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

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 tomorrow...

Tomorrow is Therapy Thursday.  But, no longer hyped.  Thank God.

She'll still have her speech therapy with Delisa who works with her communication device.  But, that will be it for therapy.  Because after that we are heading to MCV to see her cardiologist.  Here are the issues I want to talk over with him:

Her sats are GREAT!  The other day I saw 94 on her pulse ox machine and that is the highest number I've ever seen!  Her new norm seems to be in the high 80s/low 90s.  I'm wondering if this means that we can talk about closing her fenestration.  I'll explain that after I talk to him so that it makes more sense.

Her heart rate is really dipping at night.  She sleeps with a pulse ox probe on her toe, which is hooked up to a monitor (reads her oxygen saturations and heart rate).  For years the low alarm setting for her heart rate was 50.  Then after time, we had to reduce it to 45.  Then 40.  And now 35.  She's had a Holter monitor reading done several times, and they have always said she looks good, so I haven't worried about it.

But, 35 seems pretty low to me.  So, I'm going to ask him about that.

Her sternum has always looked great.  Especially considering it's been opened four times in three years. But recently I noticed that it is starting to bulge outwards.  I knew this could happen, I just didn't know it could happen 1.5 years after her last surgery.   So, I just want to ask him about that.  I really hope it doesn't get much worse.  Oh, just saying that makes me nervous.  I've had that hope before...

Plus, it's been a year since her last check-up.  So, it's time to see him anyway.  I'll let you know how it goes.

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!

Harlie's Back!

Yes, my friends, my sweet, funny, joyful little girl is BACK!

Things started to change Sunday night.

A little background first... Harlie LOVES to count to 10.  I know that sounds weird.  But she learned to count to 10 in sign a little while ago.  And she tries to verbalize each number.

During her recovery we tried to get her to count, knowing that she loves it so much.  But she refused.  Just like she refused to sign anything, or communicate in any way.

Well, on Sunday night, we put her to bed and turned on the monitor so we could hear her while we were downstairs.  And then I heard it.  She was counting!!!  We could totally tell that's what she was doing!  Tom and I knew things were looking up then.

Then Monday and today things were just different.  She's laughing and smiling and interacting and signing and playing and being herself again!  Oh, what a welcome change!!!  Her being happy again changes the whole feeling of the house.  She was really bringing us down!

Last week I took her to see her pediatrician.  She cried when I parked the car in front of the building.  Which was pretty surprising, considering those appointments are usually pretty painless.  Her doc was awesome, he listened to her heart and lungs while she sat in the chair beside me.  He said he didn't even want to put her on the exam table.  Pretty nice, huh?

He also said that maybe she was depressed.  She certainly appeared to be.  And he said that adults can have issues with depression after a major surgery like that.

I can't help but wonder what she hears/understands about these conversations we have with her in the room.  Sometimes I think she understands more than I realize.  So many times I have spoken with a doctor about something that she was doing/not doing and after that appointment, she stopped/started whatever it was I was talking about.  It's almost like she likes to make a liar out of me!

And just a few days after that appointment, she is totally back to herself!!!  Weird.

We went to see her cardiologist today for another follow-up appointment.  That went well.  Her oxygen saturations are still in the 70s, which is definitely lower than I would like.  Her doc said we should give her about six more months to see if they come up.  If they aren't in the 80s by January-ish then we might want to do another heart cath to see if there is something else going on.  Maybe after hearing that conversation Harlie's sats will come up miraculously.  Ah, if only!  We see him again in a month.

At the appointment today she waved hello and good-bye and was generally her goofy self.  She even signed "potty" and when I took her, her diaper was dry and she peed in the potty.  Wow!  She is one crazy little girl.  As far as her potty training goes, I'm just following her lead.

Oh!  And to prove my point about her making a liar out of me... I mentioned to her doc that she still won't walk any distance (like from the lobby to the exam room, which was NOT far).  Then we leave the appointment, she gets out of the stroller to push the elevator button, she stands there to wait for the door to open, it opens, she gets in, pushes the button for the 1st floor, stands there, walks out when the door opens and continues to walk - halfway to the stinkin' car!!!!  I mean, c'mon!!!  If he had looked out the window and seen her walking through the parking lot I would have lost ALL credibility!!!

