Home and life moves on...

Hi. Well, we made it home on Saturday, May 9th (my Mom's birthday). It was a long day. We took an Uber to the airport. When we landed at Reagan, we had to take the shuttle to the rental car place. Then we had to wait there for a while. Then we finally got the car and drove home. I think we got home around 7:30pm. I think it, I say it - every time - but I cannot imagine how hard all that travel is on her after all she's been through. 

The next day was Mother's Day. It was a beautiful day. But, we were just too tired to enjoy it. We did sit outside for a while, which was nice. Harlie didn't come downstairs at all. So, as far as doing something "special" well, that was just out of the question. We needed to catch our breath. To be honest, it was a difficult day. Not only did we just get through a grueling week, with another grueling week of recovery ahead, it was my first Mother's Day without my Mom. It was weird. With all my feelings, I just didn't have it in me to do much wishing other moms a Happy Mother's Day. I stayed off my phone and just rested as much as I could. We had dinner with the boys, Tom made crab cakes, which I requested. The boys gave me nice cards and wonderful gifts. They are so thoughtful and sweet. 

Monday was Murphy's 22nd birthday. He didn't have to work at all, which was nice because that meant I got to spend almost the entire day with him. He asked me to help him work on going through stuff in his room and packing. I also wanted to get him new bedding, so we went to Target and he picked out all new stuff for his bed. He tells me he is going to make his bed every day when he gets into his apartment. Haha! We'll see. We gave him stuff for his apartment, like a set of pots and pans and a cast iron pan that he wanted. He bought a kitchen island off Facebook marketplace and Tom fixed it all up for him and painted it. He's in pretty good shape, really.

Harlie's Electrophysiologist (EP/pacemaker doc) moved us to 9am on Tuesday in Fredricksburg so we could get out of there in time to go to Murphy's graduation. 

As far as how it went... it went as most EP appointments go - they essentially say the same thing - the leads are tricky, but they still work. She's stable for now. Honestly, they do an awful lot of fiddling around with her device for me to believe that she's "stable". From my perspective, it seems like they are putting in a lot of effort to turn around and say she's stable. The EP put a Holter Monitor on her for the next 24-48 hours so they can see if they can get more data. She said that she really can't tell me if she'll need a replacement in the next six months or in the next two years. They just have to watch her closely. It's kind of frustrating. No, I don't want to rush into any surgery - especially right now. But, at the same time, I don't want us to end up forced into a surgery with no time to prepare. Or worse - have a catastrophic failure that ends horribly. Or, everything will be fine for the next two years. Seriously? How are parents supposed to live like this?!?!?

I told her that Harlie has camp in Indiana next month. Are we risking too much by sending her? I don't want to live in fear and have her miss out on valuable experiences (this is the last year she can go to camp since she will be 20 in September). But, I also don't want to be negligent and dangerous. We have an anniversary trip to Spain planned for the end of August/beginning of September. Should we not go? What if we go and something happens? She said she wants us seen by EP again on June 4th (her EP doc comes to Richmond on the first Thursday of every month). We'll have that conversation then. Hopefully they will have the results of the Holter monitor by then. As far as our anniversary trip, she said don't cancel anything yet. 

I just hate living like this. When I started to tell her doctor about camp and our trip, I started to cry. I HATE it when I do that. Amazingly, there's only been a handful of appointments when I've cried. On one hand, I feel weak/out of control when I do that. But if you think about how many more appointments when I HAVEN'T cried - I'm like, hey, look at you! Haha! 

The bottom line is that life is kicking our asses right now. Normally I can keep myself somewhat contained. But, I just don't have the energy required to keep all my feelings contained, so my feelings are spilling out all over the place. This makes me want to go home and not leave and not see anyone. 

Anyway, we left there and headed back to Richmond. It was a quick turnaround since Murphy had to be down at the Siegel Center by 1:15pm. Caylee came over to hang with Harlie while we were gone. Of course, Harlie wasn't feeling up to going. She missed Murphy's high school graduation because she was in the hospital. Now she missed this one. Ugh. 

There were about 800 students participating in the graduation ceremony. I assumed the students were in alphabetical order, so when the students first entered and filed into their seats, I wasn't really looking for him. I just figured he would be in the middle of pack. But, something made me look up at the jumbo tron thing and as soon as I did, there he was! It was like intuition. He was in the second row, and we watched him walk in. It was like he could feel us because he looked right up at us and waved. That is so crazy because the place was packed and we had no idea what the set up was or where we would be. I thought there was no way he was going to see us. Crazy! It's like he could feel our love, haha!

I mean, just look at how cute he is!! 😍 Haha! 

I forgot to mention that on Monday, I started to feel sick - like a cold sick. When we sat down, I realized I forgot to grab some tissues. So, Cooper went to the restroom and grabbed me a handful of toilet paper. Classy. Anyway, after seeing Murphy's cute face, I just started to cry. Ugh - there goes my feelings spilling out all over the place again. I mean, I wanted to excuse myself and go sob somewhere private. But, clearly that wasn't an option. I had to get myself together. 

