We are fine.

Hi all.  I feel the need to let you know that we are doing fine.  We made it home Saturday night - after a very yucky, rainy, dark drive home.  Waiting to be discharged on Saturday truly tested my patience.  But, I guess that's the way it is when you're trying to get OUT of the hospital.

We had a friend's Christmas party that night.  I wondered if we could still pull it off - time-wise and spirit-wise.  I just didn't know if I could go and "party" with all of this heaviness on my mind.  How could I have a normal conversation?  And what if they would rather us not come since we might bring the mood down?

Well, it went great.  We walked in and my friends gave me hugs, compassionate looks, smiles and a drink.  And everything was fine.  We had a great time and it was exactly what we needed!

Me, Michelle, Carol and Amy

Tom and me

Thanks Bert and Amy for having us!

When we are in the hospital, I am forced to view Harlie from a medical perspective.  To see her "on paper" is very different than who she really is.  And I am always anxious to leave the on paper version at the hospital, so I can see the little girl she really is, again.

Somehow, when we get home, and she returns to being the happy little girl she is, everything just seems better.  Even if it's not.  Yes, I am still very disappointed in Friday's information.  But, I have to tell myself that Harlie is still the same person she was on Thursday.  Nothing has changed, except we know more than we did then.

I find myself wishing I could ask some tough questions and get some answers.  Here's what I really want to know:

1.  On a scale of one to ten, how bad is this?
2.  If her pressures don't improve with intervention, how long till things get worse?  One to three years?  Three to five?  Five to seven?  WHEN?!?!?
3.  If she went from being on room air, no Lasix, small dose of Enalapril, walking at school to being on oxygen, adding Lasix, adding more Lasix, doubling the Enalapril and needing the chair at school, in one year - what will the next year bring?  The year after that?

But, I won't get those answers.  Not now anyway.  I have to take a deep breath, focus on the now and wait for more tests and the information they provide.

The first thing we have to do is to get a sleep study.  I always thought that when we finally did a sleep study, it would be to find out if she could be decannulated (removal of the trach).  I can't lie - knowing that's not the reason, hurts.  We've just been so focused on fixing her airway problem.  And at this very moment, that doesn't matter anymore.  But, maybe that will change in time.  I hope so, anyway.

We are also experimenting with her oxygen and her sats.  You might remember that the doctor said that if she could tolerate low sats, we might be able to have her be free from the oxygen during the day.  Or at least parts of the day.  And then put her on it at night.  It seems so far that she hangs out anywhere from the mid-70s to the low 80's.  She used to be high 80s to the low 90s.  :-(  Still trying to figure out what I want to accept and what I'm comfortable with.  

For the most part - I am fine.  Really!  I definitely have my sad moments.  But, I am working hard to focus on the positives of now.  I think one of the things that makes me sad is that we can no longer be "carefree" and fun.  We use to be like that - eight years ago.  The reality of it is that a lot of the fun stuff we see other families do - especially at Christmas - we just don't have the energy to do.  Our priorities and how we get through the day is different.  And, for the most part, we've been alright.  It's just harder this time of year (and summer - summer is tough, too).  And I know that no matter what the future holds - we will never be the people we were before Harlie's birth.  But Friday didn't change that at all.

But, Harlie is happy.  And she is doing really well in other ways.  Her expressive growth the last few months has been amazing.  For example, the other night a friend asked Harlie if she was excited about Christmas.  Harlie immediately responded, "Yeah."  Then she asked her what she wanted Santa to bring her, and Harlie immediately said, "Presents."

There are a few small miracles there:

1.  She immediately responded to questions.  Her response time is appropriate - and that is a HUGE jump forward.
2.  She said "presents" a word I've never heard her say before.  And I had no idea what she was going to say.  I have been speaking for her for seven years.  She spoke for herself - without my help.  Another HUGE jump forward.

The next morning, I wanted to show her nurse this new skill.  So, I asked Harlie the same question - What do you want Santa to bring you for Christmas?  And she said (and signed at the same time), "play-doh."

