Post-Op Days 10, 11 AND 12

Post-Op Day 10 (Saturday):

Weekends in the hospital are always way more depressing than a weekday.  There are way less people walking around.  The cafeteria is bare bones - only offering a small portion of what is normally offered.  It really has a deserted kind of feel.  

And I didn't pack any pants.  I packed light and really wished I had my exercise pants to lounge around in while hanging at the hospital.  Plus, I needed to get out of here for a bit.  So, I walked to Marshall's by Fenway (which is less than a mile walk) and did some shopping.  I got some pants, a new running skirt (yes, I still have dreams of running again one day) and a couple little toys for Harlie.  I walked back and as I got off the elevator on our floor I heard someone yell, "Mommy!"  And when I turned around I saw Tom, Murphy and Cooper standing there wearing their We Heart Harlie shirts!!!  HOLY COW!!!  It was totally awesome and definitely one of the BEST moments EVER.  Tom got it on video and I've watched it so many times.  I can't figure out how to post it on my blog.  So, when we get home, I'll get Tom to work on it so I can show you.

It was more wonderful than I could ever say to be able to see them and have us all together again!  And you can see how healing it was for Harlie, too!  Just look at her face in this picture!

Happiest Harlie face EVER.

You'd think that by now the boys would cooperate when getting a photo - but nope.  Oh well, we're focusing on Harlie here anyway!  

When we all walked in her room Harlie showed no reaction to seeing Tom and the boys.  But, just a few seconds later she picked up one of her new toys and started calling Cooper and Murphy over so she could show them everything.  And then the nurse was awesome and let her get unhooked so she could hang out in the back of the room with us.  We had to leave to go eat and I thought she would be upset.  She was really mad about having to get back in bed.  And who could blame her?  She's been in that bed for ten days straight!  But she seemed fine with us leaving.  After dinner, we came back and hung out until it was bedtime.  Then me, Tom, Murphy and Cooper walked back to the hotel.  I can't even begin to tell you how many times Cooper has told me that he loves me.  He is so funny.  And affectionate.

The boys had never flown before, so when they landed in Boston, Cooper opened the window shade on the plane, looked out and said in a very disappointing tone, "What?!  We're back at the airport?"  

Anyway, I promise you, since their arrival - she's been a different girl.  No more breathing support, her spirits are lifted and she is more than ready to go home.  The ICU wanted to put her back on CPAP for the night.  But, I asked them to wait until she showed signs of needing it.  When I called in the morning, she was fine all night, and never needed it!  Woohoo!  I was hopeful that after going all night without it that they would move us to the floor and then discharge us home Monday.  

Post-Op Day 11 - Sunday

Saturday night went well.  When the team rounded, I asked them if there was any way to be able to get her discharged on Monday so we could all go home as a family.  They were agreeable.  They could see that she was so much better.  But, they said that she was being sent to the cardiac floor and it would be up to them.  In hindsight, I should have asked begged them to let her stay in the ICU and discharge her from there.  That way, we wouldn't have had to get a new team on board.  But, I guess I was thinking that the team that knew her better would have more pull.  Especially an ICU team.

So, she went back to the cardiac floor.  And they wanted some good x-rays of her chest.  So, we went to x-ray (the portable x-ray machine doesn't produce as good images I'm told).  We went down with no monitor, no oxygen and in a wheelchair.  This girl is ready.

The x-rays are still looking bad.  At this point they are saying it's atelectasis (collapsed lung) versus pneumonia.  But they also said that clinically, she's great.  Which she totally is!

Up and playing OUT of bed.

Hanging with Daddy, enjoying the view.

I think she reminds me of Tori Spelling.  Which, isn't a good thing
if you ask me.  I'm hoping she starts to look more like herself soon.  

As much as I wanted us all to fly home together (wouldn't that have been so much fun?!) it was not in the cards.  The 4pm flight today was booked.  And that really was our only obstacle.  Total bummer.

Post-Op Day 12 - Monday

After MUCH thought (oh, how I hate logistics!) we decided that it was best to try for discharge today, I will take her back to the hotel to spend the night, and then we take a cab to the airport first thing in the morning to catch the 11am flight HOME!!

They rounded this morning, and there is NO way they could guarantee they could discharge her in time to get us to the airport.  And I really don't need that stress.  Plus, she will be thrilled to be at the hotel.  I asked them to get respiratory in here to see if they can rig up some way for me to give her humidified air with the oxygen.  I will have a portable concentrator with us to take home and then we will ship it back here.

Of course we had to say good-bye to the boys...

She's not so sure about this brotherly love stuff.

Oh how I miss these crazy boys!

So, it's now 11am, and I have to run a few errands so I don't have to take Harlie anywhere but straight to the hotel.  One of our obstacles (which I totally wish I had thought of sooner) is the crazy amount of drool.  She is unable to manage them on her own (by swallowing) so she is drooling a ton.  And she hates it.  So, I need to go find some bibs or she will go nuts.  She hates for her clothes to be wet.

Going home alone with her was definitely not in the plan.  But, there's really no way around it.  And I really think I'll be fine.  It gets us home the soonest.  And that's worth it to me.  So, this morning, Tom and I went through all our stuff and he took home everything I didn't need.  So, I will have one small suitcase, the rolling oxygen concentrator, Harlie's backpack, my bag, the suction machine, and Harlie and the stroller.  I can do this!  I am SO excited about getting home I can't stand it!

One total bummer thing that happened today is her in-the-ear hearing aid stopped working.  I'm guessing there's some dried blood in there somewhere.  I tried cleaning it, but I still can't get it to work.  Luckily, we have her BAHA, which works great.  But, it's still very annoying that she doesn't have optimum hearing.  We are going to be very busy with a lot of follow-up appointments when we get home.  ugh.

Back to the boys coming for their surprise visit... Tom told me that so many of our friends back home contributed towards their plane tickets to get them here.  Thank you, thank you, thank you!  Not only was it GREAT for us to be able to see each other again, I firmly believe that changed the course of Harlie's recovery.  Seeing her family lifted her spirits and got her moving, laughing and playing again.  All things that caused a quicker progress in her recovery.  We would not be discussing discharge today, if it weren't for that wonderful visit.  What an incredible gift!!!  We are so, so grateful!

