Thursday, December 19, 2013

We are fine.

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

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

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

Me, Michelle, Carol and Amy

Tom and me

Thanks Bert and Amy for having us!

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

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

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

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

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

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

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

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

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

There are a few small miracles there:

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

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

WHAT?!

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

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

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

Seriously cute stuff.

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

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

We are fine.  Really.

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

Much love,
Christy xo

Friday, December 13, 2013

Heart cath results

I really wish I had better news to share. I really believed that things were going to go better. I certainly feared what I actually heard, but didn't think it would go that way.

Her Fontan pressures are too high. That is causing more shunting, which is why her oxygen saturation (sats) are low. This explains the oxygen requirement. And the Lasix (diuretic) requirement.

I tried so hard to not cry when her doctor was telling me everything. But, I couldn't help it. I am very sad, scared and hugely disappointed. I know enough to know this is very bad. And the harder I tried to hold it together, the worse it got. I don't cry often. Very rarely, in fact, which is probably pretty hard to believe.

Prior to her Fontan operation, which was done in July 2010, her pressures measured 18 (20 is considered high). Today, her pressures were 24. So, there was nothing that could be done in the cath lab to help her, which was our hope.

What does this mean?

Well, it's complicated. I know that high pressures with a Fontan is bad. I think the simple answer is that it means her heart will not last as long as it would if her pressures were better. So, a heart transplant would be needed sooner versus later.

I also know that we can't leave things alone. We are going to have to spend some time and energy to try and find out the cause (which doesn't always present itself, meaning that we may never know why). I also know that we need to get with pulmonary to see if her lung disease is a factor, and if anything can be done from that angle.

Here are more questions/issues:

1. Who should oversee this, doctor-wise? Her docs in Richmond? Or her docs here in DC? There are pros and cons either way. But, I foresee hospitalizations in her future (some meds need to be trialed in the hospital to make sure they work for her), and quite frankly, I think I'd rather be an inpatient here than in Richmond. I've been trying to maintain local docs when I could. But that means that her care is still wide spread. At this point, I'm afraid I need to consolidate and focus on receiving care in one place (or in less places than we are currently gracing with our presence). This is not as easy as one might think. The pediatric medical community is small, I've spent years building relationships, and I don't want to hurt any feelings or burn any bridges. All I want is to give my daughter the best chance I can to have the longest, highest quality life I can possibly give her. And spreading her care all over the place is making that more difficult.

2. Does this mean she has to stay on oxygen? I don't know exactly. She tolerates low sats, meaning that she doesn't pass out, or become highly symptomatic (seems to be fine). So, do we take away the oxygen and allow her sats to be low during the day (buying her freedom from the tanks) and give her oxygen when she sleeps? I don't know. At this point we don't really know how low she gets because I don't let her get low. We need to trial her on low to no oxygen while she's monitored so we can see what happens.

3. Could the cause of her high pressures be obstructive sleep apnea? Apparently, if she suffers from this, her CO2 (carbon dioxide) levels could be high, which can raise pressures. She needs a sleep study to rule this out. It can be a wait of weeks to months for date. We have attempted to do a sleep study several times in the past and it has never happened because she either she got sick, or circumstances changed and the study was no longer needed. I do not look forward to this process. At all.

4. What does it mean if she has sleep apnea? Will she need help breathing while she sleeps? I don't know the answer to either question. I suppose we will have to cross that bridge when we get there.

5. What if she doesn't have sleep apnea? What happens then? I think we try meds. Which they have already started to tweak. Are there meds we could add to help? Well, in kids with pulmonary hypertension, they try Sildenafil (Viagra). But, this is not pulmonary hypertension. I don't know exactly what it's called (a dysfunctional Fontan? A Fontan with challenges? I don't know). The Fontan is a completely different circulation than the way your heart and lungs are supposed to work. Apparently Children's Hospital of Philadelphia is conducting a study on kids with Fontans with higher pressures and Sildenafil to see if it has the same affects (possible lowering of pressures) as some kids with pulmonary hypertension. So, this is fairly new I guess. Awesome.

6. How will we know if something works to lower her pressures? A heart cath is the only way to measure pressures. So, we can look forward to more in the future. More awesomeness.

7. What if it isn't sleep apnea, and meds don't work? I don't know.

8. Will her pressures continue to get worse over time if they don't get better with intervention? I don't know. Apparently there can be time periods of better and of worse over time.

9. How does this affect her quality of life? I don't know.

Earlier, when I spoke to her cardiologist, we discussed that it would be nice for me to meet with the pulmonolgist here (which won't happen over the weekend) and they could try some things while she was inpatient. At first, I said, sure. While we are here, let's see what we can find out. But shortly thereafter I spoke with Tom and we decided that we just can't do this now. It's almost Christmas and Harlie has already had one helluva year. I'm not prepared to stay into next week. And we aren't going to be able to answer the big questions now anyway.

So, in the morning, I'm going to have the doc in charge call her cardiologist to make sure that we aren't taking a huge risk if I take her home tomorrow (Saturday) and wait until after the first of the year to meet with pulmonary, and address the issues as an outpatient.

We are heavy hearted right now. I don't want any of this. And I am so tired of having to do so many things I simply don't want to do. We need some recovery time. We need to regroup and find our hope again.

When I went on Facebook to post an update earlier, I saw a picture that my dear friend Ann (who I was in San Diego with in October) shared. It simply said, "we can do hard things." Funny timing. I suppose we can. But I can tell you for certain that we don't want to!

It's late, and I am beat. Thank you for all the love, thoughts, prayers and comments today. I mean it when I say we couldn't survive this life without your unwavering support.

Much love,

Christy xo

 

Wednesday, December 11, 2013

Pre-op appointment and random pics

Tuesday, December 10

Just wanted to give you a quick update... We took Harlie to her pre-op appointment with her pediatrician today.  While we were there, she had a spot on the other side of her neck (smaller than the one last week) that opened up on it's own (or the trach collar rubbed it open).  I don't know what's up with this incision!  He wants to wait on her blood work results before giving us his blessing for the heart cath on Friday.  We are so close...