WHAT?!

Well, I wasn't expecting that!  So, again she spoke for herself!  Without my help!  HUGE!  When her teacher came that afternoon, I told her about our "conversations."  She asked Harlie, too, just to see what she would say.  Harlie said, "play-doh" then her teacher asked, "What else?"  And Harlie said, "ice cream."  Well, I know what she means - she wants the ice cream machine play-doh set.  She has pointed at it every time the commercial comes on.  She has been such a good little girl this year,  I'm feeling pretty confident that Santa will not disappoint.

Here's another thing... her and Cooper have been playing so well lately.  And they look so darn cute because they are the same size.  Anyway, yesterday, they were on the couch, playing Minecraft together using two separate devices.  Their conversation:

Cooper:  Harlie, I gave you some gold.
Harlie:  Gold?!
Cooper:  Yes, I gave you a chest of gold.
Harlie:  Chest of gold?!
Cooper:  It's right there.
Harlie:  She found it and laughed.

Seriously cute stuff.

I know this is what you would hear from a two-year old...  Makes it indescribable to hear it at seven.  Who knows what else is in that head of hers!  And if she's made this kind of progress in just a few months, where will she be a year from now?

Focusing on the positives...  Will deal with the negatives as they come.

We are fine.  Really.

Thank you so much for thinking of us, writing to us, reaching out, praying for us, buying shirts (which will be sent out today - sorry for the delay!) etc.  We are more grateful for your support than you will ever know.

Much love,
Christy xo

Back in the hospital

Whew!  I can't seem to keep this blog updated.  Harlie is a moving target lately.

Monday was Labor Day.  Tom and I took the boys to the pool.  Harlie can't go because of the PICC line (which can't get wet) and of course, the insane amount of oxygen she's on.

Cooper, Philip (our neighbor) and Murphy

Tom throwing Cooper.

Murphy, Philip, Kaden and Cooper.

I took the last photo and posted it on Facebook.  After seeing so many happy pictures and status updates about how great summer was and how sad most people were that it was over, it made me think about how I felt about this summer.  My caption - Good effin' riddance Summer 2013!  I wish I could have hash tagged it (which I never do) as "worst summer ever" but - sigh - it's just too close to call a clear winner.  There was that one summer that I feared her death the whole season... so that sucked, too.

Anyway, I'm not sure where our current situation falls.  The end of summer or the beginning of fall?  Because if it's the beginning of fall, that's not a good sign.

Tuesday, September 3

The first day of school!  Murphy rushed out the house to go get Philip, so I missed our photo of him under our tree.  Darn it.  So, Philip's mom and I followed them there.  I carried Murphy's school supplies (since I forgot them the other night) and took photos.

Philip and Murphy

Philip and Murphy.  I don't know why Murphy
has such a hard time with photos... grrrr.

Crazy.  

Murphy unpacking.  

Murphy ignoring my request for a smile.
Looks like he wanted to get serious about school.

Of course the bus came to the house for Harlie.  When they tried to reach me last week, I was in the hospital, so we never spoke.  The bus came and Tom had to go out there to tell the driver she would not be taking the bus for a while.  It made us both very sad.  To be surrounded by healthy children and know that one of yours isn't, is hard.  Living with grief every day....  And I've been feeling a lot more anger than usual in the past eight months.  I just feel like I'm running low on grace.  We have such an extreme situation in so many ways.  She's not textbook anything.  One problem complicates another problem's solution, etc.  And when things are bad for a while, I always start to wonder, is this the beginning of the end?  Is this going to be our new normal?  I hope not.

I spent the morning making a bunch of phone calls and sending emails.  And I scheduled an appointment with Harlie's pediatrician for 1pm.   I sent Cooper to Bethany's house, and Terri and I took Harlie.  As we were walking out the door, she realized where we were going, and started to cry.  She really has so little energy and had no interest in getting off the couch.  Then she signed "potty."  Never fails.  She cried and sat on the potty for a little while.  It occurred to me that she could have been stalling.  So, I told her that Dr. Derco was not going to hurt her.  And she got off the potty and went into the car.