Well, I need to run and get some things straight before discharge.  Thank you for all your thoughts and prayers!  You all helped make a difference and we are so thankful!

Much Love,
Christy xo

Post-Op Day 3

She is definitely more swollen today.  But they say the third day is the worst.

And she's still holding on to a lot of fluid.  After two IV doses of Lasix, we haven't really made any true progress.

At 8am cardiology rounded.  Loved this doc and how kind and thorough he is.  When they put the IV in yesterday they got some blood for labs.  Her white blood count (WBC) is high, so they are going to start a broad spectrum antibiotic.  They also got some of her secretions last night to culture.

Her lungs sound coarse and crackly.  So it sounds like she's worse today than yesterday.  When she cries, she makes NO sound at all.  Which means she is swollen around her trach tube (usually there is a leak around, which allows her to make sound).

In order to get her home, she has to be fluid balanced - or at least heading that way - on oral (well, through her g-tube) Lasix versus IV Lasix.  He said if the IV Lasix works, and they send us home to find that the oral kind doesn't work, then we'll be in trouble.  So, she needs to get rid of lots of fluid, get switched to oral Lasix, keep the fluid off for a while, before we can be discharged.

Unfortunately, her second IV blew.  So, they have to start another one.  Plus, get more labs.  They want to see what her WBC is today in comparison to what it was yesterday.

I turned her screws this morning and afternoon.  Only one more time today.  They are getting harder to turn already and it is really hard to do it.  It grosses me out and I know it hurts her.  So, to cause more pain for her is awful.  Truly awful.  Especially since we have to turn the screws three times a day - which is six times per day since there are two sides!  Plus, we have to clean the pin sites whenever they need it.  We have to keep those sites clean to reduce the risk of infection.  If she thinks it hurts now, I don't even want to think about how much it would hurt if they got infected.

I think she is going to give herself a brain injury with all the thrashing she's doing.  She swings her arms until you hold them down, then kicks until you hold her legs down, then she starts throwing her head forward and backward and side to side.  It is so awful.

I've had to show some pictures of her to her nurses so they know what she really looks like.

The IV team just came in to start a new IV.  It took four of them to get it in.

Can you imagine how scary this is for her?  Four nurses in gowns and masks inflicting pain, and your mom sitting in the room, not stopping it.

In summary, this is what has happened today:

Had to start an IV.
Had to get labs, not utilizing the IV, so they had to poke her and take blood that way.
Had to get more labs, but from two different areas of her body.  So two more pokes.
Had to clean the pin sites.  Still need to do it one more time today.
Had to turn the screws, two times on each side.  One turn per side still to go tonight.
Got two x-rays.
Got an EKG.

If you only knew how hard she fights all of that stuff.  She is WIPED OUT.  This room is freezing and she's a sweaty mess.

I have to say that her nurse today was very apologetic to Harlie.  I could hear the compassion and sincerity in her voice as she told Harlie over and over again that she was sorry.  She said the night nurse was going to have to clean her pin sites - she just couldn't inflict any more pain on her.  I hear ya, sister!

Well, as you might be able to tell, I work on my blog post throughout the day.  So, things are constantly changing.

I just spoke to the doctor again (love him!) and he said her WBC went from 25 to 30, which is high.  They also did another test that tells them the cause is most likely bacterial versus viral.  And based on her most recent x-rays, they are suspecting that she has pneumonia.  They are having Infectious Disease (ID) consult to see if they can target the bacteria a little better so they can get the right antibiotics in her.

We have taken a few steps backward.  And there is definitely no more talk about going home.

Here are the meds she's on right now:

IV Gentamicin
IV Lasix
IV Clindamycin
Oxycodone
Advil
Ibuprofen
Aspirin
Enalapril
Miralax

We'll see what ID says tomorrow when they come to see her.

Tom should be finishing his 200 mile bike ride anytime now.  They started at 6am.  It is now 8pm.  I hate that he is doing something so difficult and I'm not there to support him.  He is always so supportive of me when I run races.

Well, I'm going to go now.  Thank you so much for all your incredible support.  All of your kind, heartfelt messages are really helping me get through this.  I knew this was going to be tough.  And it is.  And will continue to be for a while.  Please know how much I truly appreciate you taking the time to comment, text, email or call and say nice things to me.  I can't respond as much as I would like.  But, I am feeling the love.

Much love back,
Christy xoxo

Harlie's off the O2!

Lots to update...

First and foremost - Harlie is WELL again!  Woo Hoo!!  We went to see her pulmonologist on Thursday.  He said that her culture (that they took when she was in the ER last week) came back positive with pseudomonas.  They guessed that was the case, which is why they put her on the extra antibiotics.  So, at least the GI issues weren't for nothing.  Anyway, he said he didn't think it was pneumonia - he thought her low oxygen saturations were due to the mucus plugging that the pseudomonas caused.  Whoever read her x-rays that night in the ER might have only looked at the x-ray taken, without comparing it to her previous images they have in the computer.  I think due to her lobectomy, her right lung always looks a little hazy, which can be misread if you don't know Harlie's history.  Regardless, I'm so happy to say that she's off the supplemental oxygen and that she's her happy, spunky, energetic self again!

Harlie's next surgery (when am I going to stop saying that?!?!?) is February 12th.  It is her second stage of her BAHA placement (or whatever you call it).  The surgeon will place the abutement (the thing that holds her hearing aid on her head).  In the image below, the processor (hearing aid) is the black box to the left, the abutement is the round thing in the middle, and the titanium piece is already in her skull, under the skin.

The abutement is screwed into the titanium and the surgeon will destroy (?) the hair follicles around the area, so it stays clear and doesn't interfere with the BAHA.  After this surgery, we wait six weeks for it to heal before we can use it.  I can't wait!!!  She's been SO good with her soft band BAHA, so I can't even complain about that.  It's not a fight, she doesn't take it off, in fact, she asks for it.  But, it will be nice for her not to wear the head band anymore - fashion-wise, of course. ;-)

Anyway, I was a little worried that her lungs would need more time to heal before she could go under anesthesia (especially since we thought it was pneumonia).  So, I asked her doc about that when we were there on Thursday and he said she's good to go.  Woo Hoo!!

