Friday Update

Harlie is still in the PICU.  They put her on a Lasix (diuretic) drip through her PICC line.  So, she's been able to pee off a lot of the fluid.  Of course, it probably helped that she wasn't getting any of her feeds or water flushes, so her body didn't have to process that fluid, too.  We fed her at 10am on Tuesday and she didn't get another tube feeding until 4pm on Thursday!  Poor kid.  The saddest part is that she didn't even care.  Not once did she indicate that she was hungry.  She must feel hunger pains, right?  I guess in her world, that just isn't uncomfortable enough to register or complain about.  :-(

Anyway, yesterday afternoon (Thursday) they took her off the Lasix drip and switched her to a different diuretic via the g-tube.  For some reason, they have her back on Lasix (via g-tube) AND the other med today.  I thought they said that they wanted to give her body a break from Lasix.  Apparently your body can become unresponsive after continued use - even though she's really not had continued use.  I don't know.  Things are always changing.  I got a little education on diuretics/kidneys.  Apparently each one targets a different part of the kidneys and/or tubes.  So, that's why they prefer to use one versus the other, or why they want her on both.

How are you living without that knowledge???

All joking aside, my brain feels as if it's reaching some kind of maximum capacity.  I'm forgetting the little things.  Like last night (Thursday), Tom brought me dinner.  And he let me leave afterwards to go get the boys and tuck them in, while he stayed with Harlie until she was settled for the night.  Unfortunately I missed a visitor - Aline from Saxon Shoes...

Harlie and Aline

She brought gifts for Harlie and me from her and Sarah - thank you so much you two!!

Tom and Harlie.

Before I left he told me that the boys did NOT need baths and I said, "Oh, good, thanks!"  But, when I got home, I gave Cooper a bath. Despite the fact that when I told Murphy to get in the shower, he told me he got one last night.  You'd think that would trigger something, right?  Nope.  Then after I gave Cooper a bath, I went into Murphy's room and said, "Why aren't you in the shower?"  So, he told me again that he got one last night.  Still nothing.  So, when Tom got home, I told him that Murphy didn't listen to me and never took a shower.  Oh boy.

I am always more energetic in the hospital than when I leave.  I guess some guard is up, or adrenaline, or something.  And when I leave, I relax and realize how freaking tired I really am.  So, when I pulled into our driveway, I couldn't wait to be horizontal.  I went inside to get the dog.  Tom didn't feed him, so I assumed he needed food and to go outside.  He wasn't home.  So, I went across the street to see if they had the dog with the boys.  And they did.  They even fed him and took him out.  I love my neighbors.  After I collected the boys and the dog, I thought I should walk him one last time so I wouldn't have to do it later, when I was in a coma.  Plus, I thought that would be a good time for the boys to tell me about their day.  Cooper took a toy with him and during the walk (it was getting dark by this time) he lost a piece from the toy.  So, we had to walk back and get a flashlight so we could go find it.

I probably should have said, "tough it, kid, don't bring toys" but I couldn't.  They haven't seen much of me and I didn't want to be a jerk.  So, we walked our path with the flashlight.  Still couldn't find it.  So, we walked back.  I was SO freaking tired.  And annoyed.  And I was trying so hard to be patient and loving, too.  Murphy told Cooper he would go find it in the morning.

Then we went inside and they wanted bedtime snacks.  Oh, please just kill me now.

So, I gave them chips and watermelon.  Then I went upstairs and gave Cooper that unnecessary bath.  Awesome use of the very little energy I had remaining.

Finally, I went downstairs, made a drink, folded a load of laundry and watched my new favorite show, The Big Bang Theory.  Then I tried to stretch my injury (piriformis) and fell asleep on the floor.  By that time, Tom was home and he told me to go to bed.

Also, on Wednesday night (did I already blog about this?) I couldn't find a parking spot when I took her to the ER.  I had to go through both garages and still no spot.  They gave me a card for valet parking, which I never do.  I'd rather park myself.  Anyway, I had to valet and then we went into the ER, etc.  When I left that night it was 10:30pm and I looked for my car keys and couldn't find them.  Then I remembered that I used the valet.  I asked the security guard downstairs how I get my car.  She said, "They left at 10pm."  Sigh.  She found my keys and said my car was somewhere in the garage next door (a totally different garage than the one I know and use).  She said a guard would walk me to my car.  But, they never came.  So, I went off to find my car.  In a dark garage. Alone.  At 10:45pm.

Now, if you know me well, you know all my alarms were blaring.  I've watched enough true crime to know this was NOT smart.  Yet I went anyway.  You either have to go up or down the ramp and I chose to go down.  Because in every scary movie they always go up and that never ends well.  I walked around a few corners and found my car.  I'm alive, so that's good.

Anyway... whew I digressed!

I think these are the problems with Harlie:

• Oral diuretics were not working, and she continued to accumulate fluid.  Why were they not working?
• The chest x-ray shows edema (too much fluid), despite the fact that she is peeing well (on diuretics) and that her weight is down to pre-infection weight.  If she has too much fluid, she would weigh more.
• Her Creatinine levels have been high.  I'm not sure if that's still a concern or not.  
• She's still on 60% oxygen (which is more than I could give at home).
• Why has it been a struggle for her to get off the oxygen all year long?  Is there a connection?

I think that's it.  So, they called nephrology (kidney docs) into the mix.  They came and spoke to me yesterday.  Again, I had to say that I am not accepting new specialists.  I will say that she seemed to get (and perhaps even like) my sense of humor.  She mentioned us seeing her as an outpatient.  Ugh.  I showed my disappointment, but said that I will work it into our schedule if necessary.  I just need to see that it is, in fact, necessary.  So, they might do an ultrasound of her kidneys today.  We'll see.

