A little of a lot.

Since it's been so long since I've updated you on Harlie, I'll start there.

Her heart

It has been over a year since her last heart cath (it was in December 2013).  I feel like a lot has changed since then, which is good. She had her pacemaker adjusted and she's been able to spend some good time on room air. I'm hoping that means good things for how her lungs are doing.

So, right now I'm working on getting a date for a heart cath soon. I didn't want to have to worry about it with our Disney trip in December. I thought it wasn't smart to get it done before - what if something happened during the cath that would've prevented her from going or what if we got bad news?  So, we decided to wait until after the holidays.

It's interesting to look back at my decisions sometimes. In 2013, I wanted her to have the heart cath, despite the fact that it was done on December 13th. I could have thought it was too risky to go into the hospital so soon before Christmas - what if something happened during the cath that would've prevented her from being home for Christmas or what if we got bad news? Instead, I had hope and thought, what if they can do something that could get her off the oxygen before Christmas?

I think I'll always have a glimmer of hope.  But, I also think after eight years of reality slapping me in the face, I can't deny that things don't always work out the way I want them to.  Let's just say that I've gotten a lot of practice in learning to live with disappointment.

Her back

Anyway, another area I need to work on is her back.  The last time we saw her orthopedic surgeon (a year or two ago, I can't remember) she said that when Harlie complains about back pain regularly, we need to do something. She really did not want to do another surgery.  She would rather wait until she grows more (like when she turns 12 or so). But, if Harlie is in constant pain, waiting wouldn't really be an option.  The pain is most likely due to the area in her spinal fusion that became infected. The infection forced her surgeon to remove the bone graft and didn't allow for optimal healing.  Doesn't this just look like it could be painful?

It's so gnarly because after it got infected, they had to put a wound vac in it for several days.  And she had to go into the OR several times for debridement.  It was a horrible time.

Anyway, at this point, she complains about back pain almost every single day.  Some days are really bad and she might tell me that her back hurts ten times. For a while I asked her if we needed to go to the doctor and she would say no. Until one day, she said yes. That means she's pretty serious.

Then, when we were in Disney, I noticed that she would sit in her wheelchair while leaning to her left.  And, about six months or so ago, she stopped using alternating steps while going up or down the stairs.  We worked really hard in physical therapy and at home to remind her to take alternating steps.  And for a while, she would point out to me when she was doing it without being asked (so she was proud of herself).  But then it just stopped.  And she absolutely refuses to do it.  Period.

So, something is up. Darn it.  So, I'm working on getting that appointment scheduled, too.

Sleep Study

Another thing I need to think about is getting a sleep study date.  We've been toying with doing this for years and have yet to accomplish it. I'm pretty sure that my reasons for/against a sleep study are more complicated than I would like them to be.

We've been able to cap her some lately, which is nice. And the other night she asked to sleep with her trach mask around her nose and mouth instead of it being around her neck. I took advantage, and switched the trach mask for a face mask and capped her.  That way she would get what she wanted, and oxygen, too.  She fell asleep like that just fine and maintained good sats for a while.  But, I had a hard time sleeping knowing that she was capped without proper monitoring. So, around 1am I got up and took the cap off and returned her to a trach mask. She was making some noise (almost like snoring - definitely some obstruction noise), but her sats were at 84 instead of 91. Not sure if that means anything really. I just don't know.  I suppose we should do it, just to get some sort of data, if nothing else. But, I'm just not excited about anything having to do with it.  And decannulation (getting the trach out) isn't that simple. She has so many other issues.  I'm just afraid (among other things) that it might complicate another thing or that it will be temporary.  Anyway, far too deep of a discussion for today. So, as usual, I put off the decision for another day.

Hearing Aid

We finally got in to see her audiologist a few weeks ago.  We haven't seen her in far too long. But, as it turns out, it's been FIVE years since she got her very first hearing aid.  I can't believe it.  It almost feels like it happened yesterday. Anyway, she's due for a replacement.  Apparently they don't last much longer than that.  So, she got a mold of her ear and got to pick out another aid.

She puts this foamy stuff in her ear and lets it harden.  Then pulls it out to send it to the company to have the ear piece made.

She picked out a pink hearing aid (the one she has now is purple).  It should come in soon.  Oh, the things we find exciting!

Nursing

Another new thing for us is our nurse, Terri is back.  Harlie was happy to see her.  Terri hasn't worked here in a little over a year.  We missed her. We also made another change and let the nurse that was sharing the week with Brandy, go. I can't go into details, but I just felt like I had no other choice.  We've been so incredibly lucky with our home health nurses that I've never really felt like complaining about having nurses that much.  I mean, the requirement of needing them totally sucks and I don't know a soul that would argue with me there.  But, we've had such wonderful people that I've always felt good about it. They allow me to live as normal of a life as possible and I am eternally grateful for that.