Sometimes I think that girl just likes to test me and push me to my limits!!!  Well, she's going to get it this time.  Last week I called her physical therapist and she's going to evaluate Harlie for physical therapy on Thursday. And if she thinks Harlie needs it, well she's going to get it.  That'll teach her!  Try pulling one over me, I don't think so.  You have to get up preeeetty early to trick this Mama!

Speaking of Thursday, oh is that going to be a killer day.  Here's our schedule:

9:30-10:30 - feeding therapy
11:00-12:00 - speech therapy
1:00-2:00 - physical therapy (across town!)

She is going to be one tired puppy that night!  And so will Brandy and I!!!  Those are exhausting appointments for spectators, too!

And tomorrow night Harlie gets a haircut.  Her hair is just too long!  Don't worry, I'll take pictures.  Before and after, of course.

Thanks!
~Christy

No rest for the medically challenged!

First of all - sorry it has taken me so long to update the blog. I can't tell you how much I appreciate the calls and e-mails I've gotten checking on us. I have sat down to update you numerous times this week, but each time I have to stop and go do something else. It's been an unusually busy week - and not Harlie's fault this time! More about that later.

As far as Harlie is doing - she is doing well, I think. She isn't very active (and I'm not pushing her to be, either). She spends most of the time on the couch watching movies. While sitting and relaxing, her respirations are 75-80 per minute and her sats are in the 60s (sometimes low 70s, but not often) on 1 to 2 liters of oxygen. We realized within a few days that it doesn't matter how much oxygen we give her, her sats stay the same.

Before we left the hospital, her cardiologist said we didn't know where she'll finally settle out. Another thing she said was that this was an "enormous" surgery on her body. So, I need to understand that it will take some time for her heart - and her body - to recover. Knowing that helps my patience with getting her off oxygen. It's a pain to drag around. Oh - speaking of oxygen, I took Harlie to speech therapy on Tuesday (I'm a mean mom, I didn't give her much time off) and when we walked in the building a little boy looked at the oxygen tank and asked "Why do you have a vacuum cleaner"? I said, "I wish it was a vacuum cleaner"!

She's still pretty sensitive about her chest. They removed her external pacemaker wires on Friday. They were sutured in there pretty good. She was not a happy camper. They put those little round bandaids on the spots and when I went to remove them Sunday night, she was MAD! And washing her chest is a little challenging. But, all in all, I think she's getting over some of the trauma of the last two weeks. When she sees me coming to her with water or food, she willingly lifts her shirt and opens her mickey button for me. That's definitely an improvement and it's nice to see her more cooperative side again. And on Saturday night (the day we came home), when I put her in bed I told her (and signed) I loved her and she signed "I love you" back. Ahhh... things are right (in our sense of the word) again.

On Monday night, Tom wanted to go for a walk. He was thinking that it was too hot outside for Harlie and that she just wouldn't be up for it anyway. So, he said aloud to Cooper, "Want to go for a walk with Daddy"? And Harlie jumped off the couch and grabbed her shoes and signed "let's go." Well, that answered that. So, we loaded up the strollers (Harlie's with the oxygen tank and suction machine) and headed out. She loved it. And she's so funny about accessories. She wears them all - hair bows, headbands, sunglasses and hats. Sometimes all at the same time! But, she is very sensitive to sunlight, so I suppose she recognizes the benefits.

Well, back to why this week was so busy...

Murphy attended a week's long sports sampler camp at the YMCA across the street. Today was the last day, and I think Murphy is very happy that he doesn't have to go back. He was in the camp with our neighbor (Phillip) across the street, who is the same age. I took the boys in the morning, and Phillip's mom picked them up in the afternoon. On Thursday morning, through conversation, Phillip told me that Murphy just laid around the previous day during camp. WHAT?!?!? So, I asked the counselor if that was true and he asked me "Did Phillip tell on him"? Then he told me that yes, it was true and that they can't make the kids participate, although they try very hard. I later asked Murphy what he didn't like about sports. He told me that it was too much work. Geez. Today they gave the kids a t-shirt that says "All day I dream about sports". Yeah, right. Not this kid. Well, next year we are going to get him involved in something. I don't know how we're going to manage it, but we'll have to figure it out.