The President of the community college spoke and I really liked what she said. She said she gets asked about the type of student that attends the community college. She said that they are extraordinary. To prove her point, she asked the graduates to stand if they are the first to earn a degree in their family. Then she asked the graduates to stand if they are a parent or the primary caregiver. Then she asked the graduates to stand if they had a full-time job while they were in school. Then she asked the graduates to stand if they were getting their Associates Degree before they graduated high school (there is a program where you can earn your associates in high school). By then it looked like every graduate was standing. It was pretty cool. She also said that the youngest graduate is 17 and the oldest is 72. Pretty awesome. 

Ahh, you gotta love that sibling support. Cooper was just "resting his eyes". 

He chose to go eat at Stella's to celebrate (that is the restaurant where he works). I just love going there because I get to hear so many good things about Murphy. So many people come up to us and tell us how much they love him. It fills my heart and I really needed it right then. 

A candle for his birthday...

Just because I can... here is an old post where I shared some good, young pics of Murphy on his 7th birthday. 

Later that night, I took a down turn and really started to feel bad. I had a terrible night and woke up feeling even worse. This has happened before after a hospitalization. I just get so run down. It is my body's way of telling me to chill out and recover. As if I have any control over that. Trust me, I want to chill out. I love to chill out. I wish I could chill out.

Speaking of not being able to chill out... I received a reminder for her next bronch (a follow up from her last bronch in February). It is scheduled for May 27. I just can't do it. I'm going to have to reschedule. But for when? Camp is June 14. I don't know how or where I'm going to fit it in (maybe after camp if the doc thinks it can wait that long). I just can't do it so soon. She has five doctor's appointments on her calendar before June 12th. That is ridiculous. 

Today is Wednesday and I convinced Harlie to come sit outside with me. 

I don't know when she will return to school. Definitely not this week. 

The next hurdle we have is to help Murphy move into his apartment on Friday. So, we have two more nights of him sleeping in his bed in our house. I know, I know, this is great. It is! I have full confidence in his ability to navigate life. I am so proud of him. But, oh, I am going to miss him so much! Feelings aren't either/or. You can have lots of feelings at the same time - like I am both happy and sad about him moving out. Like I said, we are getting our asses kicked right now. I wish so many life changing things didn't happen in such a short time, but sometimes that is just the way it is. 

Well, I didn't get this finished and out on Wednesday. So, now it is Thursday. Harlie has not come downstairs today. But, I have been able to remove the dressing and not put a new one on. I'm just leaving it exposed to the air now. Tomorrow we will remove the sutures. Hopefully that goes well. I also removed her Holter Monitor and put that in the mailbox to be returned. 

That's it for now. Thanks for reading!

Much love,

Christy xo

Pacemaker appointment

Harlie's pacemaker appointment was yesterday in Fairfax.  I told her that they were just going to look at her - no hurt.  Well, they did an EKG (which she HATES because of the stickers).  Here's a photo of her getting an EKG from her pre-op day before pacemaker surgery...

Anyway, she looked similar to that yesterday.  Just not as calm.

When they program her pacemaker, we have to hold this magnet thing over her belly.  The magnet thing is attached to the machine and info is transmitted through the two.  She sat in my lap and I held the magnet thing up to her belly while she watched Rio on the iPad.  She was able to watch the whole movie while there.

I know there are worse things, but it isn't easy to sit there and listen to how difficult it is to pace her heart.  They would set it on some setting and then watch to see what her heart did.  Then I would hear them say, "Well, that puts her in wenckebach."  Or it would be some other negative reaction, that does this, this does that, etc.  For more than an hour.

At one point I was reassured that even though it is difficult to pace her now, they will eventually get it right for her heart.  And I want to believe her.  I do.  But there's a part of me that wonders what this means in the long term.  And to be honest, I just don't like to be reminded how complicated her heart is.  They asked me if I had any questions.  I had to chuckle to myself.  I said, "No.  I'm just going to have to trust that you know what you're doing here."  I don't see me being able to have an opinion that would contribute in any way.

I had no idea that a pacemaker would be so difficult for her.

While sitting there, as I said, Harlie was watching Rio.  Well, at one point the room got very quiet.  The doc turned to me and asked what she was watching.  I said, "Rio.  It's a really cute movie."  And right then a scene came one (remember that it was quieter than usual as they were watching her heart activity and not talking at the moment) when all of a sudden - rather loudly - one bird says to another, "I was just on my way to CLAW YOUR EYES OUT!"

Yeah, like I said, it's a really cute movie.

 Awkward!

After they were comfortable with her settings, they sent her to John, to put on another freaking Holter monitor.  Ugh.  We removed the stickers from the EKG at the same time, and that was a real fight.  I REALLY wish she would understand that if she just held still it wouldn't hurt as bad and it would be over sooner.