I have more surgery news to tell you about, but I'm going to have to save it for later... it's going to have to be it's own post and this one is already going to be too long.

So, back to Thursday again, I asked Harlie if she wanted to go back to school and she immediately, and excitedly said "yes."  So, Friday, she FINALLY returned to school.  Happy faces all around (especially MINE!).

And for her first day back in forever, she was fairly cooperative and willing to work.  Her teachers said she had a great day and they were all so happy to see her back.

Speaking of her teachers...

I cannot say enough good things about her team this year.  Seriously, I am SO incredibly grateful for all the educators that care about Harlie.  She is not an easy child to teach - and they all work so hard to find what works for her.

A few weeks ago, we had a meeting about her communication.  To try to summarize, we were trying to figure out what we wanted to focus on as far as how she communicates to us.  So far, we've really been accepting whatever way she wanted to communicate, whether it be sign, verbalizations, or her communication device (talker).  And, that just wasn't working.  The main problem is that her sign and verbalizations are just not able to keep up with her mind.  So, it's getting more difficult to test her or assess her at school, without her being able to communicate what she knows.  And that's clearly a problem - that will only get worse over time.

So, we all agreed that she CAN use the communication device.  It does take a lot of time, but she will get quicker and more efficient after lots of practice.  When it snowed, she used the device to say, "I want sled."  We haven't used the word "sled" in a long time.  So, either she remembered where it was from a long time ago, or she knew how to find it.  Either way, it proves that we need to commit to this device and really reinforce its use - all the time.  It's not easy, though.  Often times, we know what she wants without having to use it, but that will not help us down the road.  We have to teach her that using the device is the standard.  And she has a lot of people in her life.  And we all need to be on board.  And that's not so easy, either.

The person who got us the device (Rachel) a couple of years ago has been working on getting someone from the company who makes the device (Prentke Romich) to come to the school and do a training session.  That hasn't been easy, either.  So, she thought of another idea, and contacted a speech therapist within our county who knows Harlie's device really well, and knows how to program it.  And she was willing to come and show us a few things to make the device less intimidating and more usable for us.   Can you imagine having to organize all your vocabulary on paper?  How would you do it?

So, we had that training session today.  We spent two and a half hours going over stuff.  I know I've been saying "it's not easy" a lot, but, it's not easy to know where to add new words.  Tom took Harlie to the car wash this weekend and I wanted to add that button.  But where does it belong?  Under the washing category, the car category?  I ended up putting under cars.  But then Rachel suggested putting under "places."  Of course!!!  I forgot all about that category.  So, I need to change that.  And I need to spend more time studying the device myself, too.

It was a very beneficial session.  And I just cannot say enough great things about everyone that was in that room.  So many times I am reminded just how unique she is (like when someone asks a question about how to teach her something, and no one really knows the answer).  In a room full of special education teachers and/or therapists, that's a little scary.  So, this is not easy work for them.  But, despite that, they were all there, taking their valuable time to learn/teach something that will help Harlie communicate.  I want to hear what she has to say without me giving her the words.  They are helping her to get there.  What a gift!!!  How can I ever tell them how much their work means to me, to Harlie to our family?  We are so, so lucky to have them believe in Harlie and her potential.

It was also comforting to hear them say that this device is really only temporary.  And that she will be a reader and writer one day.  And when she can do that, she will type what she wants to say, which will be a different device.  Wow.  Crazy to think about that.  But, crazy good, I guess.  Well, aside from actually talking.  That would be my first choice.  But, I would totally take her typing away, like a typical teenager texting.

Another exciting development as far as her education goes is that I hired her teacher of the deaf from a couple of years ago to work with her privately.  She is the one that thought of the My Name is Harlie book and helped me write it.  She left the county and started her own company.  The best part is that she will come to our house once a week to work with Harlie.  And she already knows her current team, so they can communicate what they are working on in school so she can concentrate on that, too.  And she came to the meeting today, too, so she can incorporate the device into her sessions, too.  How awesome is that?  Just can't say it enough, I am so appreciative of all their hard work and dedication.

Okay, that's it for tonight.  I've already started working on my next post - which I'll hopefully have up tomorrow.

Thanks for reading!
~Christy xo

ER visit

Thursday

Harlie seemed totally fine (well, except for that little pesky O2 requirement), so off to school she went.  Seriously, I was thinking any minute now, she's not going to need it.  

After everyone was where they were supposed to be, I went to my Adrenaline class.  It was great.  Then I came home and sent some e-mails.  I e-mailed Harlie's pulmonologist.  I just wanted to let him know what was going on and get his opinion.  I really couldn't quite understand his response, to be honest.  I really like her pulm, he's great and very personable.  And when we see him in the clinic, he always explains things in a way that I can understand.  However, this is just one sentence from his response...

There could also be more shunting going on with blood bypassing the lung across her cardiac defect from more resistance to blood flow through the lungs by the edema.  

Got it?  

However, this I understood easily...

Lastly, she has almost half the lung reserve that she needs and the illness (and healing) will create more oxygen demand particularly with any exercise.

Because he mentioned "shunting" and "heart defect", I went on ahead and sent an e-mail to her local cardiologist (just to be on the safe side).  He mentioned pleural effusions asked if she's had a chest x-ray.  Um, no.  We were really trying to avoid that.  But, maybe we should consider that.  Tomorrow, of course.  

At some point during the day Terri sent me a text to tell me that she was up to two liters on her tank, to keep her sats in the 80s.  That's kinda high.  For Harlie, at least.  Especially on day three of ABs (antibiotics).  Hmmm...

When they got home from school Terri told me that the tank at school was pretty much empty.  

It was after 2pm now.  Considering she will most likely need more tanks for school on Friday, I needed to get on that and fast.  So, I immediately called our supply company and asked about getting more tanks.  This was a nightmare, but let me try to make it more simple for you...

