CT Scan Results

I can't believe I didn't know that her doctor called me on Friday and left a message!  I just listened to it and he said that they reviewed her CT scan, and it did NOT show any arteriovenous malformations.  So, no collaterals.  Which means her lung is just not working sufficiently anymore.  Crap.

He said he would call me again on Monday to discuss it.  So, I'll know more tomorrow.  

Crap.  Crap.  Crap.

I'm going to go cry now.  Thank you for all your thoughts and comments regarding my last post.  You are the best.

Much love,
Christy xo

Lung Details

I've been feeling blue these last few days.  And usually I don't want to write when I feel that way.  But, I'm hoping that writing about it will help me shake it.

Harlie had her CT scan on Friday.  The night before I told her that she had a doctor's appointment in the morning and that we would have to wake up early.  I don't normally tell her about just regular old appointments.  She must have noticed the difference and sensed that this was a bigger deal.  So, she started to cry - a real sad cry.  Ugh.  I told her that it wasn't that big of a deal and that I was going to be with her the whole time and that it would be over quick.  No over night, I said.  She cried for about ten minutes and signed "scared."  There are times I'm not that sympathetic, and tough love is the way to go.  But, this was not one of those times.  It kills me that she has to be scared so much.  And for darn good reason, too.  But, she eventually believed me, I suppose and went to sleep with no tears.

She's usually a BEAR to wake up.  I have often said that I have no idea what we're going to do when she is a teenager, because that girl will sleep past 10 am every day if we let her.  I got up at 4:15 am and got myself ready.  Then I woke her at 5:15.  I went in her room, put in her hearing aid and whispered, "It's time to wake up" in her ear.  And can you believe that girl sat right up?!  That is a FIRST for sure!  I guess telling her the night before was the right way to go!

Anyway, we left the house right on time (another amazing feat, if you know me) at 5:45 am and arrived a few minutes early for check in.  See?  I just haven't been myself, lately!

Then we hung out in the waiting room... for a long while.

She really cracks me up.  Despite the tears the night before, she was one happy little girl!

I suppose that the anesthesiologist looked at her chart before calling her back and ended up spending more time than originally planned going over her history.  I'd love to be a fly on the wall when a new doc clicks on her name.  Anyway, we talked and he asked the usual questions.  Thank God she has no issues with anesthesia.  Can you imagine?

They were so kind.  They wanted to let her fall asleep first before putting in the IV.  So thankful!  The reason she had to have anesthesia is because it was a CT scan with contrast (which requires an IV) and she has to lay really still for several minutes.  Considering there's contrast involved, it's not worth the risk of her moving.  I believe they can only give you so much contrast in a specific amount of time.

All went fine, of course.  I wasn't worried.  She woke up a little mad, though.  The nurse didn't apply pressure to her IV site long enough to stop the bleeding, so she bled through her dress.  That was very upsetting to her.  Blood got all over her other hand and she kind of freaked out.  Of course I had extra pants, but no top.

We left the hospital around 9:30 am.  As we were walking out, I saw Harlie's nutritionist from when she was a baby.  It's always good to see her.  We chatted a bit.  And then Dr. Williams came up to say hello.  He was one of her PICU docs from back in the fall when she had the infection in her jaw.  He didn't have to stop.  It wasn't like we passed each other and he saw that I saw him, so he felt like he had to stop.  I didn't see him and he could have walked right on past without me being the wiser.  But, he stopped.  Isn't that so nice?  He asked how she was doing and what was going on.  I gave him a very brief update.  It is very nice to see friendly faces there.  And I always find myself surprised that people remember us.  But, I'm told Harlie's pretty hard to forget.  It's so funny what I find to be normal.  And to others, she's so unusual.

Anyway, I took her straight to Target to get something for being so brave.  If she could eat (or liked to) I would take her for ice cream.  Oh well.

I don't know when I'll hear the results of the CT scan.  I hope this week.  I hope that it will tell us something.  I don't think I ever told you about her appointment with her pulmonologist a few weeks ago.

Here's the recap.  We saw him.  He had already spoken with her cardiologist (Dr. G) and the head of the radiology department about what tests she should have.  I love it when they come in prepared.  He said that the best test would be a cardiac MRI.  Of course she can't have an MRI because she has a pacemaker.  No magnets can be near her.  So, no MRI.  I knew that was going to bite her in the butt one day.  We chatted some more and I wanted some clarification on what I was thinking.  I've been asked questions by family and friends and I wanted accurate answers to give them.

1.  Are you happy that it's not her heart that's causing her oxygen requirement?  No.  You need both organs to live.  They are both important.  And it seems that there are more options when it comes to a heart.  Plus, one can get a heart transplant and go on to live a long, good life.  It is not the same with the lungs.  How many lung surgeries have you heard of?

2.  Can she have a lung transplant?  No.  A lung transplant is trading one disease for another.  It isn't a cure - ever.  And it only buys you time.  Like five years.  If we have to consider a lung transplant, we will be very sad people.  That is a terrible position to be in.  I really can't think about it.

3.  If her lungs just don't work right anymore, is there anything that can be done to "fix" them?  No.  Once all the parts in there stop working, they are done.  No fixes.  Refer back to question #1.