We left there to get blood work done.  Harlie was not happy about that at all.  I never did get a chance to tell you about the last time she had to get blood work done there (Labcorp).  Brandy was with us that day (maybe a month ago?) and Brandy offered to hold her down for it, so I didn't have to.  She's so thoughtful.

Well, after they put the elastic band on and were ready to stick her, she started signing "potty."  Clearly, I thought she was just trying to get out of it.  And even if she wasn't, she only needed to wait another two minutes and then they would be done.  There was no way I was going to have them stop while they had everything out and ready to stick!  Well, she peed anyway.  All over poor Brandy.  When she stood up she said, "Oh, and now it's going into my socks." If you've ever had to go and have blood work done, you know the chair you sit it and how the seat is kinda scooped so you sit in it?  Well that was full of pee after Brandy stood up!  Harlie was soaked, Brandy was soaked, and there was pee in the chair and on the floor.  Oops.

Of course they yell for housekeeping.  And as we got together enough to leave the room, they said, "Thank you!"  I had to laugh.  And then we said, "No, thank YOU!"  They really were fantastic.  They were so sweet to Harlie and you could really tell that it was killing them to stick her.

Anyway, so this time Jamie was with us.  We made sure that Harlie had already used the potty before they sat down.  Jamie offered to hold Harlie for me.  I love my nurses and how good they are to me.  Some of the same people were there to do this blood draw as the last time.  Again, they were so compassionate!  One of the nurses said she just couldn't hold Harlie's arm - so she went and got someone else to help.  I was trying to get Harlie to understand that it will be so much better if she just holds still.  So, I asked her if she wanted one stick, or three sticks.  She immediately responded, "one" and I said, "Then you have to hold still."  She tried, God bless her!  Luckily, they got it on the first try.  And then one of them gave her hug afterwards.

We've really noticed recently how much more expressive Harlie is getting.  For example, when Murphy got home from school today, Harlie showed him her bandage from her blood draw.  I know that doesn't sound like much.  But the fact that she wanted to show him and did so totally on her own, is a big deal to me.

Anyway, her pediatrician wants to see what her white blood count (WBC) is today to make sure that it isn't higher than what it was last week (10,000, which is normal).  My fingers are crossed that the number is no higher and that the culture doesn't grow anything.  The results from the culture they took last week in the ER were NOTHING.  Nothing grew, which is great!

Wednesday, December 11

I just heard from the pediatrician's office that her WBC is still 10,000! So, it's a go!  Whew!  Yesterday, a nurse from the cath lab in DC called to go over everything.  She said that she was first case and that we had to be there at 7am.  Which meant we would have to leave at 4:30am!  Luckily, she called today and changed our time to 9am.  YAY!

It's so weird to be saying "yay" about something like this.  I'm definitely not looking forward to the day/procedure itself.  But, I am looking forward to hearing some info about what's going on in that mysterious body of hers.  I'm actually nervous about the whole thing.

Anyway, since I haven't posted pics in a while, I thought I'd share some now.  Totally random. All bad quality, taken with my phone.

During speech therapy.  She loves it.

Does that face say, "I love you" or what?

This is what she does when she sees me
walking toward her with her feeding.
Kinda hard to get to her g-tube like that.


Helping around the house.

She's very thorough.
She's really gotten into washing the dishes.  I was in the office the other day when I heard the water running in the kitchen.  I was very focused on what I was doing, so I kind of forgot about the water.  Later on, when I went into the kitchen, all the dishes that were in the sink that were dirty were in the drying rack.  Clean.  She is too funny.  

I think he was looking for his buddy, Otto.

He's such a good sport.  Cooper put the stuffed
pug on top of him and he just sat there.
Our goldfish have their own tree and snow.

I LOVE the way she is looking at Murphy.
I think she's just tickled to be a part of licking the icing.
That's it.  More later!

Much love,
Christy

Thursday, December 5, 2013

Long Update. No school. Quick ER stint.

I started this post on November 25th...

I don't even know where to begin since it's been so long since I've last written.  Harlie is fine.  She's happy.  The bruising is all gone.  She is still drooling.  Some days are better than others.  She is finally getting the two front teeth that she's been missing for forever!  I think she lost them during her spinal fusion surgery back in March of 2011.  I'm anxious to see how her smile and face will look with her "new" jaw and with all of her teeth.

I really need to work on finding pictures of her after all of her jaw surgeries.  It would be interesting to see how her face has changed through the years.  But our photo storage is a mess and would take me hours and hours to go through them.  So, I don't see that happening any time soon.

Things are crazy as usual.  But, Harlie is finally free from antibiotics since practically July!  It was a weird adjustment not giving her any extra meds.  I am glad to have that all behind us now.

We have a date for her heart cath - December 13th.  She will have a pre-op appointment with her pediatrician earlier that week, and will have to have some blood work done.  I think they will keep her overnight after the cath.  It is in DC.  Clearly, I'm hoping that it will go well and that we'll finally get some answers regarding this oxygen requirement.

I am more over this than I can possibly put into words...


I find it very stressful to need the oxygen all the time.  It's also tiring.  And it's tiring to be stressed. The other morning, I switched the regulator from the tank we used the prior day and put it on a new tank.  But air leaked.  So, I tried again.  Still leaked.  So I went in the house and got a new tank and tried again.  Still leaked.  So, it wasn't the tank, it was the regulator.  But, it worked just fine yesterday!  So then I had to go back in the house and get another regulator (which I just happened to order the prior week, just in case).  Now, what if that happened when we were at school?  She wouldn't have been able to get oxygen until I brought her a new regulator.  And what if I wasn't at home?  So, now we have to carry around an extra regulator.  And it's those experiences and "what if" thoughts that makes this so freaking difficult.