We had one "E" tank - which is a larger tank that goes in a rolling cart (which was empty and still at school).  

We also had two "D" tanks - which are smaller tanks that go in a shoulder strap bag thing (one was almost empty and one was full).  

The E tank was staying at school and Terri was using the D tank to get her to and from school.  That way she didn't have to carry the bigger tank on the bus.  

Apparently, on two liters of O2, the E tank will last four hours, and the D tank will last two hours.  

So, we didn't have enough tanks to get us through the next day (Friday).  

The girl at the supply company told me they would only switch tanks out.  Meaning we had to give them an empty tank when they gave us a new tank.  But the empty one was at school.  So, logistically, how do I make that work?  

Well, I hate the small details of logistics.  So, right there my brain wanted to stop working.  But, don't most people own two propane tanks for a grill?  So when one goes empty, you switch it out for a new one then you have time to exchange the empty for a new one, right? So, how the heck am I supposed to switch out one E tank?  It seemed to me that I needed at least one more E tank.  

Plus, I needed the E tank that day so I could take it to school on Friday.  

After 45 minutes, and three people later (the second person finally transferred me to a respiratory therapist who was a bit more reasonable and understanding of the situation) I finally got an order for two more E tanks in exchange for one D tank.  That left me with two full E tanks, one empty E tank, and one full D tank.  And they delivered them that afternoon.  

Terri stayed late for me that afternoon because I was on the phone so long.  And during that 45 minutes, Murphy got home from school and wanted to talk to me about his day (which is very rare).  But, there was no way I could talk to him right then.  So, I had to shoo him away to take care of this stuff for Harlie.  Ugh.  Stuff like that just makes me feel terrible.  I know there's no way around it sometimes, but that doesn't make me feel any better.

Friday

Harlie went to school on the bus with Terri with a D tank.  We got Murphy off to school and Tom left a little early that morning.  I got Cooper ready and took him to school at 8:30.  I left there and went to Harlie's school to deliver one of the new E tanks that was delivered the afternoon before.  

I must say that it felt super weird to be carrying in an oxygen tank to school.  When you push the buzzer to get in the school, they now ask how they can help you.  So, I said, "I'm Harlie's mom delivering oxygen."  I'd rather be delivering cookies.  

So, we switched out the E tanks.  And when we opened the new tank - it's not full.  Seriously?  Ugh.  That's when I wonder why I didn't think about the supply company delivering the tanks to school instead of to my house.  Wouldn't that be way easier?

I tell Terri to call me when it starts to get a little low and I will have to come back and pick them up.  Because I just love driving back and forth to her school.  

I left there and went to the gym.  I signed up for the 9:30 TRX class and got the last spot.  On my way there, I called her pediatrician.  I asked if her current ABs treat pleural effusions.  She said she'd call me back.  

Just as the class was starting, my phone rings.  The nurse said that her doc wants her to have chest x-rays.  I can't believe my denial, but I actually asked if I needed to do it now or if I could wait till after school.  She paused and fumbled over her words a bit (probably because she was shocked that I would ask such a ridiculous question).  I said, "Never mind, of course I should take her now."  And hung up.  

Then I went and did the TRX class.  It was hard - not just the work of the class (because TRX is really hard) but my head wasn't all together for a little while.  But, I felt a lot better after.  Then I ran a quick mile on the treadmill and I felt much better.  

Then I went home to eat breakfast and shower.  Because I'm sorry, but I am NOT going to the hospital looking all a shambles in my work out clothes.  No way.  I can't help but think if I look somewhat put together, then I will be taken more seriously.  

I also called our supply company.  For one, I wanted to ask them about getting a portable oxygen concentrator so we wouldn't have to worry about tanks.  Because they are proving to be a royal PIA.  I got a "no."  But, if this turns out to be a chronic problem, I'll work on that.  I also asked her about delivering to school.  She said they don't like to do that because they are afraid they (the tanks) will get lost.  Seems like an easy problem to overcome considering Harlie is the only child in the school with oxygen tanks.  But, that will have to be a fight for another day.  I got other things to deal with right now.  So, then I ask about delivering tanks during the weekend.  She answered, "Only if it's an emergency."  I replied, "but... it's oxygen."  

Am I missing something?  Isn't needing oxygen, kind of important?  Whatever.  Moving on... I ordered more tanks and asked that they be delivered as late as possible in the day.  Because I didn't know when I'd be home.  But, I did think ahead a bit, and brought in the empty tank that I picked up from school earlier in the morning.  

Unfortunately, it's now close to noon.  My, how times flies!  

I realize that I don't know where to take her for the x-rays.  I mean, I know where it is, but I don't know if her doc has to call ahead and order it.  I can't just walk in there and ask for an x-ray.  So, I called her doc again.  I get the receptionist who tells me that they are all busy and they are going to have to call me back.  I can tell she doesn't know how I am or why I'm calling.  And they close the office at noon for their lunch hour.  So, I really need to talk to someone before noon.  

I wait till just a few minutes before, and call again.  Her doc gets on the phone and tells me to go to the ER.  

Well, now I have to feed and walk the dog.  

Then it dawned on me that I have to have the boys taken care of because I have no idea how long I'm going to be gone.  So, I had to make some phone calls.  Of course my friend Bethany (who's got my back - thank you very much!) comes to my rescue and picks up Cooper and keeps him for the day.  I was going to ease her burden by sending Murphy to another neighbor.  But I couldn't reach her.  So, I had to call Bethany again, and ask her if Murphy could ride his bike to her house after school.  Of course!  So, I had to send an e-mail to his teacher asking her to tell Murphy to go to her house instead of coming home.  

I also called my niece Maggie, who said she could come over around 3pm to relieve Bethany of the boys.  Maggie said she could stay until 5pm (then she had to go to work).  Then Tom would come home.  My mom has the flu, otherwise I would have just had her come over.  

