Post-Op Day 7

Harlie is holding steady.  The swelling is definitely going down.  This is her attempt to smile on command...

As far as how she's doing, this is the summary:

It looks like she's plateaued in her recovery.  The past few days have shown no improvement.
Her x-rays don't appear to be worse, but they are not any better.
She doesn't sound any better, lung wise.
She was still working pretty hard to breathe while on CPAP.  So, this afternoon they put her back on BiPAP to give her a little more support, to see if that helps her more.
Due to the antibiotics, her GI system is revolting.
She is staying consistently negative in fluid - meaning she's losing more fluids than she's receiving.
She is sick and this is a yucky, stubborn pneumonia.

This afternoon, she got moved out of the cardiac ICU and into the medicine ICU.  The move was based on bed management, and not how she's doing.  This is not a step up or step down.  We're certainly not new to that.  And I totally get it.  But, it is a little disrupting.  I can't remember if I wrote about it before or not, but the only annoying thing about it is that what I'm told about where we are going isn't consistent.

To recap:

I was told over the phone prior to surgery that she would go to the cardiac ICU post-op.  But when she came out of surgery, she went to the medical/surgical ICU, 7th floor.

Then when we left that ICU, we were told that she would go to a medical floor.  But, we went to the cardiac floor (8th floor).  When I questioned why we were sent there instead of where I was told we would go, I was told that the cardiac floor has the right monitors, etc. to watch her heart.  Makes sense to me.

Then we went to the cardiac ICU (8th floor).

Then I was told today that we would be going to the surgical ICU back to where we went immediately post-op (7th floor).  Then they told me we were going to the medicine ICU (11th floor).  And, by the way, "the medicine ICU is actually better because they get more cardiac kids."  So, if it's better, then why were you going to send her to the 7th floor?  I just feel like I'm being talked into things sometimes.  And since I have NO idea which floor/unit is best for her, I can't be a part of the decision, I have to just go with whatever they say.  And that is difficult sometimes.

Plus, it's so great when you get to know a team, and the team gets to know your child.  And the nurses start to repeat.  It just makes a hospitalization less stressful.  For me and for Harlie.  As a nurse gets to know Harlie, they learn what works and what doesn't.  And as Harlie gets to know the nurse, she could potentially learn to trust him/her, which could reduce the amount of fighting Harlie does.  So far, in this seven day stay, we've been in four different units.

It's exhausting.

I know that no one can tell me when she'll get better and when we can go home.  I do know that this is the sickest she's ever been and she's had pneumonia several times.  She has never needed breathing support for this long.  But, I still have logistics to think about.  We can't keep the hotel room forever.  So, I asked the new team to give me their best guess based on the severity of her pneumonia, as to when we would go home.  You know, if you were a betting man, so to speak.  And they said another five or so days in the ICU, followed by a few days on the floor.

So, Maggie is going to leave on Friday.  I think I will try to hold on to the hotel room for as long as she's in the ICU.  I think I need the walk to and from the hotel each day.  And sleeping in the hotel will allow for better rest.  I'm afraid that moving into the hospital will help wear me down faster.  And I'm already starting to feel a little stressed as it is.  It is never easy to not know when you're leaving the hospital.  I'm reminded of when Harlie was six months old and had a chylothorax after her second heart surgery.  She was inpatient for over two months.  And we never knew when it was going to end.  It was awful.  And very trying emotionally.

I spoke with a cardiologist that has been following her this stay.  I think he's fabulous.  He said we could potentially look at transferring her closer to home.  I was immediately excited about the idea.  Being closer to home could change everything.  I'm thinking DC is where I would want her to go.  Then we could be with all the docs and nurses that know her best.

But, after talking to Tom, he reminded me that Plastics is still seeing her while in Boston.  So, if she went to DC, we couldn't have any follow-up with her surgeon.  So, that wouldn't be good.  Darn it.

I got out this morning.  Maggie came to the hospital and I stayed at the hotel, got our clothes together and took them to the laundromat.  After I put the clothes in the washer, I went for an easy run.  It feels like months since I ran last.  So, I ran two miles.  Yay me!  I know it's not much - but I am starting over, so I can't go crazy.  After the run and the laundry was done, I went back to the hotel, showered and went to the hospital.

While it was SO nice to be out, I think it made me want it even more!  I SO want to be back home, in my house, with my boys, my husband and my dog.  My life feels so very far away right now.

Okay, Harlie is asleep and Maggie and I are hungry.  I will update again tomorrow.

Thank you for all your continued thoughts and prayers.

Much love,
Christy xoxo