So, our next appointment is in a month.  Unless her Holter monitor results make them want to see her sooner.  I'll take it off sometime this afternoon and mail it back.

Okay, that's it for now.  More later!
Thanks!
~Christy

Quick Update

On Tuesday, the 20th, I took Harlie back to DC so they could take a look at her incision, which was still bleeding a little.  They also made more adjustments to her pacemaker settings.  They are going to let her heart rate get as low as 50 at night.  So, they set different settings for the night from 8pm to 6am.  Pretty cool how they can do that, huh?

Anyway, the whole appointment was a little traumatic for Harlie.  When it came to looking at her incision, it took five people (two of which were men).

They removed the steri-strips and cleaned it all up and then put new steri-strips in place.  Then they put a dressing over it.  It's a good thing, too, because there was a place at the top of her incision that wasn't closing up.  And it started bleeding when they started messing with it.  Katie told me that in the past five years she has never had a patient come back seven days post-op with bleeding.  Harlie just has to be different all the time.  It's kind of annoying.

And for a girl with low tone, she sure can be strong when she wants to be!!!

Harlie and Katie

The pacemaker team wanted to see what her heart was doing for a longer period of time, so they put another Holter monitor on her for 24 hours.  And Katie said she should stay home from school one more day.  She is still sensitive in her chest, so I thought it was better to let her take it easy.  

Wednesday was crazy.  Because I had to get everything ready and pack for our first mini-vacation in four years!!!!  Woohoo!!!!

We went to Charleston, SC to stay with some friends and it was FABULOUS!!!!  And I can't wait to tell you all about it!  And show you pictures!!!  

But, I have tons to do - unpack and stuff.  Then I have to pick Harlie up early for speech therapy.  She hasn't had any of her private therapies in three weeks!  I'm glad to be getting back to our normal since before the surgery.  I had no idea this pacemaker surgery would be so time consuming.  I'm so excited to see how Harlie does in school today.  I really wish I had walked with her and Terri into school so I could see her classmates greet her.  It's been three weeks since she was in school!  I really hope she knows how much she's loved!  

Okay, more fun stuff to come soon!  

~Christy

I just have to make a quick call...

Another week, and no updates!  Here's what's happened:

Harlie's BAHA (bone-anchored hearing aid):

I don't know if you remember, but we borrowed a BAHA from Harlie's audiologist to test it out and see if it helped.  And it did.  It worked so well that we kept it until she asked for it back.  So, she ordered one for Harlie.  It took a while for all the paperwork and authorizations to go though, of course.  And we got it on Monday.  

The aid sits on the bony area behind her left ear (her side with no hearing).  So, she has an aid on each side.  The soft band is so much nicer than the one that was on the loaner aid.  The loaner one was velcro, which made it difficult to get it tight enough, without it being too tight.  So, while she would ask for the BAHA at school (or say "yes" when asked if she wanted it) she could only wear it for a couple of hours at a time.

This one is adjustable by sliding it, so it's a lot easier to get it to a more comfortable fit.  And I can tell because on Tuesday morning I put it on her before we left for school.  I was thinking she might tolerate it for a few hours, at most.  So, imagine my complete surprise when she came home and was STILL wearing it!  Terri said she never messed with it or wanted to take it off.  Wow!  And I got an e-mail from her hearing impaired teacher that said she did awesome with her BAHA and that her eye contact was amazing while wearing it!  Woohoo!!!

Of course I can't help but think we should have done this years ago.  While I know that hindsight is 20/20, it is still hard to stop myself from thinking if only.  Maybe she would be further along academically.  She would definitely have been exposed to way more language.  I know I shouldn't beat myself up.  But, I would like it noted that I never really had any one lobby for a BAHA - even when she was young.  Why didn't some doctor, nurse or therapist try to talk me into it?  Tell me the benefits, the positives???  I don't know, maybe it was brought up.  Maybe I didn't hear it.  Maybe I had my hands full with life or death decisions.  Grrrr.

Gotta shake it off and move on.  She has one now and she clearly loves being able to hear more, or better or whatever she's getting out of it.  It doesn't do much for her hair fashion, but I suppose hearing is more important.  ;-)

Holter Monitor Results:

You might remember that last week Harlie had a Holter Monitor for one night.  Well, the results are in and her lowest sustained heart rate was 38, highest was 79 and mean was 47.  So, it is now confirmed that she does, in fact, need the pacemaker.  :-(  So, we are now looking at available dates to get that done.

While we don't need to rush to the ER because of it, I don't really want to wait, either.  We have a couple options within the next two weeks.  But I need to talk it over with Tom and we haven't had a chance yet.  It's hard to focus when the kids are screaming and running around.  So, we'll have to wait till after they go to bed.