And the worst part of it is that all the work we've put into giving her a better airway, is almost for nothing as long as she's on oxygen.  She can't be capped.  And she can't have a sleep study.  And she certainly can't be decannulated (get the trach out) on oxygen.

And, most importantly, I hope this need for oxygen isn't a sign of a larger problem with her heart or her lungs, or both.  December 13th can't get here fast enough.

It seems I am not done wishing time away.  It is not the way I want to live.  I want to stop and enjoy.  I want to provide her with better, age appropriate experiences.  Like this one...


Maybe 2014 will be our year of less medical, and more joy.  Wouldn't that be something? Because I gotta tell you, 2013 pretty much sucked.  We are ready for uneventful, boring and steady.  In other words, joy.  When I close my eyes, I can see it.  Funny, though.  It's always been that way.  I've been thinking that was right around the corner for years.  That's hope for you.  It gets you through, even when it doesn't turn out the way you wanted.  Then after the disappointment, hope returns for something else.  That hope is a funny thing.

So, now that the heart cath is just three weeks away, I am worried about her getting sick.  And she is today.  She has been home from school for two days and I will keep her home again tomorrow.  At this point, I think I am ready to throw in the towel on this school thing.

On Monday, I didn't have a nurse for the first half of the day.  So, I took her to school.  It's a lot of work getting her to school.  It takes all of my time from 6:30am to 8:30am.  So, Tom handles the boys and I handle Harlie, with the help of a nurse.  It's quite ridiculous.

Anyway, as I was getting her out of the car to go into school after 8am on Monday, I noticed how insane the whole process was.  And how incredibly drained I felt.  I just don't think I can do this anymore.  And if I feel this way, then how does Harlie feel?  After all, she's the one who needs the oxygen.  And she has to work so hard for everything.  And after a really rough year, isn't she exhausted, too?  Is she really able to put all her energy into learning if she's using so much just to be there?

So, I wrote out the pros and cons to putting her on home bound services until January.  The only real con is that she won't be in school - with her peers.  But, when she's at school, she's working.  Not playing.  And to be honest, she doesn't play with her peers.  At all.  For whatever reason - she doesn't interact with them, despite their many efforts.  And it breaks my heart.  Either she's just not ready, or she knows she can't communicate with them, so why bother?  Or she just doesn't have the energy.  I can say for certain that I don't have the energy myself to play with my friends as much as I want to.  Now throw in a major communication obstacle and I guess her actions are understandable.  She interacts just fine with her brothers at home.

~~~~~~~~~~~~

November 29

It is now the day after Thanksgiving and I have officially made the decision to keep her home from school from now until January.  I've told her school and all the necessary parties to make it so.  And despite all the thought I've put into it, it still doesn't feel good.  It just goes against everything to purposely keep your child OUT of school.  And it makes me sad, too.  Is accepting the same as giving up?  Maybe not.  But it feels like it is.

Just in case there's any confusion, home bound isn't the same as home schooling.  With home bound, her teacher from her school comes to the house to teach her for one hour.  For one, she needs a teacher specialized in hearing impaired learning.  There aren't many.  So, her teacher who teaches her at school comes after the school day to teach Harlie.  The formula for home bound is one hour for each school day missed.  Of course, this is for a typical student and is to cover general education.  I have to wonder where her IEP (individualized educational plan) comes in since it includes gen ed AND hearing impaired time each day along with one hour of speech therapy per week.  So, I'm hoping they will add some services to her home bound schedule.  I want to do what's right for her health-wise, but I hate to have to sacrifice educationally at the same time.  I'm hoping they don't want that either.  So, we'll see.

Since she requires so much specialty education - there is no way I would EVER consider homeschooling her.  I've had to learn a lot to take good care of her.  I'm sorry but there is no way I could do her justice in the educational department, too.  I am only human after all.  Her teacher mentioned that she wants to start to use a reading book that is meant for English as a second language students - I would never have thought of that.  That just proves that the more brains that come together for Harlie's education, the better.

I feel really bad about not blogging in so long.  And I feel especially bad about not posting some thoughtful, thankful post about Thanksgiving.  I am thankful every day of the year.  Most of the time.  But, right now, I just don't want to talk about how thankful I am.

To be honest, I'm having a rough time.  This year has been so hard in so many ways.  And it has taken a toll on me.  We were supposed to go to Tom's mom's house in Pittsburgh for Thanksgiving this year.  But, we just couldn't.  On top of Harlie having a cold (I'm guessing) we've had to travel so much lately and it has worn me out.  I just couldn't bear to think of packing all her stuff up again.  Every time I pack her stuff, that means it has to be unpacked, then repacked, then unpacked again.

And there's a level of stress that goes with packing her stuff.  If something breaks, I won't be able to run out to CVS and buy another one.  So, I have to pack more than I'll probably use.  And what if I forget something?  I usually think about that for hours after we've left.  Even with this list I've prepared, I still manage to screw something up:




It doesn't help that I STILL have this stupid piriformis syndrome.  It is commonly known as a "pain in the ass."  The piriformis is under your glutes (your butt) and it squeezes on the sciatica.  When it first started it felt like it was a cramp that I couldn't relax.  Then it started pressing on my sciatica.  It's awful.  And the funniest part is that sitting is one of the worst things you can do!  Now isn't that something?  As freaking worn out as I am, sitting causes the most pain.  Someone has one hell of a sense of humor, huh?  It doesn't necessarily hurt while you're sitting (although sometimes it does) but I will pay for it the next day(s).  We went camping a few weekends ago and it was a three hour drive each way.  It knocked my recovery back a couple of weeks at least.  And I was in a lot of pain for several days afterwards.

Anyway, I'm doing these exercises several times a day to try make things better and I'm seeing Rob Green at Active Chiropractic regularly for active release therapy and e-stim.  I'm making progress, it's just taking a long time.  And I've always felt that when I feel strong physically, I am stronger mentally.  So, now that it's been since July since I've really been able to do anything physically, I'm feeling pretty weak mentally.  Running was a huge stress reliever for me, and it's been gone now for FIVE horrible months!  It's killing me.  Blogging is another stress reliever, and well, you can see how often I've been able to do that!

So, in summary, I'm worn out.  I'm beat.  I just don't have it in me to do things that I used to do.  A perfect example - today Tom and the boys went to get our Christmas tree.  Harlie and I both really wanted to go.  But, she still has a cold and is very junky and the thought of packing her up was just too much.  So, Tom took the boys to get our tree, and Harlie and I stayed home.  I would have worked to make this happen before.  But not today.