But, home health nursing is a weird arrangement. The nurse is employed by a company. But they work in a patient's home. So, as a patient's mother, I am not their boss.  But, I have a say in what they do with my daughter. It is such a gray area. And when you want to make a change in nursing staff, you tell the agency, who then tells them.  There is no notice given to the nurse.  Which stinks for them. I shouldn't have to explain that it's just not smart to give a nurse notice. It puts the patient and patient's family in a vulnerable position.  But, typically in this business, there usually is another family who needs help.  It always seems like there are more patients than there are nurses.

So, making this change back to Terri wasn't as well received by one nurse.  And she sent me a horribly ugly message a couple of weeks later.  It was upsetting to read. It's clear she didn't like me and judged me poorly in a number of ways.

Think about that for a minute.

Someone was in my HOME for over a year, and was a caregiver to my child with limited communication abilities (whom I love more than words could convey) - and didn't like me.  Judged me.  Doesn't that sound horrible?  One should never have to have someone like that in their home.  I feel so violated.  Can you imagine having someone in your home watching you parent?  And judging how you live your life?  Ugh!  It's an awful thought! As if our life isn't painful enough anyway.  I keep thinking about some of the things she said and how we never asked for any of this. I wish we never needed a nurse. I love our nurses, but I would have been perfectly happy having three healthy children and never meeting them in the first place.

So, for now, I am done with strangers.  I would rather go without than having to start over with someone new right now.

Independence

On Monday, the kids didn't have school.  And we didn't have a nurse scheduled.  So, after Harlie's teacher came in the morning, I took all three kids - all by myself - to the mall.  I've never done that before. Harlie got a Build a Bear gift card for Christmas and all three had some Christmas money to spend.  So, we went and Harlie picked out Mikey, the TMNT, of course.

And Cooper picked out Toothless from How to Train Your Dragon.

Then, we went to Toys R Us and let them spend the rest of their money.  Murphy picked out two Disney Infinity characters, Cooper picked out some Trash Pack things with what he had left over after getting Toothless, and Harlie picked out a Baby Alive baby with a toothbrush and toothpaste.  They were all very happy.  Then we went home.  Success!  It's times like these - just being a regular mom, and not a special needs mom - that I've lost.  I'm ready to do more of that, and less medical stuff.

Feeding

Oh, and I almost forgot... another milestone for Harlie! I think I can officially say, that after eight years, Harlie finally knows what hunger is.  Wow!  She will tell me that she's hungry and will let me feed her.  YAY!  It doesn't happen every feeding, of course.  But, I will take it!  I'm very happy about this development.

My nephew

I've been able to spend some good quality time with this little guy lately...

His name is Chase, and he is my younger brother and his fiancee's baby.  He's about to be six months old. He's super cute.  And I've been keeping him a couple of days a week for the last few weeks.

Harlie took this picture.
She cracks me up.

Harlie loves him and helps me throughout the day.  She gets me his clothes and diapers and wipes.  And always makes sure he has a toy within reach. Last night, I wanted to get a pic of the two of them together.

And she decided she needed her eye patch.

And he clearly thought she was crazy.

Rooney might be a little jealous.

Or he saw that my arm had no support, so he came to my rescue.  Either way, he's such a good dog and is so tolerant.  Chase likes to grab his hair, and he just takes it.  Just another reason why Pugs are so great.  Man, I love that dog!

Okay, I think that's all I can do today.  Chase will wake up from his nap anytime now.  I have another post already started.  I am trying really hard to work this blogging thing back into my life.  I missed it!

Thank you for reading!
~Christy xo

Heart Cath Report and cardiology appointment

Harlie's last heart cath was December 13, 2013.  I received the report a few weeks ago and met with her local cardiologist last week.  The number that we (okay, I) was most concerned about was the 24 with a line over it (to the left of the pink circle).  The 24 is the pressure of her Fontan.  I won't even try to describe her heart anatomy (or function) in this post (other than that her heart was formed in a mirror image - so what's normally on the left, is on the right, etc.).  I guess I could have color coded the picture before I uploaded it.  That would have made explaining it a lot easier.  Oh well.  All you really need to know is that her heart is nuts.  And, while the 24 isn't great, it isn't "the" problem.

The main problem is the circled 86, which is circled by a pink marker.

That is the percentage of oxygen in her blood as it leaves her right lung and enters her heart.  Her circulation works like this:  heart is single ventricle, so it pumps in one direction only - to her body.  Red blood (fully oxygenated) leaves her heart and goes to her body.  It returns from her body (blue, needing oxygen) and goes straight to her lungs to get oxygen.  After it gets oxygen from her lungs, it goes into her heart, to be pumped to her body again.