Okay, so I got home from the gym at 10:45.  By the time I did all that stuff, it was a little after 1pm.  Now I realize that I have to pick up Harlie and Terri, and then bring Terri back to my house because she needs to get her car.  There's no way she can go to the hospital with me.  Who knows how long I'd be?  

So, I finally got to the ER at 2pm.  OMG.  I had no idea it was going to take that long to do all that stuff.  

The ER is packed and with Harlie's chair and all her stuff, we were kind of a wide load.  There was no seating for the both of us.  So, I stood up most of the time.  I can't remember how long we had to wait, but it was a good long while.  I've never had to wait at the ER with her.  Ever.  And I had to ask them for an O2 tank, because there was no way my small D tank was going to last us through all this waiting, and then to get us back home.  

I got to see a friendly, familiar face - a nurse that we met through the Steelers club.  We've seen her many times in the ER.  So, that was nice.  

Once we got back into a room, things went pretty quickly, all things considered.  We saw two doctors that have both seen Harlie before.  Went over everything and got chest x-rays.  

She was very playful (and didn't look very sick).  

But then a nurse came in to start an IV (they wanted some blood work and wanted a line for IV ABs, if necessary).  Harlie immediately started to cry.  Break. My. Heart.  I tried to prepare the nurse for the fight Harlie was going to put up.  I told her that nothing I do or say helps Harlie.  I sat down on the bed and put Harlie in my lap.  Then I bear hugged her the best I could.  I should have told the nurse to get some help.  But, I just wasn't thinking, I guess.  

Thank God this lady knew what she was doing.  She got it on the first try!  And that's saying something when you factor in how much Harlie fights and moves.  But, once she got it in, Harlie still wouldn't stop moving.  And by now we are laying in a very awkward, uncomfortable position.  Harlie is purple from all the crying and fighting, her oxygen tubing came disconnected, the alarms are buzzing and her sats are in the tank.  The nurse doesn't want to loose this IV, so she calls for help.

Whew!  After a few more minutes, they were done, and we could leave her alone for a bit.  She was wiped out after that!  

Then the doc came in to tell me that her x-rays showed some pneumonia and/or atelectasis (collapsed lung) on the right side.  They want her to stay on the ABs she's already on, but they want to add a med.  They said the med can be hard to find, so they were going to give her first dose while we were there, through her IV.  

They started that at 7pm and said it takes an hour to run.  Thank goodness I remembered to throw some granola bars and an apple in my bag!  The last time I ate was breakfast.  So, I was hungry.  

I was also really, really tired.  And even though I've done it so many times before, the thought of packing her up, carrying all the bags and stuff and getting her to the car, and home, made me exhausted.  It felt like the car was miles away.  

So, I called my sister, Sandy.  I knew my niece, Jordan, was still home from college, so I was hoping they could help me.  I felt so wimpy asking for such a crazy thing.  But I really couldn't help it.  

I asked her if there was any way they could work out going to my house, leaving someone there to watch the boys and then have someone bring Tom to the hospital, so he could drive us home.  

How awesome is it that they were Johnny on the spot?  Sandy and Jordan were already together and out.  So they left there and drove straight to my house.  Sandy called her husband, Rick, and asked him to leave their house and drive to my house.  Jordan stayed  with the boys and Sandy and Rick drove Tom to MCV.  He got there right as we were getting the paperwork done for discharge.  

Awesome!  Thank you so much Sandy, Jordan and Rick!!!  

We left the hospital and went to the 24-hour CVS to get her prescription filled.  No luck.  They were out of it.  They called another pharmacy (the one that usually has everything but isn't so conveniently located) and they were out, too.  Tom called another one, still no luck.  They could order it, but it wouldn't get here until Monday.  So, we went home.  

I guess we got home close to 10pm.  Tom called the ER doc and told her about the meds.  She said she'd do some research and get back to us.  

We went to bed.  And the doc called us back Saturday morning.  

But, I'm going to have to stop there.  I still have more I want to tell you about, but it is super late and I'm running in the morning.  So, I need to get to sleep. 

More soon!
Thanks,
Christy xo 

It's always something...

Harlie is still sick.  Here's what's happened since my last update about her...

You might remember that I took Harlie to the ER for chest x-rays last Thursday.  We definitely caught her pneumonia early (thank you Jennifer!).  Because by Friday night, her lungs sounded worse and her sats (measurement of oxygen in the blood) were low.  She's always had low sats (thanks to her heart defects) but in recent months I noticed a big improvement.  She seemed to be hanging out in the high 80's - low 90's (which is fabulous for her!).  But, when I put the pulse ox on her at bedtime on Friday night, her sats were in the low 70's!  That's a big difference!

So, I hooked up all her equipment and oxygen and we went back to the trach collar for a few nights.  I had to put her oxygen concentrator on 3 liters to keep her in the 80's.  Geez.  She must have been feeling really crappy!

She laid around watching movies for a few days.  And we had to go back to all tube feedings.

By Sunday, she was on day three of her second antibiotic and she was acting much more like herself.  She was playing - and not watching TV.  Awesome!

What a big difference from our past experiences with pneumonia (which resulted in a hospital admission).  You can tell she's getting bigger, including her good lung tissue, and stronger.  It's really an awesome feeling to know she can fight off something like pneumonia with no hospitalizations!

So, off to school she went on Monday.  It was more difficult to wake her Monday morning than usual.  But, she's been laying around and we were off schedule, so I didn't think much of it.

But, around 11am, I got a text from Terri (her nurse) telling me that Harlie started vomiting in the cafeteria during lunch.  And she said that prior to that, Harlie refused to eat anything by mouth.

Let me pause for a sec to say that everything we do to make her seem more "normal" - was totally negated that day.  It can be pretty unsettling to watch her vomit - especially for kids.  While she's throwing up, she's also producing secretions from her trach that have to be suctioned.  So, you need to catch the stuff coming out of her mouth with something, while also using both hands to suction.  It's not as easy as it sounds!  Terri said it was so bad that someone had to go get a trash can.  Nice.

So, off to the clinic they went to let her lay down while they waited for me to come get her.

She really was FINE on Sunday!  I swear!