~~~~~~~~~~
December 5th!

UGH!  It is now Thursday, December 5th!  I have been trying to finish this post for weeks!

On Tuesday, I woke up to find another abscess in Harlie's jaw incision.  My heart sank.  Of course all I could think about is what we had to go through for the last one.  So, we packed her up, I packed an overnight bag for myself, cancelled all appointments for the day, got coverage for the boys for after school and took her to the emergency department at VCU.  We got there at 9:30am.

How many photos do you think I have of Harlie
in a hospital bed?  Hundreds I'm guessing.
When the nurses came in with the IV kit, Harlie grabbed her arm (in a protective way) and cried, "No!"  We tried so hard to talk to her about being brave and still and how it would be over quicker with less pain, but she's just not ready for all that nonsense yet.  I will say that she seemed to try.  But, she's just not there.  One day... and then I think, when she gets there, will I be happy or sad? I guess a little of both.

They paged the plastic surgeon who took care of her last time (in August).  A few residents came to check her out and then the surgeon came down.  She said it was definitely smaller and less serious looking than the last one.  Since there's no hardware in there to save anymore, she thought she could just open/drain it right there in the ED to avoid having to take her to the OR.

At first I was nervous.  They've tried various drugs to help her calm down for things like an IV stick or echo (which is ridiculous - but that's how stressed she is when she's in the hospital) and it's never worked.  Her anxiety just doesn't stop.  So, I told them that, thinking they shouldn't even try.  But then they asked if they had ever given her Ketamine for that.  Well, I can't remember that!  I'm pretty sure they've given her Ketamine before, but as for at the bed for a procedure, I don't know.

And in that moment, when I have several doctors looking at me to tell them if I'm comfortable with doing it - I feel so freaking overwhelmed by her medical shit that I want to scream. There's so much I just can't remember anymore.  I should have started my own database when she was born.  As if I had time for that.

Anyway, I asked for a moment so I could think it over.  I hear all the time that I'm a good advocate for Harlie.  But, in these moments, I don't agree.  It's hard not to feel pressure from doctors.  And it's hard to know if the uneasy queasy feeling in your stomach is mommy gut or if it's just stress from being thrown into a crummy situation with no time to prepare.

In the end, I decided to let them try.  A doctor came and explained Ketamine to me in detail.  And I thought that it was worth the effort to try to avoid the OR and overnight stay.



Luckily, it worked.  It seemed superficial and was so small that she could barely put any packing material in it.  The packing material is purple and if it turns white then that means it's come into contact with bacteria. Her white blood count (WBC) was only 10,000, which is normal.  It gets elevated when the body is fighting an infection.  I'm really hoping that means that maybe her body was just trying to get rid of a stitch that didn't dissolve or something vs. an actual infection.

She was "awake" for the procedure.  Well, not really.  Her eyes were open, but she was elsewhere.  It was kinda freaky to see her eyes open the whole time.  After it was over, she gagged for about 15 minutes (he told me that gagging happens in about 20% of the cases).  Then she slept.  And she slept HARD.  Her nurse was getting a little nervous at her low heart rate.  But, that's the way Harlie's heart works when she's sleeping.  That's why she has a pacemaker.  It kicks in and makes her heart beat if her rate gets below 50.


As a precaution, they put her back on those freaking antibiotics (Clindamycin) for another 10 days.  They had her recover there for over an hour, then we got to go home.  It was close to 9pm I think when we left.  It was a long, hard day.  But, better than what I was expecting when we left that morning.  All during the waiting of the day, my lower back was so stiff I could barely move.  When I left and got home, it was way better.  It's clear to me that my body is having a hard time with stress.

Now I just have to hope like hell that this doesn't mess up her scheduled heart cath.  I've kept her out of school to keep her healthy and then this happens.  The problem is that is such a bad spot for a wound to heal!  Between her drooling, coughing secretions and the trach collar rubbing on her jaw, it's close to impossible to keep that wound clean!

Today is Thursday and we had to remove the packing and take a look at it.  The purple packing was white.  But she's colonized with pseudomonas, so that isn't surprising.  We put a little more packing stuff in there and taped it up.  We'll take a look again on Saturday.  They sent off some to culture, so hopefully when that comes back we'll know more.

At this point, I've been in touch with CNMC and they are willing to wait and see how she does before making us reschedule entirely.  My fingers are crossed that the culture comes back with nothing.  That's what actually happened in August.  They treated her so aggressively last time to save the hardware.  But, it is possible to have a sterile abscess.  So, that's what I'm hoping for.  I want this heart cath behind us.  I want to know what the heck is going on in her body that's making her need this oxygen!

I am ending this post here and now.  It is way too long and covers way too much ground.  And if you feel stressed after reading this, I'm sorry.  Truly.  I really want to be positive.  But, it's difficult right now.  And it's Christmas.  The little energy I have must go to the kids.  You know when your kids are really excited about something and you have to be excited right back?  Yeah, well, I'm running very low on that kind of energy right now.  I'll figure this out.  We'll all persevere.  I know it.  And I'll get better and will get back to my old ways and all will be good again.  No worries.