4.  Can she live with just one lung?  Yes.  You can live with one lung.  Clearly her heart makes it more complicated.  But, it is "believed" that her remaining good lung could handle the blood flow.  I don't think there is another person walking this earth like Harlie, so it's hard to say for sure.  The obvious negative with relying on just one lung, is that you only have that one lung.  So, when she gets a respiratory illness, it will affect her greatly.  And her physical activities have to be adjusted accordingly, meaning no contact sports or being on the top of the cheer leading pyramid.  Those are his words, not mine.   Because I always assumed those were out, even with both of her lungs.  She can't even walk around the block.  I love how both of her doctors went straight to, "Well, she'll never run a marathon."  And that's said like who the hell wants to do that anyway?  

Um, me?

So, no contact sports - fine.  No cheer leading - fine.  I don't want her to wear make up anyway.  I hate that they have little girls do that.  No running?  Ugh.  Honestly, I knew that all along.  That's no surprise.  Heck, she can't even walk around Target or the grocery store.  I don't know what we're going to do when I can't put her in the cart.  Anyway, it does make me sad that she will have all these "nos" and "can'ts" in her life.  As parents aren't we supposed to tell our kids they can do anything they set their mind to?

And the worst thing about having one lung?  If there's trauma (like in the activities mentioned earlier, or a car accident - which would be the most likely for her) and her lung collapses or is punctured, she's done.  Meaning death.

While discussing what tests we should run to confirm that her right lung has been damaged beyond repair, Jim came in to test her CO2 levels.  The two of them started talking about how a certain test would be done with a patient with a trach and Jim asked Dr. Schmidt, "So, what are you going to do?"  And Dr. Schmidt said, "Whatever Mom tells me to do."

I had to laugh!  I love him!  I immediately thought of this thing on Facebook that was going around.  It said something like "You know you're a parent of a medically fragile child when..."  And one was "when you tell the doctor what to do."  Too funny.  Another one was "when you take care of other things before you take your child to the ER."  I told Dr. Schmidt about it and said I may or may not have taken a TRX class at the gym before taking Harlie to the ER.  We had a good chuckle.  Oh, the things I find amusing....

Anyway, he said he would have to do some research and call me later.  Which he did.  He spent a lot of time going over her history, and called me the next day.  He said that they want to rule out a collateral vessel(s) before doing anything else.  I suppose that could be a cause for her poor sats coming out of that lung.  He also said that after talking with some other doctors, they are all in agreement that they want to try to save this lung.

The first test was this CT scan with contrast.  We'll see what information it provides and then go from there.  In discussing the kinds of tests she needs, Dr. Schmidt said, "Ideally she would need a _______ (I can't remember which test it was) and she would need to hold her breath like 20 times in a 45 minute time period (or something like that).  I looked at him and said, "Let me tell you what would be ideal."  He totally got my humor.  We had another good chuckle.  Then I told him that I don't think she knows how to hold her breath.  So, that test is out for now.

So, in summary, here is where we are with her lungs...

As she is right now, with a full, good left lung and one remaining lobe "limping" on the right:

• She needs oxygen.  I can't believe it's been almost 16 months of oxygen 24/7.  I just can't believe it.  
• She has a hard time trying to speak.  When you talk, you hold your breath.  She can only pronounce a few syllables before she has to take a breath.  She just doesn't have the lung capacity to hold enough air.
• She can NOT tolerate any exercise.  And I don't mean exercise like you go to the gym to do.  I mean just normal, walking around kind of exercise.  A couple of weekends ago we had a friend over and his kids.  Harlie wanted to play in the backyard with them and so I let her come off the oxygen for a bit.  After some walking around I could hear how hard she was breathing and saw how blue her nails were.  I checked her sats, and they were 71.  That's just terrible.  Terrible.  She can't even play.  Kills me. 
• Last night (really, this morning) she was awake.  Maybe she had a bad dream.  Tom said he had to get up to drain the water from her tubing (condensation from the humidification) and she signed "scared" to him.  A little while later, it had to be drained again, so I got up.  This was about 4 am this morning.  She was still awake.  She signed "potty" and disconnected herself from the oxygen and the pulse ox and went in the the bathroom.  After she was done she signed "Mommy's room" and went in our bed.  She has never been able to sleep in our bed.  Never.  After a minute of letting her lay there, I held her tubing up (showing her it needs to be connected) and she sat up.  I carried her to her bed.  And when I hooked her back up, her sats were 77.  In a matter of five minutes, her sats went from the low 90s (on oxygen) to 77 (no oxygen) and she barely walked at all.  I carried her back, even!  

I'm hoping that it's something easy and simple (like collaterals) causing her low sats.  But, clearly, I would have to say that's unlikely.  I am going to continue to hope.  But, I know in my heart that we might seriously be disappointed.

My thoughts have been heavy these last few months (or 16).  I don't want her to lose this lung.  But I can also see that as it is, it isn't doing her much good.  The whole thing just makes me sad.  She's seven.  How many lives does this girl have?  I can only surmise that if she has to have that lung removed, that living with her one lung must, in some way, reduce her life expectancy.  It has to increase the risks in every way - infection, illness, collapse from anesthesia, etc.

Obviously I can't let my thoughts go there.  But, sometimes I can't help it.  I try so hard not to worry.  But, what mother doesn't?  And these worries aren't crazy, out-of-the-realm-of-possibility worries.  They are very real.

And when I can't sleep, I start to think of living with this oxygen.  Will we know more about what to do before summer?  I can only assume that she'll still be on oxygen when the pool opens.  What then?  Can I let her go in the water with oxygen?  I think the answer is yes.  But what about the tubing?  That can't be safe for other kids.  What if they don't let me put her in the water with the tubing?  How can I possibly NOT let her go in the pool?  Seriously, I can't even think about it.