Since the blood comes from her lungs - fully oxygenated - her sats should be close to 100% (not 86%).  It hasn't entered her heart yet - so her heart defects should not play a part yet.  Plus, I gave her to the cath doc on oxygen.  She was on oxygen in recovery afterwards.  Does that mean that she was on oxygen during the cath?  Because if that's the case, 86 is ON oxygen, which means that it would probably be lower if she wasn't on oxygen.

So, the question is... Why are her sats so low leaving her lungs?

And that means it's not her heart.  It's her lungs.  UGH!!!  This was actually my fear before the heart cath.  I just felt like her heart was probably more "fixable" than her lungs.  If the lungs don't work, I don't think there's much you can do about it.  While her heart is jacked up, but it "works" because they did a bunch of stuff to it, you know?  Plus, all of a sudden, I felt very unprepared.  I was all ready to learn about pressures and crap, and then I had to change gears.  And wait two weeks to talk about it again.  So frustrating.

I can't remember if her cardiologist said that her pressures of 24 are an after-affect from the low sats or not.  Or maybe they are just 24, just because that's her.  I can't remember.  I suppose it doesn't matter for now.  He did say that she has early elevated Fontan pressures.  The pressures go up in time, that's normal.  He said that kids 16 years old and up have pressures in the 20s.  She's 7 and hers is 24.  But, one can live with high pressures.  So, that's not the main issue right now.

So, now we have to see her pulmonologist to see what tests we can do to find out what her lung function actually is.

For those that don't know, Harlie had a chest mass in or around her right lung.  The right lung is made up of three lobes and the left is made of two lobes.  During my pregnancy with her, they found the lung mass and it was preventing the normal growth of her right lung.  After her birth, it became a back burner item, until she was about 8 months old.  The mass was still growing and it had begun to squish her good lung, compromising its function.  So, the mass had to come out and in August of 2007 (she was 10 months old at the time) they removed two of her right lung lobes.  They were able to leave one lobe.  And after that, she did much better.  She was finally able to come off oxygen (after a full year on it) and was able to learn to sit up and crawl.  Life really took off for her after that.

But now, is that one lobe doing more harm than good?  Is it permanently damaged?  Should it be removed?

We see her pulmonologist next Thursday.  And we'll go from there.

The whole thing is frustrating.  I just wish she could get a break.   It seems we are always having to worry about a life-requiring issue (heart, lungs, airway).

Managing her care (from my perspective as her mother) has become very overwhelming.  I have moments when I am confident in my decisions and my observations.  And I have moments when I am NOT.  And in her case now, her symptoms are not black and white.  Everything is grey and open to interpretation.  What if I misinterpret something?

I try to remember the times where I feel confident in what I interpret... for example, we took Harlie to the bowling alley a few weeks ago.  It was a fundraiser for the Deep Run High School Marathon Dance.  Brandy was with us and was focusing on Harlie while I talked (as usual).  Brandy started to notice that Harlie would walk up to the ball return and stop and rest.  Then pick up the ball, and stop and rest.  Then walk - slowly - and bowl.  Then rest.  So, she made her sit down and she checked her sats.  ON oxygen, they were 76!!!  Obviously, that's a sat she just can't tolerate.

So, clearly she NEEDS the oxygen.

Did I ever tell you about her not being able to digest her food when I was experimenting with her oxygen needs?  Well, just in case I did, I'll make it short - I wanted to see if she could tolerate lower sats, without the oxygen.  Her sats seemed to hang out in the low 80s (which I didn't think was that bad) without the oxygen.  But, after a few days, her body wasn't able to process her formula and I couldn't get in all four cans in a day.  So, her body was sending oxygen to main organs (and not as much to her GI system).  So, that means she cannot tolerate low 80s sats.

You'd think I'd be confident by now.  But it's scary to have to be the one to have to notice everything and know whether that thing is important or not.

Anyway, I don't know how definitive the tests and/or any answers are going to be.  One confusing thing is that he said she needs a CT scan of her lungs.  She had one back in June of 2013.  Lucikly, here in Richmond.  So her doc was able to pull it up and read the report.  It doesn't say much other than that her lungs are in better shape than they were in 2007.  Maybe if they did another one, or had that one from June re-read, with the radiologist knowing that her sats are low leaving her lungs, that would make a difference?  At least now we know what to look for.

Her cardiologist said that we will have to let her symptoms guide us and maybe make some decisions on faith instead of hard data.  Which is how we made the decision to remove the bad lung tissue.  He was the one that said it had to come out - and from what I remember, not every doc was in agreement at the time.  Yet, that proved to be the right call.

So, that's heavy on my mind.  And again, I find myself wishing time away.  Wanting to hurry up and just get to that next appointment, that next surgery, that next... whatever.  It's really a terrible way to live.  And I wonder when we'll get to place of just... living.