Her doctor said that she had pitting edema, which basically means that fluid was accumulating in her soft tissues.  I guess her lungs were running out of room.  She's also up four pounds from just three weeks ago.  Anyway, he said she needed more Lasix (a diuretic to help her body move the fluid into her kidneys so she could pee it out).  Unfortunately, her one daily dose was scheduled for 2:30, so it was going to be a while before we would be able to see a difference from adding a dose.  He called her cardiologist and then her cardiologist called me a little while later.  After her doc was done with his exam, I said, "See?  No hurt.  Remember when I told you that it wouldn't hurt?"  I really want to get her to the place where she trusts what we say.  What a difference that would make with her fears (and subsequent behaviors)!

We rushed home after the appointment because I really wanted to walk with Murphy home so he could tell me about his day.  At about the time I was leaving to get him, Harlie's Medicaid case worker got to my house.  She did an overall assessment of our situation and upped our nursing hours from 10 a day, to 16 a day.  So, that's good.  Luckily, the school was running late (first day and all) so I made it in time to chat with a few parents and then walk home with Murphy.

Classmates after school.

He had a great day and likes his teacher, so that's awesome.

Then we went home and I spoke to Harlie's cardiologist.  He wanted her to have IV Lasix instead of oral Lasix.  So, I called the infusion company to see if they could provide the IV Lasix.  The manager that I spoke with said it wouldn't be until Thursday till he could get it.  And if she needs it, she can't wait that long.  He also said that he wouldn't even be comfortable with us giving it to her at home.  It lowers blood pressure, so he would rather her be monitored.  I think the general thought was that if she needed it, she needed to be in the hospital.  But, we are not the norm, and I have IV access (clearly not the norm) and I have a mini-ICU at my house.  Maybe that makes me feel like I'm more capable than I really am to keep her home and nurse her through this.  I don't know.

Yet I still made her come with us on a walk in the evening with the dog.  She didn't want to go, but we put her in the jogging stroller with an oxygen tank and I think she enjoyed the fresh air.  It's always so fun to see Rooney run his heart out!

Anyway, come bedtime I gave her a second dose of Lasix.  After that she only peed once.  Whereas the last time I gave her a second dose at bedtime (Saturday night) she peed twice.  The night was rough and I had to get up several times to see why she was alarming.  Now that she's on so much oxygen, if she alarms, I have to go in immediately to see why.  Her tubing could be disconnected or something and without the oxygen, her sats sink in to the 60s in a matter of seconds.  No exaggeration.  Anyway, I was tired this morning for sure!

Wednesday, September 4

Once I was up and Murphy left for school, I emailed her cardiologist and pulmonologist to give them an update (and to tell her cardiologist that we couldn't get the IV Lasix).  Dr. G. (cardiologist) emailed right back and after going back and forth a few times with more details, he said it would be best if I just brought her into the ER now.  Her belly is distended and that might mean that oral Lasix wouldn't work as well, so she needs IV Lasix.

I was walking the dog with Cooper when I got that last email and was kinda far from the house.  So, it took me a while to get back.  But, that gave me some time to get Cooper squared away.  My friend Michelle had just sent me a text telling me she was available, so I called her.  Her and Sally came right over.  They took Cooper to the park.

Then Cooper and Rooney went to Bethany's house for the rest of the day.  And Murphy went there after school.  Then the boys went across the street to Philip's house for dinner.  His mom is making dinner for them tonight and tomorrow night.  Oh, what would I do without my neighborhood???  Even though our life is kinda crazy, they are entertained, loved and well taken care of.  So, thankful!!!

As we pulled into the parking lot of the hospital, Harlie saw where we were and yelled, "No!" from the backseat.  Ugh.