The kicker to my blues yesterday (it was a bad day) was that we couldn't take her to the movies.  Tom took the boys and I stayed home with her.  She was pretty junky and required a lot of suctioning yesterday.  There's no way I can take her to the movie theater, on a rainy Saturday, when I have to suction her a lot.  While she would be fine, the suction machine would be a major distraction (annoyance) to other movie goers.  The fact that she has to miss out on so many normal activities (and knows about it) just makes me mad.

Anyway, I have to stop now.  I hate complaining about this stuff.  It doesn't do anyone any good.  And I think I might feel a bit better now that I've gotten all that off my chest.  I'm sorry if you now feel worse!!

I will let you know what I find out about the CT scan as soon as I hear.  As always, thank you for reading and thinking about our sweet girl.  You get me through these tough times.

Much love,
Christy xo

Quick Update

I have so much to share with you.  Here's a snapshot of what's been going on.

We had Harlie's appointment with her pulmonologist on the 13th.  I will go into more detail very soon.

The Deep Run Marathon Dance was the 14th and 15th.  It was awesome.  What an amazing experience!  The whole thing was incredibly impressive.  I really want to tell you all about it (and show you pictures and videos) but all that stuff is on my other computer, so I will have to save that update for later.

I spent last week in bed, sick with some horrible flu-like virus.  It's pretty much gone now.  While I feel SO much better, I can tell that I am not fully back to 100%.  My lungs and exercise endurance is dragging a bit behind.  Which is perfect timing with the Ukrop's 10k coming up on Saturday.   I don't know why I signed up.  No more races after this one and my half at the end of April.  None.  At least for a long while.

Now that I am better, Tom is sick.  It's much worse when he is sick, since he is the one that provides dinner for the family.  I am going to try really hard to make dinner tomorrow night to give him a break.  I know that sentence makes me sound like a complete idiot.  But, as I've had to learn so much in certain areas (almost every major medical specialty) some basic brain function had to be sacrificed.  The cooking was the first to go.  Poor Tom.

Cooper started soccer again and is loving it.  Apparently the last few months of growth and maturity made a difference, because Tom said he could immediately see that Cooper was much more into it than in the fall.  I missed all the action because I was sick.  But, he scored two goals in his very first game!  What a turn around!  I also signed him up for basketball through his preschool.  I love that they offer programs like that.  He stays for two hours one day a week to play there.  Awesome.  He liked his first class earlier this week.  We'll see how it goes.  It is amazing how incredibly different each parenting experience is/has been for each of our kids.  Murphy has NO interest, Harlie is unable and Cooper is ALL in.  It's a good thing I'm so flexible...

I want to share a video I have of Harlie tubing herself her dinner.  But, it's on my other computer.  So, I will have to save that post for later, too.  If you're on Facebook, you might have already seen it.

My Mom had her lumpectomy and all went well, I think.  She has another appointment next week and we'll know more then about the next steps (radiation, etc.).  But she isn't in any pain and she is in good spirits.

My younger brother, Cabell and his fiance are expecting their first baby in August.  They just found out they are having a boy!  We are all excited about that.

Now that the Deep Run Marathon Dance is behind us, we are setting our sights on the We Heart Harlie and Friends event May 3rd.  It will be here before we know it!  Here is the flyer...

Registration for the 5k and Kid's Fun Run is open and new shirts are for sale.

We are going to have Women's shirts in Tahiti Blue, Purple, and Vintage Black, Men's in Vintage Black and Envy (green) and Kid's in Turquoise.  Pictures of the shirts will be up on the website soon.  If you have come in the past, please note the new location.  It is going to be at Deep Run High School this year (instead of Glen Allen Elementary).  We outgrew the space at Glen Allen, which is a great problem to have!

I can't remember what I've told you about We Heart Harlie, but it has grown into a foundation!  It is now We Heart Harlie and Friends and Lynda has been working with an attorney and CPA to get all the paperwork and applications done to make it be an official foundation with a 501(3)(c) status!  It is so exciting!  Here is the new website, which is in its beginning stages as Lynda is adding to it and adjusting it as necessary.

We are so excited to be able to help more families now.  Each year we will select different families to help.  We have a board, and it is almost full.  If you would be interested in being on the board, please contact us and let us know.  And let us know if you, or someone you know, would be interested in donating a product or service for the raffle.  We are so grateful for every donation!

We are hoping to do some more (and different) fundraisers for the foundation throughout the year.  We would like to do an adult only silent auction with food and drinks.  And last night Cheeburger Cheeburger had a fundraiser night where they donated a percentage of the proceeds to We Heart Harlie and Friends. How cool is that?! Tom and I ventured out and took the kids.  It was so much fun!  There were so many Glen Allen Elementary teachers there!  It is so sad that we don't get to see them since Harlie is still on home bound.  But it made seeming them out (and wearing their We Heart Harlie shirts) even better.

I have so much more to share!  But, I have to stop for now.  Harlie has a CT scan scheduled for Friday.  I want to share what I know about that so far.  So, I am hoping to update again tomorrow or Thursday.

Thanks for checking in!
Much love,
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

Wednesday Update

Whew!  Lots to cover...

Cultures from the abscess have grown nothing.  That doesn't mean that there aren't any bugs.  Clearly, something was growing.  But, since she was already on antibiotics for two weeks, it skewed the results.

I'm finding it hard to organize my thoughts to make all of this fairly simple to read and to understand.