So, I cancelled her private speech therapy for that day (she has now not been able to go to this therapist since January 9th!) and on our way home, stopped to pick Cooper up from preschool.  She wouldn't walk - so I carried her.  While we waited in the hallway with all the other moms, Harlie passed gas.  And OMG.  My only hope is that since the hallway was crowded, no one would know where it came from.  And if they suspected it was from my general area, I'm really hoping they would blame the child.  I just wanted to grab Cooper and run.  I already feel like an outsider there!  Stinking up the joint isn't helping!

So, we get home.  Thankfully.  Because then Harlie had the worst, worst, worst diarrhea I've ever seen.

She's really going to kill me when she reads this one day.  I'm sorry Harlie!  I love you.  But I have to write about my traumatic experiences to stay mentally healthy.  

Poor, poor Harlie!  First pneumonia and now some stomach/GI bug?  What gives?!?  And how in the world did she catch the stomach bug?  The clinic attendant told me that the stomach bug has been going around her school.  But she hadn't been there since Thursday!

She pointed to her stomach and made a really sad face.  I asked her if it hurt and she said, "yeah."  Then, just to be sure, I asked her if she was hungry.  She said, "No!"  Got it.  So then I showed her how to tell me that her stomach hurts on her communication device.  Just so she can be really clear in the future.

She laid around again, watching movies.  And making lots of trips to the potty.  We went back to pull-ups.  Again.  I will say this - she sure is a flexible girl.  I know plenty of kids her age that would NOT want to wear a pull-up.  But, she doesn't care.  Or she realizes that's better than the alternative.  Either way, I'm glad.

Later on that night I wanted to give her just a little food.  She hadn't had anything but Pedialyte since before 11am.  Harlie was walking into the kitchen and when I walked toward her with the can of formula and  feeding tube in my hands, she turned around and took off "running" and jumped into the beanbag chair face-down, in the fetal position.

I guess that means your stomach still hurts?

I gave in.  I didn't give her any food.

Today is Wednesday and she's still home.  Living off Pedialyte.  I tried to feed her some real food today. But, she really fought me.  I only got a few bites of oatmeal and peaches in her.  I really want to trust her and let her make this decision.  But after years of fighting oral feedings, it's difficult to do that.  She's been so good with her oral feedings these past few months that I am trying to listen to her more.  I really think that will be better in the long run.

So, I tubed her a few ounces a little while later.  She refused that, too, by covering up her g-tube with her hand.  But, I was able to talk her into it.

So, we'll just see how she does with that.  I don't know what to do about when to send her back to school.  I'm afraid to push her too much.  I guess I'll wait until she starts eating some normal meals (whether it's by mouth, or tube) and staying symptom-free (of course!).  So, maybe I'll send her back on Friday.

At this point, she's already missed 14 days of school and left early several others!

Oh, and I caught a bad cold or something.  It started for me Wednesday night.  I don't know if I was just overly tired at the same time or what - but it really knocked me down.  I was registered to run the Frostbite 15k on Sunday, but there was no way that was going to happen.  I didn't want to walk into the other room, much less run 9 miles.

Tom made some homemade chicken noodle soup for me and luckily my nurses pitched in so I could get some rest.  It was convenient that both Harlie and I were sick at the same time.  Not.

Today I feel the best I've felt in days, so I'm happy about that.

So, that's it for this post.  I've been meaning to post these photos of Harlie for MONTHS (like five!), but keep forgetting.  So, I'm going to post them now.  Just because I think they are really funny.

Even though this one is out of focus, I love it.

Ahhh, it's the little things...

More later!
Thanks!
~Christy

No Sleep Study!

Harlie has pneumonia.  So, no more waffling about the sleep study scheduled for tonight.  My Mom came over yesterday to watch the boys so I could take Harlie to the ER and she called and cancelled our appointment for me.  I'll call to reschedule later.  It's really so typical.  And I didn't want to go anyway.  ;-)

Yesterday at school Harlie was really tired.  And if you know her at all - you know she's NEVER tired.  Like sleepy tired, I mean.  She might tire from running around and need a little break.  But, she hasn't napped in YEARS.

Terri (her nurse) said that she had to carry her to class.  I dropped her off and I just thought Terri carried her to the sidewalk.  Terri has to carry a lot of stuff.  She's in school herself, so she has her own backpack with her school work, and then she has the suction machine (which is over 5 pounds), Harlie's backpack (which she's not allowed to carry herself because of her spinal fusion) and Harlie's lunchbox.  To carry Harlie (who weighs 34 pounds) in addition to all that stuff is HARD.

She barely made it through circle time with her general ed class, but she participated more in her hearing impaired class.  Then when they went outside for recess, she laid down on the bench.  So, Terri took her inside her classroom to lay down.  Her teacher asked Harlie if she wanted Buster Bear.  NOOOO!!!!!  No more Buster, please!

Harlie said no.  Smart girl.

When her classmates came back in from recess, they went to art class.  Harlie fell asleep in there, too.  So, Terri called me and told me what was going on.  By then she had taken her into the clinic.  She slept in there until I came to get her.  I carried her to the car and brought her home.  I've been meeting Terri at school lately, so she doesn't come home with us (since her car is there).

She was on Day 7 of an antibiotic and she was getting worse.  I haven't seen her this lethargic in a long time.  So, I called Jennifer (another one of our nurses) and asked her about her symptoms.  She stopped by and listened to her lungs.  She listened for a long time and said she thought she had pneumonia.  She said she could hear fluid in her left lung.

So, I called her pediatrician and told him that.  He said to go to MCV's ER for x-rays.  So, I called my Mom and she came over to watch the boys so I could take Harlie.  When I got Harlie up from the couch to put her in the car - I had to carry her like a baby.  She did not even want to sit up to sit on my hip!

We got there and the doctor listened to her for like 30 seconds.  He said, "She sounds clear, but we can get a chest x-ray just to rule it out."  Of course I had to explain her lack of a fever.  Because that's always the first question I get asked - does she have a fever?  Well, no.  But, she never gets them, so please don't let that affect your judgment.