Much love,
Christy xo

Thursday, November 7, 2013

Harlie says, "I love you" to me.

Just a quick one to let you know that Harlie is doing well.  She's very happy and playful and rarely complains of pain.  I've decided to keep her home from school this week.  The bruises are fading more and more each day.  So, I think it's best not to rush back to school and either upset other students, or have them upset her by staring at her.  I know they wouldn't mean to upset her, heck, I stare at her a lot throughout the day!  But, I'd rather not risk it at this point.

I have been neglectful in taking daily photos of her to show how she's looking.  But, I did manage to get some video last night.  Kim came over yesterday to cut the kids' hair.  Later that night, I gave Harlie a bath.  I take her off the oxygen for her bath and while getting ready for bed.  Then all of a sudden, out of the blue, she put her finger over her trach and said, "I love you."  I couldn't believe it.  It was so cute I could have died!  I ran downstairs and grabbed my phone and took some video.  You can tell that she gets so excited to hear herself.  She hasn't been able to wear her cap in almost a year.  So, we've heard so little of her voice.  This was so wonderful...


and later on...


I've watched these videos like a million times.  She is such a sweet goofball!  I just can't get enough of her!

More soon!

Much love,
Christy xo

Sunday, November 3, 2013

Post-Op Day 4

Friday, November 1 (Post-Op Day 2)

We flew home Friday afternoon.  I was thinking that would be the worst day as far as swelling goes.  But, I was wrong.  It was Post-Op Day 3.  Anyway, this is how she looked right before we woke her up on Friday morning.

Post-Op Day 2
 This is her at the airport.
Post-Op Day 2
 She was in a great mood.  Very playful and cooperative.  I guess she was excited to be going home.  We definitely got some stares at the airport, but it wasn't as bad as I was expecting.  After I took the picture of her above, she wanted to take a picture of us...

  
 We couldn't fly Jet Blue like we normally do because their ticket prices were crazy expensive.  Over $250 MORE per ticket than US Air!  So, we flew a tiny plane home.  It was the kind where you had to walk on the tarmac then go up the stairs to get in the plane.  Harlie thought it was great.  They let us board first and gave us the first row.  At first, we had three separate seats on the plane, which clearly wasn't going to work.  So, they put me and Harlie together and Tom was just a few rows back.

The good thing about the smaller plane was that Harlie could stay in her seat AND look out the window at the same time.  She can't do that on the bigger planes.  So, that worked well.  She spent a lot of the time looking out the window...


The flight attendant was very nice and asked me several times during the flight if we needed anything.  And during the flight a lady in the seat behind Harlie tapped my shoulder.  I turned around and she handed me this piece of paper...


She said she drew it for my daughter.  She said her daughter is five.  So, I told her why Harlie looked like that and she was very nice, too.  Obviously she was wondering.  Which, I totally understand.  I would wonder, too!  Then she said that she could tell we take very good care of her.  I love nice people.  They make the world a better place.

My Mom and Dad picked us up from the airport.  When we got home the table was already set and the food was in the oven.  Grandma and Pap Pap had dinner all ready for us.  It was such a nice way to come home!  I had at least three helpings of everything.  I don't know why I was so hungry!  Then I fell asleep on the couch while the boys were going crazy.  That is so NOT me!  I was so tired!

Saturday, November 2 (Post-Op Day 3)

I had to force myself out of bed.  Cooper had a soccer game at 9:30.  I got out of bed at 9:10, brushed my hair and teeth and then took him to his game.  Inside, I was still asleep.  I am a terrible soccer mom.  But, I am cutting myself some slack.  Everything about me was exhausted.  Inside and out.  Brandy was working that morning and as soon as we got home, I went up and took a nap until she left.

After that I was still feeling very run down.  But, I got through the day.  Harlie was fine.  Really, she was.  Here she is playing outside for a few minutes...

Post-Op Day 3
In this pic, you can see how far her bruising goes down her chest.  Isn't that crazy?

Post-Op Day 3
 I took some pictures of the incisions (under her jaw) but they are pretty gross.  So, I will spare you.  She's still bleeding a little.

I took Harlie and Rooney for a walk that afternoon and came across a guy walking his dog.  Of course we had to stop and let the dogs say hi.  He saw Harlie and said hi to her and he did such a good job of not freaking out.  But, I couldn't stand the thought of him not understanding, so I told him that she just had surgery and that's why she looks like that.  He was very kind to her, and to me.

We had some friends over for dinner that night.  And when Marcy saw Harlie, she gave me a big hug.  Which was really nice because it is hard to see her look like this.  And I really appreciated her honesty.  I know people want to make me feel better by telling me she looks good.  But, I think she looks horrible.  And my stomach hurts when I look at her.  Even when she's smiling.  In fact, I think it hurts more because she is smiling.  What a brave, resilient girl she is!  I am the one who is weak now.  I think I need pain meds more than she does!  She can look at her picture and her reflection in the mirror and it doesn't bother her at all.  I'd give anything for her to talk to me and tell me what she's thinking.

Anyway, Marcy said at the end of the night that they had to go because I looked so tired.  I was exhausted.   Like not myself exhausted.  Yet, Harlie was up and running around, playing and smiling, and not complaining at all.

I got a good night's sleep and woke up feeling MUCH better, and much more like myself.

Sunday, November 3 (Post-Op Day 4)

Harlie is still happy and not complaining.  I put her hair up in two bows because her hair keeps sticking to her incisions (they are still bleeding a little).

Post-Op Day 4
 As long as her incisions are bleeding, I am not sending her to school.  And even with the bruising, I don't want to send her.  They are out on Tuesday for election day, so I guess I'll see how she looks then.  I think that bruising is going to be there, changing colors for a while.  So, I don't think I can keep her home the whole time.  I'll just have to think it over.

