at once yesterday and not have the task hanging over my head all day.  So, I thought I would try that again.  But, I could only turn them twice.  I just couldn't make myself turn it one more time.  I wish I could ask her which hurts more - turning it once, three times a day, or turning it three times, once a day?  I guess I'm going to have to play with pain meds and turning.

Anyway, she has been a lot more awake today.  Which is a definite improvement.  But, she is still working pretty hard to breathe - even on CPAP.  And her lungs still sound horrible.  They are definitely not rushing her out of the CICU.  I asked her nurse today (who is awesome, by the way) and she said if she were to make a guess as to how things are going to go - she would say she'll stay in the CICU for another few days, and maybe be ready to go home by mid-week next week.  Oh boy.  

Trust me, I am NOT complaining!  Last night, after we left the hospital, Maggie and went to find some dinner.  We walked back toward the hotel and tried a sushi restaurant one of our nurses recommended.  We ordered a glass of wine and celebrated how different things were from the previous 24 hours.  I would rather hang out here for as long as it takes with Harlie improving versus going through another second like Sunday night.  But this does mean we have to think about some logistics.  But it's so hard to plan when you're working around her getting better.  Especially when she still needs the breathing support.  

Earlier today she had to come off the CPAP for a few seconds, and she turned grey.  As soon as her nurse hooked her back up, the color returned to her face.  So, while she IS improving, she still has a ways to go before we can leave the CICU.  

At some point, Maggie has to go home.  I guess we'll send her home Thursday or Friday.  And Tom's mom will bring the boys home on Friday.  It looks like Murphy will get in two practices before the last swim meet on Monday.  

For some reason I've had a really hard time writing today.  It's taken me all day to write this.  I think I'm getting a bit tired.  It's just kind of draining to spend all day, every day in the hospital.  And I haven't felt great the past few days.  I think I'm feeling run down.  Tomorrow Maggie is going to come to the hospital so I can go and do the laundry.  Hopefully that time out will be rejuvenating.

Oh, and we just ordered more We Heart Harlie t-shirts.  So, if you ordered off the blog, you should be getting your shirt in about three weeks.  

We are about to meet the night nurse, so I have to go.  Thank you for all your continued thoughts and prayers!  I am still feeling the love! 

Much love back,

Christy xo

Post-Op Day 4 and 5

Another tough day.  To cut to the chase, Harlie is sick.  She is worse than she was yesterday.  Which is definitely not the direction we want to go in.

Post-Op Day 4

They changed her meds.  They took her off the Gentamicin and Clindamycin and put her on Vancomycin and Zosyn.  All IV meds.

She has been suctioned about a hundred times today.  And she sounds so bad.  You can hear how awful her lungs are from across the room.  She's been sleeping 99% of the time.  We have to force her out of bed to try to go potty.

She's even worse now - at 6pm - than she was earlier today.  She desperately needs a bath.  So, we started to give her one (in the bed, of course) and the second I started to lay her down flat on the bed, she immediately desatted, turned blue and struggled to breathe.  We had to abort the bath.