They took another chest x-ray this morning.  To my untrained eyes - her left lung looks better, but the right looks no better at all.  Her abdomen looks more cloudy in the earlier x-ray and it looks more clear in today's.  They are about to round, so maybe I'll have more info in a few.  I guess I'll just wait to type anymore until then since things might change.

Okay, they rounded.  She is negative 700 mls or something.  And with that, they would have expected for her x-rays to be better and for her oxygen requirement to be lower.  However, that is not the case.  So, they are going to be more aggressive with the diuretics, upping both medications in dosage.  They are going to do that for the next day and see where we stand tomorrow.

Her trach secretions are real thick and sticky, and all things aside, if I were at home, I would up her water intake via the g-tube.  But, that complicates the fact that we are trying to get rid of fluid.  So, I don't know what they're going to do as far as that goes.  Clearly we need to get her to the point that she's on her home regimen, and able get rid of fluid appropriately.

To hear them discuss her, is both comforting and scary.  Comforting in that I'm not an idiot when she stumps me and I don't see a clear answer.  Scary in that they are very educated, she is stumping them and there isn't a clear answer.

It is now almost 5pm, and I am just now able to try to finish this post. We had lots of visitors today...

Amy (Harlie's speech therapist).

And Terri, Harlie's home nurse.

Lynda came by earlier and brought me some apples, Diet Coke and peanut butter M&Ms.  The meal of champions!  And she brought Harlie some Lego Friends mini sets with a cat and bunny.  She's been playing with that almost all day.  She plays with it even while watching her iPad.

And Melissa came by (a friend and Girl Scout mom) to see us.  We had a full room with lots of laughs!  While Terri was here, I ran an errand.  There is a toy I wanted to get Harlie for her birthday.  But, I thought she would like to play with it here, so I went and got it.

Squigz!  She loves them!

Harlie got that ultrasound of her kidneys...

 A different nephrologist came and spoke to me.  He is great.  And after looking over everything, he determined that her kidneys are working fine.  Because of her heart defects, her kidneys are going to be negatively affected.  But, in her case, it's still very mild.  Before the ultrasound he said if her kidneys are full, that's good (because it's an acute problem, and not a long term problem), but if they are small, that's bad.

Hers are plump, so that's good.  That means there's an acute problem that we can (hopefully) find and fix.  His theory is that her gut is not absorbing the diuretic.  Her gut is not absorbing the diuretic because it is not well perfused, which points back to the heart.  For now, we have to help her with the fluid problem.  He said he can fix the diuretic issue with more meds.  Something he said made me ask - short term meds or long term meds?  LONG TERM!!!  WTF?

So, now the fear is that she won't be able to get rid of fluid on a regular basis?

In thinking everything through - nothing is really adding up.

It is now 6:15pm and she is STILL on 60% oxygen.  They added some feeds back into her schedule.  She is now negative 400 mls (700 earlier).  Her trach secretions are DRY.

When they rounded this afternoon they said the goal is to get her negative one liter (1,000 mls).  They are expecting her to be there tomorrow.

At this point, I am starting to doubt how fluid overloaded she really is.  But, I'm no doctor.  And her blood pressures are low.  And to fix that, you usually give more fluids.  Another indicator that she's dry?  I don't know.  I asked the nephrologist how accurate those chest x-rays are - could it be something else other than edema???  He said he would talk to her pulmonologist.  Maybe a bronchoscopy would be helpful.  I don't think the team agreed necessarily.  But, we'll see where tomorrow puts us.

The bottom line is that we don't know what's going on.  I wonder if the underlying problem of what's currently going on, has always been there (well, at least in the last eight months of her needing oxygen) and that the trauma of the infection and the subsequent OR trips have tipped her balance.  Now, the fluid got the best of her, the diuretic wasn't working and she's way out of balance.  And now that underlying (unknown) problem that made her require oxygen all year is finally becoming more apparent.

Does that make sense?

I don't want to over think it and I don't want to make this more complicated than it is.  But, something isn't right and I've been thinking that ALL of 2013.

Okay, so the PICU attending just came in and went over a new plan.  He wants to slow down on the diuretics.  He thinks she's dry.  And I totally agree!  So, he made some new goals - sats above 85, and negative 500 instead of 1000.

It still doesn't make any sense that she's on so much oxygen - she was on 60% when she was edematous and she's still on 60% now that she's dry.

He said that he thinks that it goes back to pressure.  She has passive blood flow, so if there is too much pressure, blood won't flow where it's supposed to and if there's not enough pressure, it won't be able to get to where it needs to go.

If we don't have a better situation by Monday, we are probably looking at more invasive studies - bronchoscopy and/or a heart cath.

Her trach secretions have been so dry and sticky that I haven't been able to get a suction catheter through it.  Seems she's been completely plugged.  If she she's been plugged, how the heck is she breathing through it?  Maybe that means she's breathing through her mouth and nose.  So, the oxygen is at her trach - how much is going in through her mouth and nose?  Maybe that's why her oxygen has to be so high?  And if she's so dry, maybe she's plugging in her lungs, too, which would definitely lower her sats.  ARGH!!!

At this point, my head hurts.  As it is now 9pm, it is has been a few hours since my last conversation with the doctor.  After he left, I felt very heavy.  And full of worry.  I don't want to go down this road (heart/pressures/lung issues).  But, my hope is already refilling - hoping that somehow there is any easy answer to all of this (mucous plugging) that we somehow overlooked.  I don't know how possible that is, but it is what will get me through to Monday, when more decisions will be made about further testing, future plans, etc.

Until then I will hope and pray that upping her fluids will somehow fix everything.

Sorry for the crazy, long, all-over-the-place blog post.

Much love,
Christy xo