So, hours later, x-rays were taken and read.  Pneumonia in both lungs.   So, kudos to Jennifer to being able to hear what the doctor didn't!

They gave her a dose of Lasix to help her get rid of some of the fluid.  And they put her on a different antibiotic and gave her a dose of that, too.  Then they let us go home.  It was about 10pm by then.  She kept signing "car."  She was ready to go!  And when we left, she had a spring in her step and a big smile on her face.  I would give anything to know what she was thinking.  If only we could have a conversation...

Which reminds me...

At one point the doctor came in and asked me if it was okay if a med student came in to see Harlie because she had never seen someone with Goldenhar Syndrome.  I said sure.  But, it was a little weird to hear him talking to her and pointing out some differences in Harlie's face.  I'm starting to wonder what Harlie understands and thinks when she hears people talking about her, or her peers asking questions about her.  So, again, if only we could have a conversation.

Anyway, she's happier today.

She's home, of course.  And not complaining or whining or asking for anything (other than movies).  She's such a good kid.  Really.  She cooperated with everything and everyone at the hospital.  And she couldn't be any cuter when she gets x-rays.  She follows the instructions and holds really still.  She's something.

Well, that's it for now.  More later!

Thanks!
~Christy

Thanksgiving Day

I hope you all had a Happy Thanksgiving. It is so hard to believe that it is already over.

We ended up having an eventful day. Harlie had a terrible Wednesday night. Her oxygen saturation levels were so low. They are normally low anyway (around 75-85 - normal sats for a healthy person is close to 100). But I had to turn the oxygen concentrator up to 4 liters of oxygen to keep her above 70! That is a BAD sign. I had to suction her all through the night. And she was working very hard to breathe - while sleeping. I knew what all that meant.

I had to take her to the ER.

It certainly wasn't worth waiting till Friday to get her some help. And I knew that if I did that, her pediatrician would send me to the ER for x-rays anyway, so why wait? I figured the ER had to be pretty slow on Thanksgiving Day. Plus, with her jaw reconstruction looming ahead (now less than 2 weeks away!!!) the sooner she gets meds, the better. Plus, she was acting miserable. She had coughed up so much gunk during the night that it was all in her hair - and she had thrown up and that was in her hair, too (it's so great to be us) so I had to put her in the tub. She normally loves her bath. But, when I put her in, all she did was sit there and cry these big silent tears. It was so sad.

So, we went and they took x-rays and they said that she had pneumonia in her lower left lung. That's a new location for her. The past two times she's had pneumonia it was in her right lobe. Which they say could be caused by aspiration. Which terrifies me. That is a problem I REALLY don't want her to have.

Anyway, they put her on some more nebulizer meds, which she gets four times per day (she normally gets two meds twice a day), plus antibiotics and some Tamiflu, just to be on the safe side. And we were home in time for Thanksgiving dinner. My whole family came over - which totals 20 people. It was crazy. But good. I was so glad they let me take her home so we could all be together.

And she is so much better already. I was able to turn the concentrator back down to 1 liter last night and no suctioning during the night! YAY! So, hopefully she'll be fine from here on out.

Her jaw reconstruction is Wednesday, December 9th. Yikes. It is SO close now. And there is so much to do! We definitely have to take the kids to see Santa before then. There is NO way I can take her after her surgery - that would be terrible! She will look terrible for two weeks!

I know I should have focused on what I am thankful for for Thanksgiving. But, I just didn't have that kind of focus. And honestly, I am thankful EVERY SINGLE DAY for so many things. A day doesn't go by that I don't think of how blessed we are in so many ways. Of course there are days when I feel like if it weren't for bad luck, we'd have no luck at all. But in the end, I know we are lucky. Having Harlie has changed the way I think. I will never take talking, breathing or eating for granted again.

Pulmonary Appointment

Today was the Carytown 10k. The temperature was good for running (60 degrees), but it was raining. That light misty kind of rain. In the materials, the course was described as "flat." Rubbish!

It was definitely NOT flat! And considering I had not been training for a 10k - a hilly 10k at that - I think I did alright. My last 10k time in March was 58 minutes, 18 seconds (an overall pace of 9:22 per mile). I did this 10k in 58 minutes and 45 seconds (an overall pace of 9:29 per mile). All in all, not too bad.

Anyway, to catch you up on last week's events...

Last Monday was Harlie's pulmonary appointment. It was a long one, but worth it. When we got into an exam room a man came in that we didn't know. He was there to do some carbon dioxide exhale test or something. Anyway, he knocked on the door and came in and Harlie walked right up to him and held out her right hand - for him to shake it!!!! Like a grown-up! It was the cutest thing ever! He was so surprised and shook her hand and said that she was the most polite 2-year old he'd ever met. It was hilarious.

Anyway, I went over everything with her doctor and his theory for the repeated pneumonia was something about bacteria that lives on her trach getting into her lungs. He took some secretions to culture and said that he wanted to see what bacteria was growing so he could prescribe an antibiotic to put her on - just in case - up until her surgery. He called on Friday to say that he was prescribing a med to be given through her nebulizer. The pharmacy had to special order it, so it will be here tomorrow. Unfortunately, her neb treatments (she gets two meds already, twice per day) take forever. Now I'll have to give her the two that she normally gets, then after that's done, I'll have to give her the new one.

He also wanted x-rays to compare to her last ones. So, that took forever. We knew the x-ray tech that took her films. Now that's just sad.

Her films looked great. So, he thinks she's healed well from her last pneumonia. Hopefully another three weeks and the neb meds will help keep her that way.

Now it's time to rest my weary legs.

Goodnight!

We have a new date.

Okay, so we're going to try this again. Our next scheduled attempt at the Fontan is Monday, June 8th.

Hopefully that will give her plenty of time for her lungs to recover and be strong for the surgery. She is supposed to see her pulmonologist (DC docs want her to be seen within one week of her discharge, on Tuesday). I called on Wednesday and was told that the next available date was in JULY!!! Can you believe that? I can't begin to tell you how angry that makes me. 