He also went to vacation bible school every night (Sunday through Thursday) of this week. My friend Jennifer took him with her kids to her church's VBS. He really enjoyed it. Each day he couldn't wait to go. And then last night (Thursday) they had a show where they sang songs and danced. It was really cute. The songs were great and very catchy. During the week the leaders asked the kids who they wanted to pray for and they wrote their answers on a board. During the show, they read the prayers aloud. Murphy's was about Harlie. He said that he wanted God to help Harlie since she came home from the hospital from heart surgery. I'm usually really good about not crying about life. For the most part, I'm happy and feel very blessed that Harlie has overcome so much. So, I try not to be sad too much. It's just not healthy for me. But to hear her say it aloud and say that Harlie is Murphy's little sister, well it just made me so sad - for so many different reasons - that I couldn't help but cry. Sometimes I just have to forge ahead and not think about things. So, to have to think about it from Murphy's perspective was a little overwhelming. It must be so hard for him to see what's going on, but not fully understand it.

I've tried to have conversations with him about it - to let him know that he can talk to us about it if he wants. But we don't really get anywhere. For example, one night during the first week of Harlie's hospital stay (Tom was still in DC with me) Richmond had a thunderstorm. Tom's mom called us and let Murphy talk to us because he was scared and he was crying saying he missed us. Well, when I asked him this week if he was scared when Harlie was in the hospital he said, "Yes Mommy, I was scared because it was thundering and I missed you and Daddy". Hmmm, not what I meant, but okay. So then I asked him if he knew that Harlie had surgery on her heart and he said no. Ugh. We've talked to him about it before - numerous times. And I know that he knows more than he's letting on because he's talked to other grown ups about it. I'm just not good at talking about her stuff in terms that he can understand. I guess we'll have to get some education on that, or at least get him in front of someone who knows how. There are so many reasons why having a medically fragile child is hard. But I'll have to save that for another post...

Anyway, I've spent the better part of this week (and I'm not fiinished yet) making Harlie's next round of doctor's appointments and getting her therapies back on schedule. So many appointments for one little girl. Ugh.

What's on the horizon? Well, there are some surgical and cardiology follow up appointments. And I'm working on getting her MRI and CT scan scheduled for her upcoming spinal fusion surgery (this winter). And we have to make some decisions on her next jaw reconstruction (ugh). We've decided that we are going to get a second opinion by a surgeon at Children's in DC. We just think that with her heart complications and drug tolerances, she really needs to have surgery in DC. After what we learned and experienced with this last surgery, we are afraid that it might be too risky to go to a hospital that isn't equipped with a cardiac team. And unfortunately, Children's Hospital of the King's Daughters in Norfolk, doesn't have a cardiac department. So, we will see the plastic surgeon from DC in September to see how we feel about him. I just hope that we like what he has to say about her jaw. Because if not, then we will be in one heck of a hard place.

On Monday, we have Harlie's surgical follow-up appointment in DC. I am anxious to see what they think about how she's doing. And then the week after that we have another cardiology appointment with her cardiologist here in town. I love him and I can't wait to catch up with him and get his perspective on things.

Well, this post has been long enough and I really can't devote any more time to sitting here on the computer! I'm neglecting my kids and Brandy is working her fingers to the bone! Literally. She hurt her finger today. I told her to shake it off and to get back to work. No. I didn't really. I was sympathetic. And I let her have our last bandaid. She's fine now.

Thanks again for all your support. We are very grateful!
~Christy

A day out.

Well, today was a really good day. Brandy and I decided to take Harlie OUT - and not to a doctor's appointment! So, we ran a few errands and went to Stony Point to have lunch and walk around the mall. Harlie liked being out so much that she didn't nap AT ALL! We couldn't believe it. And she was so good. She is really the most content baby I have ever seen! She just goes with the flow. A couple of people did look in the stroller and stare. I couldn't believe how obvious one guy was. He had a child in a stroller, too. It definitely made me feel uncomfortable, but I am sure that I will get used to it. I'm sure it is just curiosity. For the most part, people were nice. As Harlie gets older I think her personality will out shine her "imperfections". I think she is hysterical.