Docs Involved in Harlie's Care:

Plastic Surgery
General Pediatrics
Infectious Diseases
Pulmonary
Cardiology (limited, but here should we need him)

Some of these specialties have several people - like an attending, fellow and resident.  Throw in that the weekend teams switched on Monday to new people.  So, the number of people I've spoken to while here is quite high.  The number of times I've repeated myself and answered the same questions is also quite high.

So, we had a plan over the weekend.  We were all on the same page.  Then the teams switched and we had to start all over again.  The plan was that she would get a PICC line (IV access you can go home with) on Tuesday and would remain on IV antibiotics for several weeks.  What meds and the time on them was up in the air until the cultures came back.

On Monday, I spoke with the ID docs (the resident and fellow) in the morning.  Plan still the same.  But later that day she lost her IV.  The nurses tried twice to get another one in, but Harlie fought so hard that they couldn't do it.  Then they gave her some Versed to calm her down and tried again.  Still couldn't get one in.  At that point, they were done.  They weren't going to try anymore.  Which is good, because that meant I didn't have to fight that fight.  It's very hard to know what to do as a parent - on one hand I want to say, "stop, that's enough" and on the other hand, I want her to get those IV meds!  Both are important.

They called ID and informed them of the lack of IV access.  By this point, she had missed a dose of each.  The attending ID doc switched her IV meds to g-tube meds (Augmentin).  Then, an intern (or a resident?) came to tell me that the plan changed.  They were just going to leave her on Augmentin and were not going to give her a PICC line.  This decision was based on the fact that the culture was coming up empty.

I had not ever met the attending - so I asked to speak to him.  He and the fellow came to talk to me and we went over some things.  He explained that the culture didn't grow anything, so it was probably a superficial infection, which wouldn't require IV meds.

I said I thought that would be under-treating her.  The culture not growing anything doesn't mean anything to me.  Meaning, that I don't care - we should base our decisions on the whole puzzle, not just that one piece.  Plus, if they are wrong, and the infection comes back, then it's Harlie that pays the price. And it would be a hefty one.  And they are not sending me home with a kid who doesn't give me any indicators that something's amiss (she doesn't get fevers, she doesn't complain about pain and she is fine one night and has an abscess the next morning).  AND, let's not forget that we are trying to buy time with this hardware in place so we can leave it in for as long as possible.

Worth the risk?

I don't think so.  So, I told him that he needed to discuss it with Dr. Rhodes since she is the only one who's seen the infection on the inside.  If she was fine with it, then I would be, too.  Don't get me wrong, I would love it if it meant Harlie didn't need to get a PICC line.  But, my gut told me that would backfire.  

The next thing I knew, Dr. Rhodes came by.  She said, "The plan is for her to get a PICC line on Tuesday."  Too funny.  But here's the not funny part... she said that she needs to look at her wound and change her dressing at least every other day.  Which, right now, means sedation, which she said she cannot do as an outpatient.  That means that she needs to stay inpatient until the surgeon can close her wound.  She said it could take up to two weeks.  Gulp.

Our nurse that day was standing with us when she told me that and I was speechless.  She looked at me and said, "I'll move you into the corner space."  The corner space here is the only room in the unit.  It has walls and a door, and the only window in the unit.  We were moved a few hours later.  And being in this room does make being here SO much better.

That night we had a visitor...

Donna and Harlie

My friend Donna came by and we had dinner together.  After she left, Harlie started to have some respiratory distress.  She was working really hard to breathe and her oxygen requirement went up to 75%.  For the next couple of hours they tried different things to help her - chest PT, bagging her (using an ambu bag to force air into her lungs), lots of suctioning, and breathing treatments.  They called the PICU charge nurse over so she was aware of what was going on, just in case they had to send her to the PICU.  After all that working, they finally got her straight and back down to 50% oxygen.  It was late, but her night nurse was good and told me to go home so I could get some rest.

Tuesday, August 27

She got the PICC line in the morning.  When she was transported into Interventional Radiology, she looked really scared.  Everyone was wearing scrubs and masks.  She started to cry and tried so hard to hold back the tears.  I told her it would be okay and that she would go to sleep and she would be back in her room soon.  You should have seen how brave she was!  They let me transfer her to the table and let me stay with her until she fell asleep. She is such a good girl.  Really.

Smiling for me, despite being scared.

They asked me about a preference for a PICC line placement.  I asked them to try her left arm first.  Whenever she has an IV in an arm, she acts as if it is broken and refuses to use it.  Or she tries to hide it from people so they can't mess with it.  And with her starting school soon (hopefully) I want her to be able to write with her right hand.

The surgeon went into IR and cleaned her wound and changed her dressing.  She removed the drain line that was in there, so that's a good sign.  She said the site looked clean.  She packed it with a dressing that changes color when it touches bacteria.  It was white when she got back to her room and by that night, it was purple.

The problem is that she would rather leave the site exposed to air - but due to it being located between her drool and trach secretions, that's not an option.  And she said you don't close a wound that has an infection.  But, in her case, again because of it's location, she's going to have to close it.  Which is why she's playing it safe and taking all these measures to make sure she does everything she can to keep this infection from growing.

While Harlie was in IR getting all that done, I returned to her room.  After I got there I realized I should have gone outside for a walk or something.  But, I wanted to be close just in case they called me or something.  So, I started to try to get somethings done.  One thing on my list was to let Harlie's hearing impaired teacher know that we have to cancel our session for this week.  I sent her a text and she replied right back that she was at the hospital!  So she came up to visit.  It just so happened that she was here to observe a cochlear implant surgery and baha surgery.  How crazy is that?  Since Harlie wasn't here when she came up, she said she was going to come back that night to spend some time with her.  How awesome is she?!  I've always known we were lucky to have her!