Another thing that's heavy on my mind is my Mom.  A few weeks ago she found out she has a bit of breast cancer.  We're really focused on the "bit" part.  Of course I don't think that's a real, medical term.  But, I'm making it one in this case.  She is scheduled for a lumpectomy tomorrow.  So, that's a good sign.  And her surgeon said it's the kind that responds well to hormones, so that's good as far as after treatment goes.  And it did not get into any lymph nodes.  We all feel positive that this won't be that big of a deal, really.  Just a small amount of time that was uncomfortable (she had a bunch of biopsies and an MRI) and a bit scary.  As long as that time stays small, all is good!

And to end on a more positive note, I have two more funny Harlie stories for you.

The other day Harlie wanted to play on the iPad.  She signs and says "game" at the same time.  Tom told her no, and to go play with toys.  With electronics around all the time, the toys just lay around untouched more than we like.  So, Harlie was clearly disappointed and went and sat in the living room for a few minutes.  Then she said, "Daddy" and pointed to her Vest treatment machine.  He said, "Oh, you want your Vest treatment?"  This was surprising.  She never wants her treatment.  So, he was like hell yeah you can have your treatment and went and got her Vest on.  He said that the second that last buckle was buckled, she looked at him with a smirk and signed and said, "Game."

That little sneak!!!  She knows she can have her iPad while she's getting a vest treatment.  You should have seen Tom's face when he realized that he'd just been had by a seven year old!  We were so damn proud.  That girl is one smart cookie!  I realize that this behavior is something that most kids do and most parents aren't as thrilled.  But, you have a different appreciation for this kind of thinking when your kid doesn't learn to read before first grade. Or talk.  Or isn't pegged as talented and gifted at age five.

Then, the other night after I had tucked her in and went back downstairs (and JUST sat down, of course) her heated trach collar equipment started to alarm.  So, I had to go back up there to see what was the matter.  And the second I walked into her room, the alarm stopped and she sat up and said, "medicine."  So, she figured out how to get the machine to alarm, knowing that I would have to come up there.  She is something.

I have to tell you that for YEARS I have read about kids doing stuff like this (on the trach board and Facebook) and I have always wanted Harlie to be able to do that stuff, too.  Another proud moment.  Of course, as my dear friend Sarah said, cute at first, not so funny later on.  I suppose she's right about that.  But, my other kids can scream my name, or jump out of bed and come down and bug us.  This is just Harlie's way of doing that.  And she should have a way, too.

Well, that's it for now.  More later!

Much love,
Christy xo

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

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

Heart Cath Results

So, she is out, as Tom said, and is doing fine.  The worst part about a heart cath is that she isn't supposed to bend her leg at her hip for six hours.  A constant battle in that Harlie never lays still. 

The best part - about THIS cath - is that it went great!  So great, in fact, that her doctor is comfortable sending her home after the required six hour recovery period!  We were shocked.  Leave it to Harlie to keep us guessing.  Unfortunately, we won't be getting on the road until after 10pm.  Oh well.  It's worth it.

Okay, on to the nitty gritty...

Her last heart cath (last April) showed that her pressures were measuring at 19, which is high.  When pressures are 20-plus they consider the patient too high risk to have the Fontan (the next heart surgery she needs).  They did the DKS to help reduce some of that pressure, with the hope that her number would come down.  So, today, she measured at 18.  So, not a huge improvement in one year's time.  While a higher number raises risks for sickness and complications after the Fontan, it is clear that this is the best we're going to get.  So, it would be too risky to wait any longer.  I will talk more about those complications after our pre-op appointment with the surgeon (July 12th).  I'm going to do my best to not think too hard about them right now.

Bottom line - she's a go for the Fontan on July 13th as scheduled.  So, I'm happy. 

It might sound strange to hear that I'm happy this.  So, just a super brief explanation for my emotions:  while the surgery and recovery will be hard time in our lives, it is ultimately what is needed to give Harlie the best chance for a long life.  Without the Fontan, her life expectancy would reduce dramatically.  And we have come out of prior caths with her NOT being a candidate for the Fontan. 

So, there you have it. 
~Christy

Heart Cath Underway

Just wanted to give you a quick update that they took Harlie back close to 12:30.  The doctor said that he is thinking it will take about three hours, give or take.  Access has been a growing issue.  Hopefully he will gain access without too much of a fuss. 

Harlie broke my heart this morning.  After we got loaded in the car, we went to pick up Jennifer at her house.  When we got there, Harlie pointed at her house and signed Kyleigh's name (Jennifer's daughter).  She just signs the letter "K" over her heart.  I just hate that she couldn't go and play - instead she had to come up here for a heart cath. 

She was really good while we waited for them to come and get her, though.  She has discovered my IPOD Touch and loves to play on it.  So, the other day I downloaded some preschool games on it for her.  She would play them all day long if I let her.  But, it really did make waiting a million times easier, for me and for her.  Whatever she needs to take her mind of the scary stuff that's going on, is fine with me. 