Tomorrow we have her cranial molding for her new helmet. Hopefully she will have it by mid June. And then we go see her pediatrician.

Oh, and another good thing, I spoke with her cardiologist today and he said that I can stop giving Harlie her diuretics. So we go from 5 meds to 3, which is great.

Well, that's it for today. I hope you are all well. I'm glad that you enjoy the photos. I think some of them are really starting to capture her happy personality.

Talk to you later,
Christy

Cardiologist appointment

Well, we went to the cardiologist today. That went well. He said that her chest tube site looked really good – especially for how long the chest tube was in (almost 6 weeks!). They did an echocardiogram, and all looks good with her heart. So far, so good as far as the effusion goes. We'll see him in another month.

We put Harlie in a high chair yesterday. I had to put a towel in the seat first because without it, she could barely see over the tray (she truly is the size of a 3 month old!). Anyway, once I put the towel in, she sat up higher and could bang toys on the tray and she LOVED it! Murphy brought her a balloon from his birthday party and she loved throwing that around, too. I got some good pics and will download them soon.

It was so nice to put her at the table with us during dinner. Murphy wanted to sit beside her. He asked where her spoon was. Oh well, it was just nice to have her with us. Hopefully we’ll be able to do more normal things as time goes on.

After our cardiologist appointment I took Harlie and Brandy home and then I went to my mom's surprise retirement party at Parker, Pollard and Brown. It was a GREAT party. They made a video for her that was hysterical. I thought it was a really good send-off for a great 35 years. Tom took Murphy to the bathroom and when he came back, Harry Pollard was giving a speech. Murphy busts in the room and says (very loud and proud), "Mama, I just went potty!" It was really funny. Well, it is late. Talk to you later.

Take care,
Christy

So many docs, so little time

So Harlie met her new pediatrician today. That went well, I think. They seem nice there. It is REALLY close, so that is a huge plus for me. It was tiring, though. Going over all her stuff and introducing new people to her can be a bit exhausting. Luckily he knows her cardiologists well, and they gave him a heads up.

I started working on getting all of her other appointments rescheduled. She has to see her general surgeon to talk about and schedule her next surgery (anoperineal fistula). He is in DC. She also needs to see an orthopedic doctor for her spine issues. They wanted us to follow up in April and obviously we couldn’t do that. They are also in DC. So, of course, I try to get them scheduled for the same day. I start by calling the surgeon and getting some dates. Then I tell the scheduler that I need to call ortho and will call him back. He says he can do that for me. Great, I say. I’m in luck and that doesn’t happen often! At some point, he says, “What’s wrong with her?” Nice. I answer, “a lot”. Then he tells me that coordinating these two appointments will never happen. The surgeon only has clinic on Tuesdays and ortho doesn’t have clinic on Tuesdays. Then his computer stops cooperating and he couldn’t get the ortho appointment scheduled. So, I’ll have to call back. So much for my luck.

I really thought that we would be able to take a break from doctor’s appointments for a while. I thought wrong. She has a cardiology appointment on Thursday, pulmonology appointment next Tuesday, pediatrician appointment next Thursday (and probably bi-weekly after that), she will meet a brand new doc (GI) in June, feeding clinic in June, general surgeon, orthopedics and ENT in July, and I still have to reschedule her appointments with her eye doc and surgeon.

That is 10 docs before July 5th. Oh, and we need to get her a new helmet – so that’s another bunch of appointments. Not to mention weekly physical and bi-weekly occupational therapy appointments. Sometimes I really don’t know how I’m going to do it. Just typing it is exhausting!

I changed her feeds to a higher volume per hour for 22 hours instead of 24 hours. That gave us 2 hours away from the pump. One less thing to have to carry to the doc today. And during bath time, I took her upstairs and gave her a bath at the sinks while Murphy played in the tub. It was nice to do that. I’m sure Harlie liked the change of scenery. We used her changing table for the first time since December. I think she liked her room. Hopefully she’ll be able to sleep there by the fall. She was sound asleep by 9pm, which was great.

Well, that’s it for tonight. Talk to you later.

Take care,
Christy