What I did today:

So, one thing that's been on my to-do list for weeks (okay two months) is to make a phone call to Medicaid to see what our financial options are (if any) as far as going out of state for medical care.  Plus, I was told that they reimburse for travel expenses (something I can't believe I've never investigated after all the freaking miles we've racked).  I got a name and number of who to call several weeks ago.  I've called numerous times, but there's always been a recording that said something about the mail box being full and to try back later.  But, we're now exactly one week from traveling - so I've run out of time.  So, I need to make more of an effort.  Here's how it went (and my answer to why I've never done this before):

1.  I called the number again, same message.

2.  I searched their website and could not find what I needed, so I called the main number to the Dept. of Medical Assistance, went through the whole automated system and finally got to a place where I could press 0 for an operator.  Finally I get a real person and I told her what I was looking for and she said she needed to transfer me to another department.

3.  I got disconnected.

4.  I called back.  She gave me another number to call.

5.  I called the number she gave me, just to hear a message that said, "Due to circumstances out of our control your call could not be completed at this time. Please try back later."

6.  I called the main number again.  Told her about the message.  She said, with annoyance and attitude, "Well, ma'am, you just need to keep trying."  One thing that always gets me is how parents get treated when we are already doing something we never wanted to do.  I don't have to do this crap for my healthy kids.  Did she think this was fun for me?  Hell, at least she's getting paid!  Not me.  Nope I do this kind of crap for free - all the freaking time.  For five freaking years.  No bonus.  No vacation time.  So to try to make her realize that being nice is better I embellished a bit and said, "Look, I have a sick daughter and I'm just trying to get her the medical help she needs.  I don't work there.  I don't know this system.  Can you please just help me?"  Well, let me tell you, that changed her tune.  She got real nice after that.  She said that the number that I first tried (for weeks) is broken so she'll e-mail her and have her call me.  So I asked for her e-mail address so I could do that myself.  Which she gave me.  And then told me to have a nice day.

7.  I kept trying the second number she gave me.  Gave up and called my Medicaid case worker (who is awesome and very good about returning my calls).  I left a message.

8.  I continued to try to get through to that number and I finally got through, got an automated system, went through that and finally got a real person.   Yay!  Gave her my info and she said, "I'm sorry, ma'am, I can see that you are her parent, but you are not listed as an authorized representative on her file.  So, you need to call the Department of Social Services and ask for worker ID #_____, tell him or her that they need to list you as an authorized representative to speak on your daughter's behalf and then call me back and then I can talk to you."

9.  After many deep breaths, I call the Department of Social Services and unbelievably, our social worker was there and available.  She said, "WHAT?!? How old is your daughter?"  I said, "Five."  She said, "This is crazy!  You aren't listed as an authorized representative because your child is under 18 and you are her PARENT!"  She was slightly annoyed.  She then apologized for it (even though it wasn't her fault) and then put me in there as a rep anyway.  She was very nice and helpful.  All was good again.

10.  I called that number again, and started the process over.  Luckily, I got a nice woman this time and she answered my questions.  One - no, they cannot help us if a hospital in another state does not want to enroll in Virginia Medicaid.  We're on our own with private insurance and having to pay out of network costs (I don't even want to think about that right now).  Two - for travel reimbursement info, I need to call another number.

11.  I called that number. Got a nice guy.  I gave him my info and he plugged it into the computer.  When I gave him my address, he said, "Oh, I used to live there."  So, I said, "Where are you now?" (because I thought it was a local company) and he tells me some city in Virginia (can't remember now).  Then he asks me where we're going for treatment.  I give him the address in Boston.  And I hear him plug it into his computer.  Then he exclaims, "Wow!  That's over 500 miles away!"  Um, duh?  Boston is in Massachusetts and you live in Virginia.  Certainly you knew it was gonna be far, right?  Anyway, so he says, "Oh, you have to call a different number for that, and all I have to say is good luck."  Are you kidding me?  I cannot help but think no amount of money is worth all this frustration and time.  Oh, my precious time...

12.  I called that number and got a recording that they were not available and to leave a message.  So I left a message.  I'm pretty sure I'm never going to get a call back.

13.  I hear back from my Medicaid case worker.  See?  I told you she was good about calling me back.  And she's always so helpful!  So, she tells me what I need to do if we decide to have surgery there.

14.  She calls me again to tell me that she investigated the travel reimbursement thing more.  And that I need to get a letter of medical necessity from her local doctor and have him fax it to Dr. Adiele with DMAS so he can approve it and then forward to transportation.  Okay.  Got it.

By then, the kids were coming home from school and Cooper was waking up from his nap.  There went my quiet time.  And my ability to make any more phone calls.  Okay, so my ability to make any more phone calls was probably more affected by the previous 14+.

So, on Monday, I'm going to have to make more phone calls.  Awesome.