She returned that night around 6:30 or so.  And her and her husband stayed with Harlie while I went with Tom, his mom and the boys to dinner.  A few hours earlier I started to feel bad.  By dinner I was feeling very crummy.  I know have a cold.  Crap.  We went back to the hospital and Cheryl and her husband were still there!  She is so good to us!  We spent a little time with Harlie and by 8:30 or so, she was ready to go to sleep.  I felt so bad, so I went home too, so I could get better sleep.

Wednesday, August 28

I woke up this morning and felt awful.  I was slow moving to get to the hospital.  Then the traffic was bad and it seemed to take forever to get to the hospital and park!  So, I missed rounds.  I felt so guilty.  But, I was told that she woke up at 6am (so unusual for her - she's such a late sleeper) and told her nurse that she wanted her hearing aids.  They found the container and handed it to her.  Harlie took it and put the battery in, closed the door and put it in herself!  She is so funny!  Then she took her BAHA, put the battery in, closed the door and lifted her hair up so they could click it on (she can't do that yet).  They tried, but didn't know how hard to push and were uncomfortable trying to do it.  So they told her I would do it when I got here.  I love that she was able to communicate with them.

Today we had more visitors.  Lynda brought her girls and they were hoping to paint Harlie's nails.  But she said no.  Then Sally and her kids came.  Her daughter Annabelle brought a Lots O Hugging bear (from Toy Story 3) for Harlie.  Oh, and Lynda brought her a tiara so she would give back Jessica's.

Annabelle and Harlie.

These are the worst pics!  I think it might be time to replace my cell phone...

Charlie, Samantha, Jessica, Harlie and Annabelle.

The kids and the moms.

We could never have done this in a curtained area!  I am so thankful they moved us to this room!  I hope, despite all the crap Harlie has to deal with, that she knows how much she is loved.  She was surrounded by lots of laughter today - and laughter is healing, right?

Later on in the day my niece and nephew, Maggie and Charlie, came by to visit.  But Harlie fell asleep while they were here and I didn't get their picture.  Darn it!

You might remember me mentioning that Harlie had a CT scan of her spine coming up.  Well, it was scheduled for Friday.  They worked it in for today, just to get it over with.  So we went down for that.  She looked scared again on the way there.  I told her it was a CT scan and it was the big donut and she would remember it when she saw it.  As soon as we walked into the room, her face lightened up.  It was as if she thought, "Oh, I got this."  We had the same tech help us with this scan as we did on Friday when we got here.  It's so funny to get to know so many people so fast when you're in the hospital.

I don't know how she can be so happy.  But I love it.

Oh, I forgot to mention the chest x-rays... After all the respiratory distress on Monday night, they got a chest x-ray.  It showed pulmonary edema.  I think this is good (versus having pneumonia) because it is treatable with Lasix (a diuretic to help you get rid of the extra fluids).  I've always felt that she was fluid sensitive, meaning that her heart and lungs have a hard time processing an increase in fluids.  And with all the IVs, food and water, plus the constant sedation, it's been too much.  She's been coughing almost non-stop.  So she's been asking to be suctioned non-stop.  This girl keeps me busy!

They also started trying to use a vest today to help loosen up her lungs and make it easier for her to clear her secretions.  I've asked about this device in the past.  If it helps her, I think her doctor would be agreeable to getting one for her at home.

I can't believe how agreeable she was to putting it on!

They have it set on a low setting now, so she can get used to it.  Never having seen it before, it looked pretty darn fast/hard to me!  I really can't believe how well she tolerated it.  They did it for 15 minutes, two times today.

Her coughing continued to get worse throughout the day.  So, they took another x-ray and saw no improvement from Monday night.  I told them that I had just weaned her off Lasix (which she had been on since we were in Boston in July) so maybe she needs a daily dose again.  They agreed and they started it tonight.  She's better already since that dose.

Just in case we were getting bored... When she got off the potty tonight, it was pretty obvious that she has blood in her stool.  Seriously?  You have GOT to be kidding me.

I really, really don't want this to happen here.  Back in February we had an issue with this same problem and it was a nightmare.  And I've seen the doc that we had back then in the hallways this week.  So I bet that means that he's on this week.  Which probably means that if we had to have a consult with GI, he would be the attending.  UGH!  Her nurse took some for culture and a group of residents (I assume) came in to discuss it with me.  I hate everything having to do with GI issues.  We decided not to do anything at this point.  She can't have anything else tonight anyway (because of the sedation in the morning).  And it's too late for an exam, etc.  We are just going to see if the problem continues.

As the day wore on, I felt worse and worse.  I was really hoping I could go home tonight.  Especially since our night nurse is the nurse we had yesterday.  So, she knows Harlie well.  But, Harlie is headed back to the OR in the morning and she is first case.  So they are going to take her early.  And there is no way I could get here that early.  So, I'm just going to sleep here.  It's been such a busy night.  She got a bath and got her hair washed for the first time in almost a week.  They did the vest after 10pm.  And she is finally going to sleep now.  

I have been trying to write this post for days.  I can't begin to tell you how busy our days are.  There are so many interruptions!  On at least four occasions I have started to reply to a message, and was never able to finish typing.  So, if you are waiting on a reply from me - I am so sorry!  Hopefully tomorrow I will be able to get some things done while she's in the OR.  

Okay, I must stop now.  I am super tired.  Thank you so much for all your messages of love and support.  It's probably one of the main reasons why I haven't lost my mind yet.  Although, if things don't turn around soon, it could still happen. 