The kids that see a pediatric pulmonologist have issues with their.... lungs. Just their lungs. Eh, no big deal. Seriously? They can't organize their practice to see sick kids???? Granted, there are very few pediatric pulm docs in the area. It's really quite sad. Of course you wouldn't know that until your kid needed to see one. And most people don't need that kind of service. But, what gets me is that clearly there is a need. If you're schedule is booked until July, and you're not leaving any room for sick kids, follow-ups after hospital discharges, etc., then we need more docs.

Just starts me on my rampage of how inadequate the health care is here in Richmond. Most locals think we have a children's hospital here. But we don't. What is called "Children's Hospital" is a long-term care facility and therapy service. Your kid wouldn't be rushed there after an accident.  

And need I explain how good it would be for our economy to have a full-service children's hospital?  All those jobs, all those people needing a home to live in, places to shop.  

Anyway, I took Harlie to see her pediatrician yesterday and I talked to him about my inability to get her in to see her pulm.  He said he would make a phone call for me.  It's just so frustrating.  Harlie's gotten pneumonia twice in a matter of weeks, and she has to have major open heart surgery - which greatly involves her lungs - and she has less than the average person (3 lobes compared to 5).  If she were to get pneumonia while recovering from the Fontan, it could be life-threatening.  And her pulm can't work her in?  Are you kidding me???  

I just need to know before going in that were not dealing with a bigger issue involving her lungs.  And I can't take any advice from her cardiologists about her lungs.  Just as I can't take any heart advice from her pulmonologist.  So, I really need her pulm's blessing before her surgery.  

Hopefully, her pediatrician can get her in.  I suppose I could take her elsewhere - like DC - I'm sure they could work her in.  But, they don't know her history.  I mean, I could tell them and bring them up to speed, of course.  But her pulm here knows her.  He saw her during her 8 week recovery at MCV after the Glenn and he's seen her ever since.  And he knows me.  And sometimes I think that's just as important.  

That's it for today's vent.  Be sure to tune in tomorrow!

Pneumonia

Well, the official word is that it is pneumonia. It's a little scary that it is in the same place, her right lobe, as before. They say it is a concern that it could be due to aspirations, which would be terrible, and wouldn't make much sense. She's never had an issue with aspirations before, so I don't know why it would happen now, especially with no changes that would cause it. So, the theory is that maybe we didn't give her long enough to heal from the last pneumonia before putting her through another cath, then another cath - all within several weeks.

When we get home I need to get her in to see her pulmonologist. I want to make sure that we give her plenty of time to get over this before doing the surgery. We might even consider waiting till June. The only negative would be that it would probably start a domino effect - moving the rest of her surgeries back, as well.

I am very thankful that it presented when it did, versus several days later. If she had the Fontan, and then the pneumonia happened, it could have been disastrous. It's during times like these that I believe she is really meant to be here. She has racked up quite a list of things that could have easily gone the other way (the way we don't want to go) yet, she has survived everything.

So I'm not rushing her out of here. I think the more IV meds she gets, the better she'll be in the long run. They said that she has to go 24 hours with no fever before they will send us home. She had a fever Sunday night at 6pm. They gave her Tylenol and she went without a fever til 12:30pm today. 18 hours. So close! Hopefully a few more doses of the IV meds will do the trick. I do know that she's starting to feel better. She finally started waving Hi and Bye to people today. And blowing kisses.

I gave her a little shower with the hand held thing tonight. While I was doing that her nurses changed her bed sheets. I guess everything made her feel good, because she perked right up and really fought going to sleep. She's definitely coughing a little less. Last night she woke me up at least once an hour, sometimes more. I'm really hoping that tonight is better.

I'll have more tomorrow. Thanks for all your support!!!
Christy

In the hospital now.

Well, there was no improvement with Harlie. In fact, she appeared to be getting worse. So, I took her back in to see her pediatrician this morning. After this long with no improvement, we needed some answers! He agreed that she looked worse and her breathing was definitely more labored. So, he sent us the ER. They took some blood, and secretions, ran some cultures, and took some x-rays. Her white blood count was 22 (which evidently is pretty high - although not as high as it has been in the past). And the initial verdict is... (drum roll please) pneumonia! The radiologist said that it is in her right lobe (she only has 1 instead of the normal 3 on that side). So, no wonder why she's needed the extra oxygen!!!

Honestly, I am pretty happy that we have a source of infection - an answer - and that it is a treatable condition. She's already on 2 IV meds and has received them every 6 hours, so hopefully she'll start to feel better soon. They told me that she'll have to be here for at least the next 2-3 days depending on the cultures. Hopefully, they will be negative for everything else.

When we got to the ER, my 2 favorite nurses (one is a fellow Steeler fan that we know from the club) were working, which was awesome. They took very good care of Harlie and got everything they needed on the first try! And that's really something considering that hardly ever happens when Harlie needs an IV. That is usually a truly horrific experience (for all parties). Then, we got admitted upstairs to the Progressive Care Unit (the one that the beds are separated by curtains) where we got the same nurse from last time. And then a respiratory therapist that we knew very well from when Harlie was a baby came in to get her humidified air all hooked up. And then, the night nurse is a past nurse of ours, too. So, really, today felt more like a reunion. It's really quite scary how well I know this place and the employees (even the security guard on the 7th floor)!! But, it really does make our stay so much more tolerable. And I am thankful for that.

The cardiologist that saw Harlie last Tuesday when we went for the heart cath (which she didn't get - back when all this began) came to visit. He said that if she tests positive for RSV, they won't do heart surgery until 8 weeks after she's recovered! So, I am crossing everything I've got that the RSV test comes back negative (although I'm not really worried about that). We should know tomorrow. And he said that the doctor that does her caths (he is out of the country until next week) will have to decide if he will still do her cath as scheduled (on the 31st) or if he'll want her to have more recovery time. Ugh. So, it's possible that everything could be postponed again. But I have to admit, it's an easier pill to swallow this time - now that I know what she has and that I can finally see an end to her sickness. WooHoo to that! I will be so glad to get my happy little girl back!

I'll have more tomorrow...
~Christy