They let me carry her into the cath lab and be with her while they gave her some sleepy stuff to breathe.  I wish all procedures could be like that. 

I'll update you later. 

Thanks for all the thoughts and prayers!
~Christy

Heart Cath

Harlie's heart cath is tomorrow.  We have to check in at 11am, which works out great for traveling.  We *should* miss rush hour going into DC.

Tom is very busy at work right now designing some projects, so Jennifer is going with me.  Jennifer's husband broke his foot on Monday and he is having surgery tomorrow.  And Jennifer is still going with me!  I tried to change her mind, but she wouldn't have it.  I am so lucky to have such a great support network.  I am surrounded by wonderful people and I am oh so thankful for each and every one of you!

We will stay Thursday night and come home on Friday.  Hopefully, all will be smooth sailing with no surprises.  I am taking my computer, but have no idea when I can update you.  But, you know me.  I love to talk, so I'll do my best to keep you informed!

Please feel free to keep Harlie in your thoughts and prayers tomorrow.
Thank you!
~Christy

We have a date

Harlie's next heart surgery, the Fontan, is now scheduled for Tuesday, July 13th. Less than two months away. So hard to believe.

I don't want to do this again.

I dread every thing about it. The logistics, the being away from the boys (Murphy will be fine, but Cooper misses me when I go to bathroom. I don't know how we're going to handle the separation!) the food, the sleeping (or lack thereof), the standing next to her bed, seeing her after surgery, knowing that she doesn't understand, the stress, and the worry.

But I want her to live a happy, full, long life. So, it must be done.

Picking a date was difficult. No time is convenient for your daughter to have major heart surgery. Period. But I know that doing it now, while she is doing well and showing no symptoms (signs that her heart and lungs are having trouble) will give her the best chance at a successful surgery and recovery. Although knowing that doesn't necessarily make it any easier to take my perfectly fine and happy little girl in for a surgery that is very risky. The surgery itself is risky. And the recovery isn't easy. And it is a fact of life that some Fontans fail, which would be very bad.

Well, hopefully, her heart cath on June 10th will tell us that she's doing well, and her pressures are within a safe range for her to have surgery. Until then, I will try very hard to not think about it. Well, that's probably not going to happen. But, I'll try not to talk about it as much as I think about it. That's the best I can do.

Thanks,
Christy

Heart Cath

Just in case you're curious...

We now have a date for Harlie's heart cath.

June 10th.

Someone at the hospital got wind of my blog entry from yesterday and by 9:30am I got an e-mail that I would get a phone call that day.

And I did.

The scheduler was nice, and explained what she was waiting for. But, a simple phone call to let me know what was going on would have gone a long way. And I would have cleared up the situation a lot sooner, and had my date a week ago.

Oh well. I have my date now and I'm "happy."

Her DC cardiologist gave the scheduler a window of 1 to 3 months. Combine that with the fact that Harlie seems to be doing well cardiac-wise (hasn't needed oxygen the past few nights with sats in the high 70s/low 80s) and I'm thinking I should calm down a bit.

One problem is that I'm no cardiologist. I'm a mom. Of a little girl that I love more than words can say. And I want to do everything humanly possible to make sure that we give her the best chance at the longest, most high quality life possible.

And it's my understanding that being able to get the Fontan (the next surgery she needs) is no guarantee. Pulmonary pressures could be too high, making the surgery and the result, if done, too risky. And since the only blood that gets oxygen is in the upper part of her body (her head - then the oxygenated blood mixes with the rest of the body's blood supply to get oxygen to the lower part of her body) the bigger she gets - the lower her sats get (because her body gets much larger than her head). And, I think typically, they like to do the Fontan at a younger age (even though there is no magic age for when it is good or bad). And I think she's out of the younger age category now.

At any rate, having this surgery hanging over your head doesn't feel good. And I would never want to push it to the limit and risk not being able to get it at all.

So, to get to the gist of it, I'm glad it's scheduled so we can get more information to make the best decision possible.

Whew!

Tomorrow morning Murphy and Tom are doing a Mud Run. I'll try to get lots of good pics.

Take care,
Christy

Scheduling Woes

So, two weeks ago today, I called to get Harlie's next heart catheterization scheduled in DC.

Her last heart surgery was in June 2009, and I was told that she would need another cath in about six months. Well, that put us in December, when she was getting her second bone graft jaw reconstruction. So, she didn't get the cath and I knew it was okay to put it off a few months. Well, since her bone infection happened, it had to be put off again. They said no cath until she was fully recovered from her infection.