Much love,

Christy xo 

One week to go...

A week has passed since my last blog post.  For some reason, the words are not coming so easily.

One, I don't feel as mentally healthy as I would like.  In addition to not being able to blog like I would like (my therapy) I've been unable to do anything physical due to my back issues.  Grrr!  More on that later...

Two, I'm in focus mode now.  Which I think is kinda like auto pilot.  I can't believe it, but surgery is just one week from tomorrow (Wednesday).  The boys are headed to Grandma's on Friday and we are headed to Boston on Sunday (pre-op is on Monday).

So, I've had to narrow my focus to just this week.  I went through my "to do" notebook last night (Monday night).  I ended up creating two new lists.  One that has to be done (okay, should have been done) at some point in the near future.  For example, "write thank you notes."  Yes, I still want to thank you.  But, with everything going on this week, that's not going to happen.  Again. I'm really sorry.

And one list of items that MUST be done THIS week.  So far, there are 16 items on my list.  Today I accomplished three of them.  Progress!  Well, that's not totally true.  Not written on my list (but probably should be) is to do something "fun" each day.  Unfortunately, I have nothing planned for tomorrow.  That will have to be done on the fly.

Yesterday we went to the movies to see Monsters University.  Loved it!  And the kids did, too.  Harlie knew we were going in the afternoon, so in the morning she wanted to watch Monsters, Inc.  So cute!  Since it just came out on Saturday, the theater was pretty crowded.  I'm always nervous that we're going to have to suction Harlie during the movie.  We've only taken her to see a few movies and so far we've been lucky.  I've had to suction her before, but it's been during a loud part in the movie and I don't think it was noticeable.   But, yesterday, it was during a more quiet scene.  Crap.  I know some trach moms would argue for taking Harlie out of the theater to suction.  But, when she needs to be suctioned, she can be pretty loud.  And most people don't understand what they're hearing or what's "wrong" with her.  So, I think (in this case especially since we were in the middle of a crowded row) that removing her while she sounded like that would have been a far worse distraction (or annoyance) to others than just taking the five seconds to turn the machine on and get it done.  But, regardless, I still cringed.  I don't want to disturb others, I promise!  But, it is her airway.

And honestly, Cooper was worse.  Every five minutes he was asking me (without using his quiet voice) for "MORE POPCORN, PLEASE!"  I got a large tub for all of us (Terri, Harlie's nurse went with us) and some water cups for the kids to eat popcorn from and Cooper ate popcorn till it was all gone.  It took him most of the movie.  But, the only reason he stopped eating popcorn was because there was none left.  Wow, that kid loves popcorn.  

Looking back, I guess we were a bit of a mess.  Harlie had to go potty (ugh!) near the end of the movie.  Terri took her and on the way out the row, squeezing past people, they knocked over a woman's purse or something so a bunch of stuff fell on the floor (including a bunch of coins).  After Terri used the light from her cell phone to pick it all up, they left without further incident.  When they returned, they did not come back to their seats.  They chose two seats near the door.  Poor Terri.  I'm betting she will cringe the next time I say, "Hey, let's go to the movies!"

Anyway, today was less embarrassing (I hope).  We went to the pool.  Everyone's a loud mess at the pool, so we should be good there.

Tomorrow... I don't know yet.  Thursday, I think we're going to go to Chuck E. Cheeses.  Every time the commercial comes on for that place Harlie goes, "Mama!" points to the TV and signs "car."  She's been doing this for the past year.  She's never been.  So, as much as it pains me to go to that germ ridden place... I think I have to take her.  That is how guilty I feel about what the next six to seven weeks are going to be like for her.  I really think it's the least I could do.  So, we'll take tons of hand sanitizer and hope for the best.  I hope I don't regret it.

Oh! Since I blogged last, I heard from Harlie's pulmonologist about her lung CT scan.  Here's the summary from the radiologist's report:

Somewhat limited examination due to patient's inability to cooperate for high resolution CT. However study actually does show that there is no significant bronchiectasis in this patient. There may be very minimal bronchiectasis in the right lower lobe medially. There does appear to be some degree of chronic lung disease but it is markedly improved compared to 2007. Hyperinflation of the right upper lobe possibly due to some minimal narrowing of the right upper lobe bronchus near its origin. There are large vessels in the right hilum and superior mediastinum in this patient with extensive heart disease.

So, overall, a pretty good report.  Of course I'm aware that to some people, reading this about your child could be quite upsetting - but my perspective is SO out of whack.  In 2007, she had most of her right lung removed (it wasn't really lung, it was a mass of some kind).  So, it is wonderful to read that her chronic lung disease is markedly improved.  Of course the use of the words, may, possibly, and somewhat seem a bit non-committal in a medical report.  I don't know that it answers the question of why she needed oxygen so much in the past six months.  It would be nice if a summary of the report in layman's terms was provided.

Moving on...

My back really changed things the last few weeks.  Last week, I knew I had to be smart about making sure I did everything I could to help my back get better, faster.  Sitting unsupported (a seat with no back) was the worst.  I was better if I was moving or laying down.  So, I saw my chiropractor a few times.  And I laid down every chance I could get and iced my back as much as I could.  This made me very unproductive last week.  But, it paid off in the pain department.  I am MUCH better now!  This morning I took Rooney for a long walk and did some light running when Rooney would allow.  And I am so happy that I felt no pain!  I am going to play it very safe though, and take it slow in getting back to my old running/TRX routines.  But just knowing that things are better have already lifted my spirits.  Great timing, too!