They are going to take another x-ray and try upping and adding an additional diuretic med.  And they are considering moving her back to the ICU.  At this point, her current nurse and I, believe she is too much for the floor.  She needs more.

~~~~~~~

I wrote the above yesterday (Sunday).  Things got crazy, and then it was way too late to write.  It is now Monday morning at 8am and it is MUCH easier to write about yesterday and last night now that she had a good night.

Yesterday she was definitely going in the wrong direction.  She really scared me when we tried to do the bath.  It wasn't that she just desatted - she was struggling to breathe.  After that it was "only do what you absolutely have to" and it was obvious that she was going downhill.  I've been around and seen enough to know that things can turn quickly.  And I really thought that we were heading in that direction.  They agreed, because they transferred her to the CICU around 10pm or so.  They immediately rounded on her and within minutes they were busy helping her.  They got another EKG.  They stopped her feeds until things improve.  They got another chest x-ray.  And they hooked her up to BiPAP.  I thought they said CPAP, but I was mistaken.  BiPAP provides her a little more breathing support.

She normally fights anything that helps her breathe - but within three to four minutes, she slowly relaxed and fell asleep.  Her body is so freaking tired.

Over night, since her body was finally relaxed a little, she peed over a liter!!!  Woohoo!  You can already tell a difference...

Post-Op Day 5

And she's been awake watching TV for the last 45 minutes.  That is the most she's been awake since her surgery on Wednesday.

They need to get more blood for labs and they want to see if they can get a new IV in.  They don't want her fighting or getting all worked up, so they are going to give her some sedation.  Hopefully it works and I can turn her screws all three times at once, so I won't have to do it again today.  That would be awesome!

Well, it's 9:35am now and her nurse gave her a dose of Versed, Morphine and Valium and she was not relaxed.  She was still putting up a huge fight.  So, her nurse gave her another dose of everything and she STILL fought.  It took four of us to help get the IV in.  She wanted to put a larger needle in and she got it in, but Harlie fought so much that she lost it.  Crap.  They got what they needed for labs, but they didn't get that IV in.  I was able to turn her screws, though.  Since she was on a lot of meds, I took advantage and turned them three times to get it over with.  I also cleaned her pin sites, too.

Her nurse said that the two of us would be asleep on the floor with as much as she gave Harlie.  And she's STILL awake now.  She kills me.

It is now 11:20am, and they rounded on her.  They took x-rays last night and this morning.  And they said that her lungs already look better than last night.  Thanks to getting rid of one liter of fluids!  They also had more questions about her echo (ultrasound of the heart).  They have never been able to get a good study (because she fights so much).  So, the doc said she wanted her to be sedated again to do it.  When the nurse told her about her meds from earlier, she said to add Ketamine.  And more Versed.

It took twice the amount they initially thought to get her calm.  Crazy.  So, she's getting the echo now.  Hopefully that will answer all their questions, and will give us a good report to ease our minds.

It is so nice to see her so relaxed (look at how her leg is crossed).  Right now she is feeling no pain and that makes me feel less pain.

I know I make light of a lot of things.  And I joke about a lot of things.  I'm sure there are many a nurses/doctors out there that have wondered if I get how complicated she is.  I do.  I assure you.  But, it is SO hard to worry like I did last night.  My stomach hurt so bad.  And it's not a hurt that I can just stop.  What if she continues to get worse?  What if the meds don't help?  What if her heart and body just wear out?  All of that could happen.  We are not in control as most would like to think.  And you realize that real quick when you're standing by your child's bedside.

I stayed with Harlie and her nurse until Harlie went to sleep for the night.  Her nurse said she would be in her room the whole night.  And she said that she would most likely sleep soundly all night.  So, I left after midnight and took a cab back to the hotel room.

It would have been easy to be really sad and depressed at that moment - sitting in a deserted children's hospital, waiting for a cab while my daughter lay sick upstairs.  I was super tired and worrying like that about your child takes a lot out of you.  But, I had - what felt like the whole world - supporting us on Facebook.  I couldn't believe the outpouring of support for Harlie.  I felt all the strong vibes you were all sending and I let them help me through.

I slept for a few hours and then came in early this morning. It was SO wonderful to hear that she had a great night and that she made some progress.  The BiPAP was the right call.

Well, she started to fight the echo, and they aren't done getting what they need to get.  So, her nurse just gave her more meds!  Geez!

Anyway, I am so thankful that she seems to have already turned the corner a bit.  I think they will keep her on BiPAP throughout the day and night and see where we are tomorrow.  Hopefully the rest of the day will be pain free and restful for her.

Oh, last night I said, "Harlie, who loves you?"  And while her eyes were closed, she pointed to me.  Oh, the little things.

Well, that's it for now.  Thank you so very much for your thoughts and prayers.  All the good vibes you are sending our way are working.  I'm so, so grateful for all the love and support!

Much love,
Christy xo