Even though she appears to be doing just fine in the cardiac area, I would rather not put off the cath anymore. We are getting close to a whole year since her surgery and still no cath. So, I checked with her infectious disease docs in Norfolk and her cardiologist in DC and all agree that she has been on antibiotic treatment long enough to make them feel comfortable with going forward with a heart cath.

So, on a Thursday, I called the cardiac cath scheduler. Her voice mail says that "your call will be returned within the next 24 to 48 hours."

Several days went by with no return call. So, on Tuesday I called again and got someone who told me the scheduler was out of town till Thursday. That would make one week since my first call. Great.

But, just out of curiosity, if you were going to be out of the office for a few days - and NO ONE else could do your work for you (like schedule a heart cath, for example -that is really great that she has job security, though. Really, good for her!) wouldn't you take the time to change your message from "I'll call you back within 24-48 hours" to I'll be gone until whenever and will call you back within so many days after that? I'm just saying.

So, anyway, she calls me on Friday and leaves a message with a question. Not to pick on her - but her question was "do you want to schedule a heart cath or heart surgery?" Hmmmm. Let me think about this for a minute. I called the cardiac catheterization scheduler. If I wanted to schedule heart surgery, I would have probably called someone else. And does she ask every person who calls her to schedule a heart cath if they, indeed, do want a heart cath? Again, I'm just saying.

So, I call her back the same day, and leave a message with the answer.

Today is Thursday, and still no phone call. So, I called again and heard her message that says I'll get a return phone call within 24 to 48 hours.

I have to say that this is one of the most difficult appointments I've tried to make. Back in January/February, I tried to schedule it and got the same "speedy" response. We played telephone tag a couple of times, and then February happened, and I just stopped calling.

The reason why it's bugging me is that I don't want to have to do this! I don't want to go through another heart cath and then another heart surgery! The logistics of getting to/from DC, should Tom go, should he not go, will we stay overnight, who will be with the boys, when will this all take place, and HOW SCARED AM I GOING TO BE SITTING THERE IN THE WAITING ROOM AFTER WHAT HAPPENED IN FEBRUARY?!?!!

So, add to all that stress and worry, having to call, write down when I called, keep track of how long its been since I called, so that I can then call again, and I just get easily ticked. And annoyed. I don't know if this heart cath will be in two weeks or two months. Not to mention when her heart surgery will be.

And I have a life to live, people! I want to know if I can train for a marathon, a half-marathon or nothing at all. And I don't like to make plans - but this is different. I feel like my life is on hold for something like this.

So, to make scheduling the appointment difficult???? Well, that just seems cruel, don't you think? Cruel to us parents of children with more medical issues than I can list in under 500 words. I might be exaggerating, but I think you get my point. I really need to reserve my patience for feeding therapy and potty training. And Cooper. Especially Cooper. God love'm.

The message I left today was nice, even though I was kinda mad. So, hopefully I'll hear back soon. Please keep your fingers crossed for me, okay?

Thanks!
Christy

Feeding update

We had feeding therapy on Thursday. It went well, I think.

I can't believe how willing and accepting Harlie is to her feedings. Getting her to take a drink is rarely difficult. Our struggles are with her belly - and that it just can't handle the volume. Well, that's our guess, anyway. The GI area of the body is a complete mystery.

Yes, stuff goes in, stuff comes out and when it works that's great. But when it doesn't, well, good luck!

I still can't wrap my head around why we've always had such an issue with volume control. To watch Cooper down an eight ounce bottle in mere minutes proves my point. Harlie has NEVER been able to have an 8 ounce feeding. She's three and a half and is getting just five ounces. And still throwing up daily - after reflux meds and surgical intervention!

We've determined that she's more likely to keep more down if we give her half a feeding orally (over 30 minutes) and then finish the feeding through the tube and feeding pump over the next 30 minutes.

So, on Thursday, Allison (her therapist) fed her an ounce of pureed sweet potatoes and two ounces of Pediasure. She did beautifully. But then threw up with only 4 bites/sips left. Ugh. But at least she got to see what I was talking about. After she threw up a good amount, she went right back to feeding and finished it. With no complaint.

Seriously? Who throws up and then goes right back to eating/drinking what they just threw up with NO complaints??? She is really something.

Well, the big news is that Allison said that she is going to refer her to the inpatient feeding program.

This means that she will send Harlie's name to the team for consideration for admission to the intensive feeding program. We have our meeting with the whole team on May 11th. So, I'll learn more that day about what they think. In the meantime, I guess they will talk with Allison and review her file or something to see if they think she's ready, too.

Basically, the intensive feeding program lasts 6-8 weeks. It is an all day program (8am - 3pm) where the child stays there for all meals, Monday through Friday. Yeah, it's intense, alright!

Allison said that they will be able to try all different kinds of food/beverage combinations/frequencies to figure out what works best for her. With as willing and cooperative as she is, we just can't let this opportunity slip by.