I'll end this post with some recent pics...

Okay, maybe this one isn't so recent.  This one is from June 1.  It was Cooper's last soccer game.  I don't think I ever blogged about it.  Oh, maybe I did - he scored a goal in his last game.  Did I already talk about it?  Oh well, sorry if I did!

Rooney, helping me with the laundry.  He's such a good dog.

We met some friends at the pool for dinner.  Harlie's not the most affectionate kid, so this is a rare, wonderful moment.

I love our walks in the evenings with the dog and the kids riding their bikes (except for Harlie, of course).  I think it's safe to say that the kids like them, too.  Just look at how happy Harlie is...

Even some of the kids in the neighborhood like to go with us.

Philip, Cooper, Murphy and Cole

Did I mention that Cooper learned to ride a bike (without training wheels) recently?  Oh, I am such a bad mom sometimes!  Well, he did and he's doing great!  He's the most polite kid sometimes.  He can't quite get started by himself yet, he still needs a push.  And he is so quick to say, "Thanks, Mom!" every time.  And he's so genuine when he says it.  It's so cute.  And while riding it the other day he said, "Mom, I really love my new bike. Thanks for getting it for me!"  It's a hand-me-down, but he doesn't care!

Okay, that's it for now.

Thanks for reading!
~Christy

CT scan and a some other stuff

Yesterday (Wednesday) was Harlie's CT scan.  And she did great!  The night before (Tuesday) I pulled up some photos of a CT scan and showed them to her.  I asked if she remembered being in one.  Of course, she didn't reply.  I went on to tell her that you have to be very still and not move while in there.  She seemed completely uninterested.

But, I think she was taking it in.  Because when we went the next day, she was not at all bothered.  She didn't fight putting on the hospital bracelet (something she used to do because she thought that meant she wasn't going home).  And when we walked in the CT room, she was a champ.  She remained perfectly still.

After it was over (just a few quick minutes) they checked over the images to make sure they were good.  Then we headed on over to pick them up on disk so I could send them to Boston.  I feel so much better now.  I couldn't fall asleep the other night because I kept on thinking of all the things I have to do and take care of - this CT scan was at the top of the list.  I am happy to be able to check this one off for good.

If only the CT scan was scheduled for an hour earlier, I could have made it to Cooper's end of year program.  Darn it.  Luckily, Tom was able to go.  And this wasn't Cooper's preschool graduation.  While a lot of kids in his class are going to kindergarten this fall, he has one more year in preschool.  With a late September birthday, we are definitely holding him back a year.  So, I'll have another opportunity next year.

Today was Cooper's last day of school.  It was a really short day, then they had a family fun thing afterwards.  They had Jonathan Austin, bounce houses, face painting, a craft table and a petting zoo.  Just look at these adorable baby bunnies...

Sweetest things ever.

They also had hairless guinea pigs.  Eww.  Poor things can't help how scary they look.  And they had a few small pigs.  CUTE!  I could have taken that little guy home he was so adorable.  Instead, I took home a little tiger...

James and Cooper - Tigers!

On Tuesday (going backwards) Harlie had feeding therapy.  She did this while she was there...

I just love how she labeled her own picture.

And then at swim practice (swim team started for Murphy on Monday) she did this...

She's so silly.

I'll get caught up on this blog eventually.  I haven't been able to exercise in over a week - or blog - and now that's got me all grumpy.  Somehow I've got to get my life a little more organized so I can be more efficient.

Also, one more thing before I go... There are a few items that were left after the We Heart Harlie event on Saturday.  Does any of this belong to you?  Or someone you know?  I hate that a child lost their glasses!

Please pass on the word that we have these items.

Okay, that's it for tonight.  As always, thanks for reading!!

xo,
Christy

Surgery Update 1

They took her back at about 7:45 this morning. I just got the first update that the procedure started at 9:06. That's a long time to get her under and IVs and central lines started! Her access is getting so difficult.

Anyway, I heard the results from her CT scan. And its a good thing they did it. Her heart is right up against her sternum. So if they have to replace her leads they would have to put her on heart bypass before opening her chest. They would decompress her heart to pull it away from the sternum and then do the sternotomy. Crazy stuff. It would also be her 5th sternotomy in five years. I'm SO hoping that her leads work just fine.

My mom came up for the day. So we are just hanging out - waiting. I now have access to my blog - obviously - so will update you again when I know more.

Thank you all so much for thinking of us! Its so comforting to know you all care about us!

Much love,
~Christy

Another Change

So, Harlie seems to be feeling better.

On Wednesday right before 5pm she asked to go to bed.  Well, she signed "night-night".  So, I put her in bed and she slept until about 8pm.  Then she got up to for about an hour or so and then went back to bed.  She had a fever.  But she didn't seem too miserable, so I didn't give her anything for it.  I wanted the fever to do it's job and kill whatever was brewing.  I checked on her several times throughout the night to make sure she wasn't too hot.  And by morning, the fever was gone and she was way happier.

Even so, I took her to see her pediatrician.  He thought that she would most likely be fine by Tuesday.  It's probably just a cold.  But he put her on a 3-day course of antibiotics, just in case.

She seemed to be much better today.  She still has some thick secretions, but we suctioned way less today than yesterday, so that's good.  And no more runny nose, so that's good.  And tonight when I was putting her to bed I asked her how she felt (not expecting an answer) and she signed "happy."  So, I grabbed her communication device and asked her again.  And she said "I feel happy."  I told her that I was happy knowing that she was happy.  And I can't tell you how true that is!!!