Anyway, Tom took the boys for a bike ride this morning and I took Rooney for a long walk, while Brandy came over to stay with Harlie.  Tom and the boys and me and Rooney met up at our local Starbucks to see a bunch of our running friends.


I am still nursing my piriformis injury, so no running for me yet.  I was making good headway on it until we went to Boston.  But, at least I can see the light now.   I have been seeing Rob Green at Active Chiropractic for a few weeks now.  He gave me some exercises to do and I get e-stim when I'm there.  I've gone several days with zero pain, and that's a first since July!  So, I'm very happy about my progress. I am going to be smart about this and not jump back into running too soon.

Well, that's about it for now.  As always, thank you so much for all your love and support.  Without it, we'd be mush for sure.

Much love,
Christy xo

Thursday, October 31, 2013

Post-Op Day 1

Funny that Post-Op Day 1 is also Discharge Day.  I suppose there's a first time for everything.  

We are back at the hotel now.  And while Harlie is smiling in the following photo, she is GRUMPY.  Whew!  The swelling is getting worse.  Tomorrow should be the worst day and then it should start to get better after that.  You think I would have been prepared for that, wouldn't you?  But each time we do this, I'm always shocked.  I guess I block this part out of my memory.    



Health wise, I think she's doing well.  We took the Vest to the hospital and were able to keep her Vest treatments up, which I think helped a lot.  We can't get the incisions wet for 48 hours.  But, her hair had so much blood and goo in it that I had to wash her hair.  So, I gave her a quick bath (without getting the incisions wet) and she protested.  A lot.  I felt so bad because I so wanted to give in to her and not make her take a bath.  But, I couldn't live with her hair the way it was.  She HAS to feel better now.  Right?  

The only thing that makes me a bit nervous is that she has been bleeding a bit since we left the hospital.  I'm thinking it's from the trach collar since she's been moving around a lot more now that she's not in a hospital bed.  

So, since I forgot about the swelling, I forgot that she wouldn't be able to swallow.  Again.  Sometimes, I think we are being tortured.  We get through something so horrible, just to have to go through it all over again.  And again.  Sigh.

Anyway, as far as how the surgery went... it went well.  She said that the new bone that grew looks good.  There's no sign that the infection did any damage.  But, just to be on the safe side, they are leaving her on the antibiotics for one more week.  

So, as far as her jaw goes, we are done for now.  Her surgeon wants to see her next summer.  But, that's it.  Now to get this oxygen thing figured out... 

Anyway, here are some pictures from the last few days...

Harlie and I right before surgery.
They let me go with her into the OR.  She no longer needs Versed to help her go without being upset.  She just goes.  She cried a little bit right before we left and I asked her if she was scared and she nodded her head yes.  I just told her that it would be a quick one and that we'd be right here when she woke up.  That seemed to do the trick.  It was a quick one, so hopefully I am building up some trust with her.

I had a hard time sleeping the night before surgery.  I was so, so tired that day.  And since the Red Sox were playing that night, I knew it would be another long night.  So the second she got moved to the cardiac intensive care unit (CICU) and I saw that "bed" I jumped at the chance to close my eyes for a minute.  Or an hour and a half.


Being in the hospital will suck the life right out of you!

We brought Harlie's Vest and did her chest PT.  This was the night of the surgery and she fell asleep while getting it.  So, I guess it can't be that bad.


This was the morning of post-op day 1...
Post-op day 1
On Tuesday, we went to the aquarium.  It was great!  There was hardly anyone there so it was very comfortable.  It's the longest she's ever lasted there.  And I know it was her best time there.

Watching the sea lions and seals.
And for the first time she actually touched stuff!  Every time we've ever been it has been so crowded in the touch tank area, that Harlie didn't want to go in.  Well, this time, there was plenty of room.  And the girl could go and get things for her to touch so Harlie didn't have to move all around.  Harlie touched everything!  Some things she needed a little coaxing.  She touched an urchin, a crab, and a starfish.  And then we went to the new stingray/shark tank.  And she touched a stingray.  It was so cool to see her having such a good time.


The top of the big tank.
After the aquarium, we went and had lunch and drinks at a restaurant nearby.  Then we went to the carousel.  Harlie really seemed to enjoy it.  I loved that she loved it, but it made me sad.  All I could think about was how much I wish that her life could be more of those experiences than hospital ones.  This was surgery #40.  I think I might be getting tired of doing this to her.  I think we are all ready for a break.


The night of her surgery was the big Red Sox game in Boston.  We went to dinner and watched the game from there.  The restaurant was about three blocks from Fenway.  It was a lot of fun to be in the middle of such excitement!  Oh, life in a big city.

The bartender opened up a bottle of champagne and I took a hit right into my eye!  It was still fun, though.


The streets were packed.  They actually barricaded all around Fenway so you couldn't walk closer.  If you look in the background of the next photos you can see the building in the background with "GO SOX" in lights.  Pretty cool.



That's it for now.  We are flying home tomorrow afternoon (Friday).  I'm a little nervous about people staring at her tomorrow since it will be the worst day of the swelling and bruising.  But, we'll get through it.

Thank you so much for all your kind comments, posts, thoughts and prayers over the last few days.  It was so much fun to see all the photos on Facebook.  Thank you for taking the time to do that for us.  We are feeling the love and it is helping us stay strong.

Much love,
Christy xo

Monday, October 28, 2013

Pre-Op Day

What a long day.

We are beat.  I think Harlie fared better than we did.

Our first appointment was in Pre-Op/Admitting at 10 o'clock.  They did the basics - weight, height, temp and blood pressure.  Then we spoke to a nurse at length about Harlie's history, current status, etc.  After that, we spoke with an anesthesiologist.  She asked why we didn't do a heart cath first.  She was a little concerned about her cardiac situation.  But I explained that it doesn't work that way.  We don't have a choice.  The hardware has to come out first.  And we are here and Harlie is healthy.  I don't know what's going on with her heart and lungs - but she is NOT sick.  So, she sent us on to our next stop - admitting.  Tom handled that one while I sat with Harlie.