I know there is a waiting list to get a spot. But I don't know how long it is. Allison said that summer is a busy time since parents don't want their school-aged children to miss school.

So, we'll see.

It is pretty weird to think how far we've come. Admission into this program has been like a pipe dream for us. I would have never guessed that we would be here now. I don't want to get ahead of myself. We aren't there yet. But, this is certainly the farthest we've ever come!

Even though I am not a planner - I am aching to know when things are going to happen.

I called to get her next heart catheterization scheduled. Hopefully I will hear back on Monday. Once she has her heart cath then they will tell me when her next heart surgery will be. I just hope we can pull all this off without the times conflicting. And I want to give her enough time to recover before throwing her into the next thing. Especially something as intensive as this feeding program.

I would have scheduled this heart cath a lot sooner if I could have. But, with her bone infection, we had to wait until she was at least half way through the antibiotic treatment. More on that later.

Having things this big hanging out there is very unsettling. I will feel so much better once we have them on the books so I can start to "prepare" myself. Thinking about heart surgery again - after what happened in February - makes me shudder. But, avoiding it would only make it worse.

That's it for now. Thanks for reading!
~Christy

Not a dull moment...

Where to start? I got a call tonight from Harlie's cardiologist in DC. I could tell immediately that something was amiss.

Basically, they had a conference this afternoon to discuss this week's cases. They went over all the data on Harlie (her last two heart caths - August 2008 and last week's - her last two echos - a few months ago and I don't remember when). In short, the images do not answer their concerns, and they need more info before going in for surgery.

A long time ago - I don't remember when, they discovered that Harlie also has subaortic stenosis. Note: if you check out the link about subaortic stenosis the picture of the heart is definitely NOT Harlie's. Her's is all crazy. Anyway, it's my understanding that they need to know more about the degree and severity of her stenosis before going in for surgery so they can fix it while he's in there, or not, depending on how bad it is. Doing the Fontan as scheduled without fixing the stenosis if it needs it, would be bad. Very bad. So, no argument from me! Do what you gotta do to give Harlie the best results possible.

So, we will leave Wednesday night (instead of Tuesday night) and on Thursday she will have another heart cath (her 5th) (I think they want to try to get access through her subclavian vein since the doctor couldn't for her most recent heart cath) and they will do a transesophageal echocardiogram or TEE for short. Instead of doing the ultrasound on top of her chest, they will do it by putting the instrument down her esophagus so they can see the heart without the bone, etc. in the way.

Hopefully between these two procedures they will have the information they need to make a decision - and fast. The doctor said that she would see if the surgeon would then be willing to do the surgery on Friday or early next week. I suppose there is a possibility that the information could tell them to wait to do the surgery altogether - but I'm thinking that would be worst case (and I'm not going to think about that).

At first when she called, I was afraid that something happened with scheduling, or the surgeon and my heart was in my chest waiting for her to explain what was going on. But to find out that the surgery is being postponed because of a questionable issue with her heart just makes me sick. I am just going to assume that she isn't sugar-coating it by telling me that the images aren't clear. Regardless, they are going to do more studies to get the answer and we'll know on Thursday.

I guess it buys us another day to pack and get everything together, although now I have no idea if we're coming home on Friday or well, when? Eh, details, schmetails. I live life by the seat of my pants. Plans? Who needs plans? I don't need no stinkin' plans!

Have a good night!
~Christy

Heart Cath Results

Harlie's heart cath was today. It went well. Her doctor came out after it was done and said, "she just got a little more complicated". She never ceases to amaze me. This is her 4th cath and each time gaining access to her heart has gotten more difficult. I won't bore you with the medical jargon (sometimes I think I do that - but the reason I do is because this is my journal, and I need to know that kind of detail).

But, they insert a catheter into a vein (takes the blood to the heart) and as they go through the heart they inject dye and take pictures and measure the pressures and oxygen saturations, etc. At first they went through her femoral veins. But they have since scarred down, and cannot be used again. Then they went through her subclavian veins (under your collar bone). But, they were not usable today. I say "today" because he said that maybe next time he could get it to work, but today it just wasn't going that way. Her pathways to her heart are not exactly normal I believe. Anyway, they have to get an arterial line anyway (standard for a heart cath) so he had to go in that way, through the arterial line. Veins take the blood to the heart, arteries carry the blood away from the heart. So, he basically had to go against the flow and backwards into her heart. So, gaining access to her heart is getting pretty tricky. I'm sure this is normal for kids like her that have to have a lot of these type of procedures. But, for some reason, it just kills me to think that major veins are damaged to this extent. She's only 2 years old!

There is another procedure that she will have to have about a year after this next heart surgery. And he said that if they have the same problem, they can go through her liver. Her liver! Ugh. But, we'll have to cross that bridge later.