It occurs to me as I write this that I still have no idea what kind of reimbursement we could get - if any.  Full price of plane tickets?  I doubt it.  But I'm in too far now to quit.   

On another note...

Thank you for all your support on my book deal.  I can't tell you how much it means to me.  Being able to talk to you through my blog has been a life-saver.  Thank you for always being here for me!

Love,
Christy xo

Why Doesn't Harlie Like Stickers?

Because of this...

The Holter monitor came off this morning.  Tom was the bad guy and yanked off the tape.  I was the mean mommy who sat there and took this picture.

Tom said that one day we'll have to video it, so you can see, and maybe better experience, some of the fun things we get to do to her.  I don't think that tape even sticks that bad to her skin, but it doesn't matter.  She clearly has memories of similar experiences with worse tape and more sensitive skin (like post heart surgery, or any kind of surgery, really).  It's really quite awful.

But, it's over for now.  And she went to school seemingly happy, albeit late.

Today is "bear day" at school.  (Insert scared face here.)  But she got to take her own bear, so that's better. (Insert relieved face here.) She chose a white bear that lights up on the inside.  It was a gift to her many years ago (she was six months old) from a very nice person who visited us while she was in the hospital for her first Easter.  And she actually likes it.

Okay, more later!
Thanks!
~Christy

Cardiology Appointment

Harlie had a bit of a rough day today.  I picked her up from school around 12:45 and went to her speech therapy appointment at 1pm.  After that, we went to her cardiology appointment with one of my favorite doctors - Dr. Gullquist.  Here's the skinny on my concerns:

Higher oxygen saturation levels:  Her sats are higher now than ever before, which is wonderful!  She's lived in some pretty low numbers (60s and 70s) and is now living in the high 80s and low 90s.  In the many conversations I've had with her doctors, this usually meant that if her numbers were higher, that meant that they could close her fenestration.

I will simplify the explanation to this:  during her last heart surgery (called the Fontan) they created a hole (fenestration) in the connection that carries the blood from her body to her lungs for the blood to escape during higher pressures.  If her sats were low, that meant that her pressures were high enough that the blood had to escape through the hole.  As the pressures decrease, the blood passes the hole and does not need to escape, causing better oxygen saturation levels.  I think the normal thought was that then you close the hole and all is well.

However, it is not that easy.  Here is what I understand... leaving the fenestration open (as it is now) carries a low risk of the patient having a stroke.  Performing the actual procedure of closing the fenestration and for the next six months after - carries an even higher risk of the patient having a stroke.  And, because of that, they have to really thin the blood even more than it is now.

Plus, they think that in a failing Fontan (which is what will eventually happen, requiring a heart transplant) that if the fenestration is closed the patient gets sicker, faster.  And if left open, the patient essentially buys a little more time to get a heart transplant.  I'm not saying that if closed they can't get a transplant, but I think the window of opportunity is shortened.

The reasons to close the fenestration are:  1) if the patient wants to exercise more.  So, if she wanted to run, for example, her sats would go down pretty quickly.  The heart and lungs just can't keep up with the oxygen demands, requiring rest times.  And 2) I can't really remember.  Maybe it was to raise the sats a little?  But, I told him that I saw 94 on her monitor the other day and he said that's about as good as they are going to get - even if we close her fenestration.

So, I really don't see any reason to close it.  I'd rather go with the smaller chances of a stroke and a bigger window of opportunity to get her a new heart one day.  I suppose if she ever does want to run or exercise we can revisit the situation then.  Things are always changing and developing in the medical field, so who knows what they will learn in the next 5 to 10 years that might change our decision.  And things are always changing with Harlie, too.  So, we'll revisit this later if need be.

Low heart rate at night:  Over the years her heart rate has been dipping lower and lower at night.  I haven't really been that concerned because I know she has second degree heart block, so her heart doesn't beat at a normal rhythm - it will have longer pauses between beats on occasion, which makes the monitor indicate a lower beats per minute number.

This was expected to happen eventually, which is why her surgeon placed pacemaker leads in/around her heart during her first heart surgery at just four days old.  So, she's sporting a Holter monitor for the night to see what's going on.  I am pretty sure that she won't dip down to her lower heart rates tonight, just so she can make me look like an idiot.

However, if it is true that she is dipping down to lower heart rates than desirable, we will need to go on ahead and get her pacemaker hooked up and working.  Everything is ready to go, they just need to install the battery device in her abdomen area and hook it up to the wires.  I'll discuss the ins and outs of that when the time comes.

Bony protrusion to the right of her sternum:  I recently noticed that she has a bony growth just to the right of her sternum.  Since they cut the sternum for open heart surgery and then use wires to put it back together, the bone can just heal over the wires like that.  I knew that this could happen.  But, I really thought we were in the clear.  It's been a year and a half since her last surgery after all.   So, we do nothing for a long time until we think it needs to be fixed.  Then they can shave the bone down.