It was noon by this point and we had an hour till our next appointment - cardiology.  So, we went down to the cafeteria and got some lunch.  There we ran into Julie, a nurse we used to have when we were at Children's National in DC.  I saw her when we were here this summer, too.  She moved to Boston and now works here.  It really is a small world!  Anyway, it was so good to see her friendly face!

After lunch, we headed up to cardiology.  There she got an EKG, a pacemaker check and we met with her cardiologist who had us this summer.  I find him to be very easy to talk to and compassionate about her and all we have on our plate.  I brought him up to speed on what's been going on with her.

Unfortunately, the conversation wasn't great.  We won't know anything for sure until she gets this darn heart cath.  But, his thinking is that it is not likely to be a simple thing as a collateral vessel(s).  He explained why and it makes sense.  It also is in line with what her local cardiologist has said for years.  Which means that her heart may not be the cause of the oxygen requirement. That will send us back to pulmonary, which means we have to go back to the beginning.  That's where I started my questions last year.  And we never got answers.  She is just so complicated.  Her heart function - the Fontan, is less than ideal, in a kid with normal lung function.  Add her less than ideal lung function to the less than ideal Fontan function and what do you get?  Plus, he said that she could be micro aspirating, which, over time could cause lung damage.  So far, we've never seen any evidence of aspiration, but what the hell?  I suppose she could be.  Nothing about her makes sense, so why not?  But, we've done x-rays, a CT scan of her lungs in June and we are now doing Vest treatments.  I really don't know what else we can do.  Except leave Richmond for pulmonary.  Which I do NOT want to do.  But, I will, if I have to do.

But, I'm probably getting ahead of myself.  We have to take one thing at a time.  But, for now, Tom and I are feeling very heavy.  I don't want this to be a sign of something horrible.  But, the oxygen requirement for almost a full year, the struggle her body had with surgery in July, and then again in August, the addition of Lasix to her daily routine, and then an increase of Lasix every other day, means that we are going in the wrong direction.  Things are getting worse.  And there's nothing I can do to stop it.  I don't understand what's going on, and neither do her doctors.  There's absolutely no comfort in that.  And we have to wait at least SIX weeks for her heart cath!  How am I going to live with this worry for six weeks?

After that appointment, we headed over to Plastics to see her plastic surgeon, Dr. Padwa.  We didn't know how to get there from where we were.  I know how to get to Dr. Padwa's office, but I have to start from a certain place.  Anyway, we bickered about being lost, where to go, etc.  And it was very obvious that we were feeling very tired, and sad, and worried and that's just the way all that stuff comes out - being crappy to each other because there's no one else to do it to.  Luckily, we are not new at this, and we realize what's happening.  So we stop it somehow.

We went to Dr. Padwa's office and met with her.  That went well.  No heavy conversation there.  She thinks Harlie looks great.  And things are so much more improved than when we saw her last.  Harlie is swallowing and her mouth closure is much better.  They got some mouth x-rays and some pictures.  That sounds easy, but it wasn't.  Keep in mind it was well after 3 o'clock by then and we were all so tired.  And trying to get Harlie to look at us and hold still, etc. was a lot of work.  And I can't even say we were successful.  I don't know, maybe.  They said she did well, but all I can tell you is that I was done.  Then we went back towards cardiology to get chest x-rays.  We would have done it while we were right there (they are next to each other) but, we didn't have time.

Here's what she looks like underneath it all...


You can clearly see the hardware in her jaw that will be coming out on Wednesday.  Isn't it crazy?  Oh, my poor sweet little girl.  There is so much going on in her little body.  It makes me so sad sometimes.

Here is a side view...


After that we were DONE.  Luckily, her cardiologist didn't make her get another echo.  And come 4 o'clock (it's scheduled time) I was so, so thankful.  There is NO way she would have been cooperative for that.  And Tom and I did NOT have the energy to help her through it.

We left the hospital after 5 o'clock.  We walked those halls for seven hours, pushing her, and pulling her oxygen, both of us connected by tubing.  Weaving through the halls, and waiting rooms, going into restrooms and exam rooms with that oxygen in tow is exhausting.  I hate to sound like a wuss, but that oxygen changes everything.  And I'd like to think I'm somewhat physically fit and energetic.  Yet, it kicks my ass.

But, in those seven hours, we really never had to wait.  And if we did, it was for a very short time.  Our day in a nutshell:

1.   Spoke with a pre-op nurse.  Got vitals and discussed meds.
2.   Spoke with a different pre-op nurse. Went over history and discussed meds.
3.   Spoke with a pre-op anesthesiologist.  Went over current issues and discussed meds.
4.   Admitting, gave insurance info.  That was easy.
5.   Had lunch
6.   Got an EKG, completed paperwork about her meds.
7.   Got a pacemaker check
8.   Met with her cardiologist
9.   Met with her plastic surgeon
10. Got panoramic x-rays and various photos
11. Got chest x-rays
12.  Realized Tom left his cell in Plastics, so he had to go back and get it

Walking all over the hospital and then discussing Harlie's history, meds and current issues, over and over again - is EXHAUSTING.  But each specialty has to know that the information they are looking at is current and accurate.  So, I get it.  But, it's still exhausting.

Then we left the hospital and went across the street to get some coffee.  Tom went in to order and I stayed outside with Harlie.  Those are the things you have to do when you're lugging an oxygen concentrator around.  Some places are just too crowded for our wide load.  Anyway, while I was standing outside with Harlie, it took all my strength not to burst into tears.  There was a girl standing there asking everyone who walked by if they wanted to discuss the Syrian refugees.  No one wanted to, in case you were wondering.  And I couldn't help but notice that I was standing just a few feet away from her, planted in my spot, and she never asked me.  Funny.  I guess she could tell that I had enough of my own problems to worry about.  Then Tom came out and we walked back to the hotel.  Tom went and got us dinner and we ate it in our room.  Now we are waiting for the baseball game to start.