So, we got to the ER and saw some old friends.  A nurse that we had years ago was back!  It was so good to see her!  She went to a different department for four years and today was her second day back in the pediatric ER.

Then Dr. G. (her cardiologist) came by to see us.  And they did an echo (ultrasound of her heart) just to make sure all the extra fluid wasn't negatively affecting her heart.  Then they got a chest x-ray and an abdomen x-ray.  Her chest x-ray definitely shows a lot of fluid - on her right side especially.  And it's now in the chest cavity instead of just being in her lung tissue.

She's now been admitted into the PICU (last time we were in the progressive care unit, which is a step down from the ICU).  Funny how you get comfortable somewhere.  At first I hated the PPCU, but being in that room made it so much better.  And I got to know the nurses and team.  In the PICU, it's a whole different team.  Of course, I'll get used to it here, too.

She's also doing a lot better than when we got here.  And she immediately asked to sit in the chair, with the table and the computer.  Of course, she's not been fed or had any water flushes since 10am.  And apparently, you can be dry in some ways and fluid over-loaded at the same time.  So, that makes getting her balanced easy.  Not.

They have now started her on an IV Lasix drip.  Her blood pressures have been low today, so they had to get some meds to have on hand just in case they need to give her something quickly to raise them.

We already had some visitors - Niki and Katherine - some of my running friends.  I forgot to get a picture.  Darn it.

It is now after 9pm.  And I am pooped.  We are about to give Harlie a bath, and put her to bed.  Then I think I'll go home for the night and return early tomorrow.

Oh, one other thing... today at Harlie's school, a lot of the moms organized all the kids who had We heart Harlie t-shirts to wear them today to school.  So sweet!

This morning.

Thank you for all the wonderful support and love!!

Much love,
Christy xo

Post-Op Day 2 - 1st Update

Well, a lot has happened since yesterday.  I'll try to make this as concise as possible.

Yesterday they pulled the central line in her neck.  We got her all cleaned up and changed her trach ties.  She still has an arterial line in her right wrist. She wants that gone.

We also got her in a chair.  Which is kinda funny, because she stays in the same position regardless.  So, I don't really see the point.  It takes an insane amount of work to get that accomplished because of all the lines.  But, she sat there for a while.  She kept on communicating that she wants to sit up - but of course, she can't.  We will have to work on getting her in a more upright position today.  I just don't think that can be accomplished in the hospital chairs.

While she was in the chair, we offered her some Pediasure in a small medicine cup.  And the most amazing thing happened.  She wanted it!  She drank it and asked for more.  And then she wanted to hold the cup herself.  I can't begin to explain how excited I was about this.  This is truly monumental.  I don't know that she's ever realized what hunger is or that it can be satisfied by eating orally.  If we could make that happen, I really think everything about feeding her would change forever.  Once she realizes the benefits of eating and drinking - well, Hallelujah!  Since we were hoping for this (since she hasn't had anything to eat or drink since Sunday) we put in her orders that she is an oral eater - so no tube feedings.  How exciting!!!!  I seriously was BURSTING with excitement and wanted to go running around shouting from the rooftops. All total, she probably drank about four ounces before falling asleep.

As if that wasn't exciting enough - Tom and I were leaving the room to go grab something quick to eat (she appeared to be sleeping) and I told her bye and that we would be right back.  She opened her eyes and and then waved bye.  Since she volunteered that communication, I signed and said "I love you" and you won't believe this... but she signed "I love you" back.  SHE SIGNED "I LOVE YOU" BACK.  And she blew us a kiss.  We were on CLOUD 9.  To put this HUGE event in perspective - it took a month for her to be nice to us after her last heart surgery in July.  A month!  And on Post-Op Day 1 - she signed I love you.  I couldn't be happier!!!

When we left her for the night all was well.  And we were happy.