When I noticed it, I automatically assumed that's what it was and so I wasn't worried.  But, then today someone made me wonder if it was something more.  Or different.  Then I thought, "what if?"  And then I thought, "what if I miss something big one day because my perspective of what's important is so skewed now?"  Eh, that's just a bony sternum, not a mass of something deadly.  Eh, that's just a screw coming out of her jaw, no biggie.  Oh, her sats are 70?  Whatever, they've been worse, I'll just give her some oxygen. Eh, her heart rate is 35?  Whatev, I'll just lower the alarm setting so it doesn't wake me in the night. 

I will say that I decided I will have to get CPR certified soon.  Couldn't hurt.

She had an echo done (ultrasound of the heart) to check things out.  She has a mild leak in there.  It's still there, and still mild today.  So, that's good.  I don't ask anything about it, really.  Because I'll deal with that problem should it ever arise.  That's what yearly check ups are for, right?  So, you know how they do an ultrasound with the wand (or whatever they call it) and the gel?  Well, it doesn't hurt.  But, try telling Harlie that!  WHEW!  She HATES getting an echo done.  I tried to reason with her, but she would have none of that.  I finally had to just hold her hands.  I did manage to get her to hold my phone so she could play Angry Birds or something.  Holding the phone did get her to calm down a little for a bit, but she wouldn't play it.

So, then Beverly (who did the echo) had to put the Holter monitor on her.  Oh boy.  That was torture.  It's just a bunch of leads stuck to her chest.  With wires attached to the leads.  And then taped to her skin. What's the big deal?   The wires are plugged into a reader and she wears the reader around her neck/shoulder.  Oh, did she cry!  After the monitor was in place, I tried to put her dress back on.  She didn't want any part of that.  If the dress went over the monitor, then that meant she had to leave with it on.  And she was not happy about that!  It was a long struggle to get the dress on her.  I finally bribed her with the promise a Curious George DVD in the car and movies at home.

Once the dress was on, and the monitor went over her shoulder, she has not let it go.

I think she's afraid someone will tug on the wires or something, so she's keeping it close to her.  Although I did manage to get a smile out of her...

When it was time to go to bed, she would NOT - I repeat NOT - let us take off her dress.  So, she's sleeping in it.

The monitor can come off in the morning.  I am so glad she doesn't have to wear it to school.  But, I am not looking forward to removing it!  I will have to see if I can get Terri to do the dirty work for me.  I'm pretty sure she's going to be late to school.

Oh, and I just had to go upstairs and lower the alarm setting on her pulse ox.  We set it to alarm at 40 or below.  And it alarmed enough times that I had to change it to alarm at 35 or lower.  So, maybe it will be indicative of what's been going on after all.  I have to run the Holter monitor back to MCV tomorrow and he said he'll let me know the results early next week.

So, that's it for tonight.  I have way more to blog about and I'm really hoping I can do that this weekend. Brandy is coming over this weekend to help out, so I think I'm going to skip over to the library to get some peace and quiet with my computer during the DAY so I don't have to miss out on sleep.

Thanks!
~Christy

Cardiology Pre-Op Appt.

Yesterday we went to Northern Virginia for her pre-op appointment with her cardiologist.  While I wasn't feeling 100%, I was certainly better than I was on Wednesday.  The trip went okay, all things considered.  Since I was in bed all day on Wednesday, I didn't get things ready like I normally do (put gas in the car, clean it out a bit, pack her bag, etc.).  So, we jumped in the car and headed out of town and I totally forgot to look at the gas gauge.  Oops.

So, we got on the HOV, which is a gamble.  And even though I feel like we went there just recently, I couldn't remember how to get there.  This appointment wasn't at the hospital (which I could drive there with my eyes closed) it was at the outpatient location in Fairfax.  Anyway, I forgot that there isn't an exit for 495 from the HOV.  Darn it!!!!  So, my gas light is on, I'm driving in the wrong direction and can't do anything about it because there's no exit for MILES and the traffic is backed up and crawling.  UGH!

Finally, we get to an exit (the Pentagon) and I felt like it was too risky to turn around and get back on the interstate without putting gas in the car.  It was LOW.  And one thing I have noticed about Northern Virginia is that there doesn't appear to be very many gas stations.  So, we drove for a bit and asked another driver where a station was.  Luckily it was fairly close and easy to get to.  Unfortunately it was super expensive (like 30 cents more per gallon!) and when leaving the station it forced you to go in one direction (not the way we wanted to go, of course).  So, after breaking a few traffic laws (I saw no reason why you couldn't make a u-turn there!) we were back on track.  Whew!

And we arrived only 10 minutes late.  Not bad.  Funny though - when the nurse took us back, she said, "I was thinking it wasn't like you to be late".  HA!  So, I thought to myself, she thinks we're someone else (because I'm always late) and I don't think I've ever seen this person in my life.  But when we get in the room she makes a comment that she remembers Harlie very well.  I always feel so bad when I don't remember people who remember us.  But, in my defense, there have been so many people...