Anyway, the good news is that everything looked great and she is all set for surgery (the Fontan) on April 16th.

I'm not really sure what happened after they took her away, but her hair came back a tangled, matted mess. I can only assume that she was fighting something they were doing to her. The nurse did say that she was strong and I wondered how she would know that. Anyway, here's what she looked like today (the gauze patches are from where they tried to gain access through her subclavian veins)...

I think she was trying to smile for the camera in this one.

Brandy and Harlie.

She came home wearing a holter monitor to record her heart beats for 24 hours. Just gathering some data for her surgery.

Well, it's late. Time to go to bed.

Heart Cath tomorrow

We're trying it again... her heart cath is tomorrow (Tuesday) at MCV. We have to be there at 7am. Hopefully everything will go just great and we didn't rush it after pneumonia. I'm a tad bit nervous, though. We've been monitoring her sats and for the last few days (since Wednesday of last week) her sats have been staying in the 80's. Which is good (for her). So, just to make myself feel better, we check them again today. And they hung out in the 70's. What?!?!? So, we hook her up to the O2 and watch. But, since she's feeling so much better - she wants to get up and play. And you simply can't monitor her sats (which has to be done on her toe) while she's up and walking around playing. After seeing them back up to baseline for a few days, we took off the probe and let her go. Now today, the day before her cath, her sats are low. But, she seems to feel great.

In fact, we had speech therapy today and our speech therapist said that Harlie was the most vocal she's ever heard! And she simply can't make sound if she's breathing hard or feels oxygen deprived. So, I don't know what that means. If I go by her, she's great. If I go by the monitor, she's not so great.

I guess we'll just see what happens tomorrow and go over it with them. I hope they think she's fine, because this cath and surgery looming over our heads - and all the rescheduling - is really starting to stress me out. I just don't want to have to think about it anymore. I feel like I'm going over every single detail to the point where my head hurts. How are her respirations? What do her lungs sound like? What are her sats and how low should I let them get before I turn on the O2? Is it a trach problem? Is it a lung problem? Is it a heart problem? Sometimes I just want to be her mom. That's it. Just a mom.

Well, wish us luck and I'll let you know how things go tomorrow...
Thanks,
Christy

Heart Surgery Rescheduled

It's official. Everything's been rescheduled. I was really hoping that she would make some miraculous turn around and that she could still have her heart cath so we could keep the same schedule. So, I called the doctor who is doing the heart cath and discussed her issues with him.

She is still febrile - for a full 7 days now. And she just can't have a heart cath with a fever. And it wouldn't give us accurate results with her being sick anyway, so we really had no choice but to reschedule. Whatever the cause of the fever, when she's sick (and it could be just some normal, common bug) her heart just can't compensate. Her lungs sound clear - yet her oxygen saturation levels are all over the place. From the 60s to the 70s (keep in mind a "normal" saturation of someone with a normal heart would be close to 100) and only higher when on supplemental oxygen (which she's on now all the time). But even with the oxygen, her sats are very hard to maintain above the 70s. One second she's on a half a liter, the next we have to turn it up to 1.5 liters. It's very annoying. Not to mention a tad bit unsettling as it probably means that she is getting to the point where she needs this surgery. Well, she's always needed it, but I mean that she needs it - soon. Don't get me wrong - it isn't an urgent situation - it just feels weird to know that her heart needs it sooner rather than later. It's hard to describe.

Anyway, so her heart cath was changed from tomorrow to March 31st and her heart surgery changed from April 2nd to April 16th. So, all in all, not too bad. I was really dreading rescheduling it since I feel like we had made plans and I was getting all geared up for it. But, only a 2-week change isn't bad. And now that means she'll be home for Easter, so that's a bonus.

Now to get her well...

So, Cooper got his ear tubes today. All went well. It was actually quite funny. The nurses were being all "sensitive" to me about it and I kept thinking, "what's all the fuss about?" One said something like, "tubes are a simple, quick procedure - although I know it's a big deal to you." HAH! If only!!!! And if I could be critical for just a second - a nurse called me a few days ago to do a pre-op thing over the phone. It took about 15 minutes - not really a big deal. But then this morning during all the MANY check-ins with various levels of the medical profession - I had to answer the exact same questions I did last week! In fact, the nurse had the pre-op form IN FRONT OF HER! And she read every single question to me to "verify" the answers. Now, I ask you - WHY call me ahead of time - keep me on the phone for 15 minutes - if you are just going to do it AGAIN that day??? I understand the need for accuracy - but frankly, I'd like to have my first 15 minutes back. I'm starting to think I spend way too much time in hospitals and doctor's offices...

Anyway, he was NOT a happy camper in recovery. I've never seen him so upset. Poor little guy. But after a good nap and lots of snuggle time, he was back to his happy self.

Well, that's it for tonight.
~Christy