At 10:30pm, we called to check on her and they had put her on CPAP (which helps you breathe).  They said her sats were getting into the mid-70s (she's in the 80's, baseline).  The problem is that she is in pain.  Coughing hurts her.  So, to avoid coughing, she is taking shallow breaths.  This doesn't inflate your lungs fully.  So, all those little oxygen producing parts get full of gunk.  Being on CPAP will help inflate her lungs.  Walking and sitting up helps, too, but those aren't options right now.

So, that was a real downer.  In typical special needs fashion - you crash from high to low pretty hard.  That part sucks.  Emotionally, that's exhausting.

So, they just rounded on her and after spending all night on CPAP they are going to let her try going back to just the trach collar.  Hopefully the night on it helped enough to get her over the hump.  But, if memory serves, this happened several times in July after her heart surgery.  Being on CPAP overnight just bought her another 24 hours in the CICU.  They want her off CPAP for at least 24 hours before going to the floor.  As of right now her sats are good, so our fingers are crossed.

This morning she was SO miserable.  The worst I've seen her thus far.  And it is so hard to watch her like that.  I can't help her and it kills me!  She is itchy (from the Morphine) and she was super agitated with the CPAP (she doesn't like the help with breathing) and she is way over the arterial line in her right wrist.  They gave her Benadryl and Valium and she calmed down a bit.  And they are taking her off Morphine and are going to put her on something else - Oxycodone or something.

I also think she is even more swollen today than yesterday.  The area around that cut out in the cast is pressing up against the cast.  It looks painful and she keeps trying to get her fingers in there.  Hopefully her ortho surgeon will come soon and let us know if that's normal or safe or something.  It looks horrible to me.  They are trying to get that fluid off her, but it isn't easy.  They are giving her another diuretic (either in addition to, or as a replacement for Lasix) but I can't remember what it's called.

They also put some compression things on her right leg (since it doesn't have a line in it).  I'm sure it's just another thing that's annoying her.

As usual, it has taken more FOREVER to write this.  It is now almost 11am and she is even MORE swollen than just one hour ago.  I am getting really worried.  Her middle is bulging through the opening in her cast.  Her face is way worse.  My heart just aches for her!!!

Tuesday afternoon.  So cute.  In a miserable sort of way.

Getting her all cleaned up on Tuesday.
I think it's funny how you feel compelled to smile in all photos.
Even when torturing your child.  Say Cheese!!!

Drinking Pediasure!  Go Harlie Girl!!!
You make us so proud!

Getting her in the chair.  Looks easy enough.

You might be able to see her right eye and how it looks a little bruised.
The swelling is worse as I type this.

This was first thing this morning (post-op day 2).
She was grabbing and swatting at everything.  

We still haven't seen her ortho surgeon.  I am really hoping she comes by soon.  Please keep your fingers crossed that she can get rid of that excess fluid soon.  She just coughed while on the trach collar and she didn't make a sound.  Complete silence.  Which tells us that even her airway is swollen completely around the trach.  That terrifies me.  

Thanks,

Christy

Follow-up appointment

Today, we had Harlie's follow-up with her cardiologist here in Richmond.  It went well.  They did an echo (sonogram of her heart) and it looked good.  She is still breathing pretty heavy, but she doesn't appear to be getting any worse.  


She weighed 33 pounds - 3-4 pounds more than prior to surgery.  I knew she still looked a little puffy!  There is NO way that she has gained that much real weight.  It is all fluid.  So, he upped her Lasix to three times a day (from twice a day).  We'll try that for a week or so and see how she does.  


Her sats (oxygen saturation levels) were pretty low - 76% (98-100% is typical for a healthy person).  Hopefully they will get better soon.


We go back to see him in three weeks.  


She is still sitting on the couch for the most part.  And she is still mad at me.  Or maybe she's just mad in general.  She hasn't even been nice to Murphy or Cooper, either.  She flat out refused to tell (sign) Cooper night-night.  And that is so unlike her!  I know I have to be patient.  She will bounce back.  She will just do it in her own time.  


Thanks!
~Christy