Anyway, Harlie had an EKG and an ECHO.  And she hated every minute of them.  Neither of these tests hurt at all.  But, the whole thing freaked her out and she cried and cried and kicked her feet and was super mad and probably super scared.  And it took two of us to hold her down.  In her mind, I can only assume that she has no idea what's coming next.  It kills me.  One day it will click for her, I just don't know when that will be.

Heart-wise, she's fine.  I've always heard that about a year after the Fontan surgery (which she had in July 2010) that they do another cardiac cath and possibly close the fenestration.  I know most of you have no idea what I'm talking about.  But, right now, it's just too hard to explain it - so don't worry about it for now.  Her cardiologist doesn't want to do that anyway.  She wants to wait longer.  The issues that Harlie's heart has right now are:

There is still some muscle causing a little bit of obstruction when the blood tries to leave her heart to go to her body (this is where they did the DKS surgery in June 2009).  Right now it is still considered "mild" so that's good.

Something about the pressures in her Fontan are a little high.  But, it's okay.  She was crying, which makes the numbers be at their worst.  And even at their worst she wouldn't do anything right now anyway.  So, all's good - for now.

She wanted to check out Harlie's heart rate.  Which means a Holter Monitor.  Ugh.  After the two tests earlier, I really did not want her to have to have a Holter Monitor.  She has to wear it for 24 hours.  And while I really would rather her not have to deal with it - a) she couldn't have it done in the hospital after surgery because of her body cast and b) I couldn't live with it if I didn't do the Holter and there was something wrong.  So, even though I am sure everything is fine, it is better to be safe than sorry.  Even if that means that Harlie will be mad at me.  Yet again.

As we were leaving, Harlie kept signing "off" - she did not want to leave with those things stuck to her chest.  We finally got her dressed and out of there with her holding her chest and stomach protectively.

Of course, at the time, I totally forgot about gymnastics this morning.  So, I struggled with the decision to let her try to go and participate (with the leads, cords and monitor I'm thinking it would be difficult) or keep her home.  I hate her missing it since she loves it so much.  But, last night her pulse ox alarmed several times with low oxygen sats (74), which is weird because she's been hanging out in the high 80s.  And for the first time in MONTHS we had to turn on the oxygen concentrator.  So, combine that with her runny nose she's had for the past few weeks and we ultimately decided to just keep her home for the day.  No gymnastics.  No school.  Total bummer.

Back to the appointment, the only thing that really bothered me was that her doc said that the anesthesiology team would make the decision as to who is her anesthesiologist - a cardiac anesthesiologist or one with more ortho experience.  ACCKKKKKKK!!!!  WHAT?!?!?!

You might remember this recent post which would explain why the thought that she wouldn't have a CA totally stresses me out.  Not that any other anesthesiologist wouldn't have made the same decision - but still.  And when he did chest compressions, he knew he was dealing with a Glenn circulation - not sure how that plays into it.

So, the anesthesia team will decide if she needs one more experienced in spinal fusion surgeries or in the heart.  They could do a combo - but not sure if they would have a CA with an ortho consult or the other way around.  I suppose the combo would be fine - but to not have a CA in there at all would just stress me out.  Period.

I guess at this point, I know just enough to make me scared.  If I knew more, maybe I wouldn't be so scared about their decision.  But how in the world would I know more about anesthesia???  We have an anesthesia pre-op appointment the week before her surgery.  So, I'm just not going to worry about it until then.  And then we'll talk face-to-face and I'm sure I'll feel better about it after that.

The trip home was fine.  No traffic, really.  We stopped for lunch and let Harlie go potty.  She walked through the restaurant holding her chest and stomach and walked like she was hurt or something.  I guess she's got a little drama-girl in her.

Then, that night Tom and I went to a seminar for parents who are transitioning their special needs kids into Kindergarten.  I will talk about that later.  This post has gotten long enough!

As always, thanks for reading!
~Christy

ps - I might be going a little crazy with the signing links.  Sorry! But I can't help myself!  It's so fun!

Good News!

We are going home!!! 

They took her pacer wires out and she has to stay for observation until 5:30pm, and then we are FREE TO GO!!!

Harlie is SO over this hospital stay.  She is fighting everything - even suctioning, something she deals with all the time, all of a sudden is too much.  I think she is just trying to regain some control over her life.  Who could blame her? 

And she's had another rough day.  They removed her chest tube dressings and removed the sutures.  They said that the spots heal better without the sutures in there (not dissolvable ones).  And one of hers was already looking angry and red.  But, in just starting to remove the dressing, the nurse practitioner had to call in for reinforcements.  Harlie was fighting - and HARD! 

After that she took out the pacer wires.  Earlier she had the Holter monitor removed.  All the stickers everywhere have thoroughly pissed her off!!!  She hates those things! 