There is a lot on my mind tonight.  But, somehow we'll get through.  Harlie is happy and that's what's most important.  She was so good today.  She really is a good kid.  And I don't know how or why.  She has every reason not to be.  For now, I thank God that she doesn't understand all of this.

Thank you for all your love and support.  We are feeling it tonight, and we are so thankful.  Also, I want to thank my neighbors, Jasmine and Soloman for having the boys (including Rooney) over for a sleepover with their son on Saturday night.  And my sister, Sandy, for hanging out with them on Sunday and taking them to see a movie (coincidentally, Cloudy with a Chance of Meatballs 2).  And Brandy for staying at our house on Sunday night and getting them off to school this morning.  And, of course, Bethany for keeping the boys and Rooney this afternoon after school until Grandma and Pap Pap got there to take over for the rest of the week.  Whew!  It really does take a village...

Tomorrow is our day off and we are all looking forward to it!  Thank you again!

Much love,
Christy xo

Sunday, October 27, 2013

In Boston

It's Sunday night, and we are in the hotel in Boston.  We had a very lazy day today. And that was actually really nice.  You can't really have lazy days at home when you are surrounded by all the things that you have to do, eventually.  But, here, there's NOTHING for me to do!  Woohoo!

We left Richmond last night.  I started packing on Friday.  And then spent ALL day Saturday packing.  The thing is that when you pack medical supplies and equipment, if something gets broken, you can't just go to CVS to pick up a new one.  So, you have to pack more than one of something if you can't live without it. And now we've added The Vest to our stuff.  Tom was not happy about it since it is another heavy piece of luggage (that you can't check because it's a machine that costs $16,000).  But, I really think we are going to be thankful to have it.  Already it has helped her secretions.  After Saturday night sleeping without her normal humidification, her secretions were already thicker and stickier.  But, after a few vest treatments combined with breathing treatments, they've already turned around.

Anyway, here's the final result...



Holy luggage!  That's for three people, budgeting for a one week's stay.  And keep in mind that I budgeted that Harlie will not be needing anything from us (since she'll be in the hospital) for a couple of days.  My Mom and Dad came to our house and rode with us to the airport so they could take our car back home for us.  That will save us loads of money in parking.  Thank you Mom and Dad!

Soon after we arrived at the airport we heard from our friend, Carol, that her husband, Chris, was on our same flight to Boston.  What luck!  We had time for one beer and a lot of laughs before we had to board the plane.



Harlie took this photo...


Please keep Chris and his family in your thoughts and prayers as his mom (who lives in Boston and is fighting cancer) isn't doing well.  You might remember that Chris came to see us when we were at Boston Children's this summer.  We had to laugh that we were all flying to Boston, and all for not fun reasons.

Once we landed in Boston, Chris got us an Uber.  It's kind of like a taxi, but you order it from your phone and the cars are really nice.  I'm not sure if he specifically asked for a Suburban for us or not, but it was fitting considering all our luggage!  I tried to take a photo of Tom and Chris pushing all our luggage through the airport, but it was too blurry.  I don't know what we would have done without Chris!  Thank you for the Uber and the help, Chris!

By the time we got to the hotel and unpacked and settled in, it was late.  Harlie went to sleep and we stayed up and watched the baseball game.  Go Boston!  Hey, when in Rome!

This morning (Sunday) we slept in.  All three of us.  In fact, Harlie slept past 11 o'clock!  Seriously, what seven year old sleeps past 11am?  But we let her.  We're counting it as vacation.  As I was trying to wake Harlie (I figured 12 hours of sleep was enough, right?) I couldn't help but laugh at this...


Yes, we bring our own power strip with us.  You only have to forget that once.  Anyway, Harlie is so funny.  She is AWFUL to wake in the morning.  Seriously - mean and angry when I force her out of bed.  I send her straight to the potty.  And then she runs out with a smile, goofy and in a good mood.  She is something.  Here she is, just minutes out of bed, smiling, getting her first vest and breathing treatments of the day.


We were super lazy.  And enjoyed it.  But eventually we thought we should go somewhere and do something.  We thought about taking her to the movies to see Cloudy with a Chance of Meatballs 2.  But, after watching the trailer, and seeing how much food was involved, considering she doesn't eat any of it, I was afraid she just wouldn't get it.  I told Tom my thoughts and he said, "Now there's something you probably don't hear everyday."  I had her watch the trailer and then afterwards I said, "Harlie would you like to go see that?"  And she said, "No."  Okay, then.  That solves it.

So, we went to look for a place to eat lunch.  Maneuvering through the crowded sidewalks with her chair and the oxygen concentrator was a lot of work.  And all the restaurants looked crowded, too.  So, we went into Trader Joes and bought a few snacks (and a bottle of wine, of course) and then went to a deli for some take out sandwiches and headed back to the room for lunch.  But, the wall of the deli was screaming for some photos.





Then, later in the afternoon, Tom went to a Steelers bar that he found to watch the game.  They lost.  But he said he had fun anyway.  This is a very cool town.  Harlie and I hung out in the room, being lazy.  Enjoying our vacation.  Harlie found Tom's glasses...


She really cracks me up.

So, tomorrow we have to be at the hospital at 10 o'clock.  And we have appointments through 4 o'clock.  So, it will be a long day.  Then we'll have Tuesday off.  Not sure what we're going to do.  Might venture to the aquarium.  Since it's October, and it will be Tuesday, maybe it won't be crowded.  We'll ask Harlie and see what she says.  Then Wednesday is surgery day.  And hopefully we'll be home soon after!

That's it for today.  I will update again tomorrow night.

Thank you for all your thoughts and prayers this week!  We couldn't do this without you!

Much love,
Christy xo