Then came the removing of her IV.  They had so much tape around it, that was agony!  But, once it was out, she felt so much better. 

Last night she made me a bit nervous (only in that I thought maybe our discharge today could have been threatened).  Her nurse didn't like her high blood pressures and her high respiratory rate.  So, she called the resident and after going over some things she guessed that she was probably just in pain.  Which really made total sense.  Duh.  So, they gave her some Tylenol and took her blood pressure a little while later, and it was fine.  Whew! 

I think she realizes she's going home.  Tom took the train up this morning and checked us out of the Ronald McDonald House.  When he came back up to her room she saw the stroller.  We haven't gotten her dressed yet, but that is going to happen as soon as I get back to her room after finishing this post.

I will have to go into more detail later, but the Holter monitor showed that she is staying in Junctional Rythm.  They said that right now it is fine and that she could possibly stay that way from here on out.  Or it could resolve itself in time.  Or her heart rate could start to slow down and then action would have to be taken.  I think a pacemaker would have to be hooked up if that's the case, but don't hold me to that.  This is new to her.  It began after surgery.  So, we will follow-up with her home cardiologist in the next few weeks and do another 24 hours on the Holter monitor.  Then I think she will have to go back for regular tests and exams until they determine what (if anything) needs to be done. 

Wow.  Post-op day 9!  I can't even begin to explain how I'm feeling right now.  The thought of going home and having the Fontan behind us is surreal.  And it brings tears to my eyes.  It is a relief I just can't put into words.  We made it and she is amazing. 

Okay, gotta go home!!!!  I can't wait to see her mood change!

Thank you again for all your wonderful prayers, comments, and support!  Being up here can feel so isolating.  Your comments and messages are so wonderful to receive.  Please know I am so, so grateful!!!

Much love,
Christy

Post-Op Day 4 - late update

At 7pm tonight I went to go get some dinner downstairs and when I got back to her room, this is what I saw...



Now how darn sweet is she? And while I think she looks quite comfy and cozy, it makes me oh so sad!!! I try so hard not to be sad, and for the most part, she really helps. It is almost impossible to be sad when she's so happy and playful and funny. But, she's not any of those things right now. And I miss her!

As far as how things went today...

They pulled her chest tubes out, which is great. While they tell me that is pretty painful, she should be much more comfortable later. And I really like not hearing the bubbling of the suction. Plus, it's just one less thing to have to worry about.

She had a fever today. They took cultures, just be on the safe side.

They took her off CPAP, but decided to put her immediately back on. Her heart rate was still pretty high (around the 160s, which is very high for her) and with the fever, they just didn't want to tire her out too much. After a few hours, they took her back off CPAP to see what she could do. And then a few hours later, they put her back on CPAP again. They said she will stay on it for the rest of the night.

I forgot to mention that they were thinking that she had a collapsed lung on Thursday. When they took another x-ray on Friday morning (after she'd been on CPAP all night) the x-ray looked "significantly better." So, hopefully another night on it will do the trick so she can come off of it for good tomorrow.

They have been watching her heart rate closely today. They took her off the pacemaker to see what she would do. And then they put a holter monitor on her to get a more detailed look at what's going on. She will wear it until Saturday night and then the doctor will read it on Sunday. The reason why this is an issue is because she already had 2nd degree heart block (her heart beats have long pauses and short pauses, with no rhyme or reason) and with her main heart defect (congenitally corrected transposition) she is at a higher risk for complete heart block. Which would NOT be good, and would make her pacemaker dependent.

Tom left last night. He took his mom and Murphy home after our fun day yesterday. It is always so much harder when he's not here. He always makes sure we eat right and it's just plain better when he's here with me. Since he drove them home last night, he took the car. Which is not that big a deal. The RMH has a shuttle to the hospital during the day. But today was so pretty, that I decided to walk there (it is about two miles, one way). Plus, I knew I was going to have to walk home anyway because they don't have any shuttles back to the RMH after 5:30pm. And I like to hang out with Harlie until she goes to sleep for the night. Luckily, it's staying lighter longer. I just don't want to walk home in the dark.

My mom came up on the train today to spend the day with us. Again, I was hoping that Harlie would have some sort of reaction. Nope. She still just lays there like a wet noodle. No spunk. I am really hoping that she'll start to turn around tomorrow. If she doesn't, I will officially be worried.

As of right now, there are two theories as to why she's not more herself.

One is that all the sedative drugs she was given could have settled into her tissues and so her body could be still feeling some of the effects.

The second is that she is working so hard to breathe, that it's just too hard for her to focus on anything outside of breathing. Basically it's like she's running a marathon. I mean, how much talking, laughing, etc. do you think marathon runners do while running?

Either way, she should be getting better by now!

So, she will remain in the CICU again tonight.

Hopefully I will have a good update in the morning. Thanks for thinking of us!!
~Christy