That is the first time that I've ever asked her that question and got a very clear and purposeful answer.   So, so awesome!!!

I spoke to Katie again today about how Harlie was doing.  I told her about the fever the other night and gave her a full update.  She said as long as she continues to improve, we're good.  But if she gets another fever, I have to call her.  My fingers are crossed!

She also said that they are making another change in our itinerary.  Because she has to have a CT scan with contrast on Monday and might need anesthesia to do it, they need to do the CT scan when the cardiac anesthesia folks are available.  They are only available in the morning.  If we arrive at 8am, there just isn't enough time to get her admitted, get a bed, get to CT, get an IV (for contrast) and attempt to do the CT without anesthesia (because she can't move while images are taken and we don't know if she'll be able to do that for the length of time required).  By the time they do all that, and then decide she needs to be sedated, the cardiac anesthesia team will no longer be available.

So, we need to go up Sunday so she can get admitted, get a bed, and all that good stuff, ahead of time.  I told Katie she must really miss us or something.

A few weeks ago we had to sign up for booth sales with Harlie's Daisy troop.  You know, when you go to a store and you see the girls selling Girl Scout cookies?  Anyway, I signed Harlie and I up for one tomorrow.  But, of course, I did that way before I knew she would be having surgery this coming week. So, I've kept her out of school, she's on antibiotics and I am NOT exposing her to anyone sick.  It's going to be about 40 degrees, give or take from 9:30-11:30.  I'm thinking I don't want her out there.

And this would be why I try not to commit to anything.  I'm not reliable.  Period.  So, I'm just going to go and not take her.  It kinda sucks.  No, wait.  Not kinda.  It does suck.  But, it's just the way it has to be.

Then, to prove that I'm completely insane, we're going to look at a some Pug puppies!  I'm not as excited as I was yesterday because two of the three puppies are now sold.  Well, they are four weeks old and not ready to come home yet, but someone's already claimed them.  And we can't get there until 4pm Saturday, so that last one could be gone before then.  So, I'm trying not to get my hopes up.  We'll just learn from this and use it for the next opportunity.  I say that so calmly, when really I'm crying on the inside!  I don't know why I want this puppy so bad.  But I do.  I just think this house could use a little more joy.  We've been down in the dumps lately.  Too much stress.  And studies have shown that having a dog can greatly reduce stress.

How can you be sad while playing with this little guy?

Well, it is very late and I need to get to bed.  As tired as I feel, sleep isn't coming so easily.  The second I lay down, I think of 10 things I need to do that I'm afraid I'm going to forget if I don't write them down.  Then last night, after I finally fell asleep, Cooper woke me up with, "Mommy, I need to go potty."  WOW!  Well, okay!  So, it looks like we're making some good progress there!

Speaking of Cooper, he is so freaking polite it kills me!  The other day his teacher told me that every time they have Creative Movement class (which is once a week, I think) when they are leaving the class he turns around, waves to the teacher and says, "Thank you, Ms. Julie!"  And then Ms. Julie told me that sometimes he's more specific about what he's thanking her for and says, "Thank you for the hoops (or whatever), Ms. Julie!"  They said he is the only kid that does that and they love it!

Then yesterday, my Mom came over and brought small gifts for the kids.  After a while, she said to me, "Well, I have to go home now."  And then Cooper came running through the room (not stopping) and said, "Thank you for my present, Nana!" and kept on running into the other room.

So, he overheard her telling me she had to go and - completely on his own - came to tell her thank you.  That's just crazy.  And completely adorable!

If I tell him, "good job, Cooper!" he says, "thank you, Mommy."  And if he asks me to fix something and I do, he says, "Oh!  Good job, Mommy!"  And he always says "bless you" if you sneeze and if you say it to him after he sneezes, he says, "Oh, thank you, Mommy!"

The best part is the way he says, "Oh" like he's both surprised and impressed.  He's turning out to be a very funny kid.

I should really go now.  Thanks!
~Christy

CT Scan and a Video

Today's CT scan went beautifully!  And for the first time, she was able to do it with NO anesthesia!!!  How exciting!

When I took the exit off the interstate and she saw the parking deck to the right, she started to cry/whimper.  I told her that it wouldn't hurt if she could stay still.  That's all we said to her, over and over again.  It's hard to tell if she understands something like that.

The anesthesia folks came to talk to me when we got there and I told them I wanted to try it without anesthesia first.  So, a nurse came to get us and told us that they were going to take us to the fastest machine they have.  She only had to stay still for about 15 seconds, I'm thinking.  And she seems to understand that for x-rays, so I thought maybe she could do it.

Before I put her on the table I kneeled down and told her that if she could stay still when I told her to, that it wouldn't hurt.  She didn't cry at all.  In fact, she didn't even seem scared!  That amazes me.  After all she's been through!!!  If anyone has the right to be freakishly scared at a hospital - it's her.  She's so darn brave it kills me!

So, we put her on the table and the nurse wrapped her like a burrito - and Harlie didn't protest one little bit!!!  Look at my big brave girl...

They put a lead apron on me and I stood right next to her.  When the nurse told me they were about to start imaging, I signed (I had to take Harlie's hearing aid out for the scan) for her to hold still and not to move.  And Voila!  She did it on the first try!!!  She had to lay there for a few minutes more to make sure that the images were good and that there was no motion in them.  I will go back in a few days to pick up the discs with the images and radiologist's report.  Then, we'll start to work on getting some surgical opinions.

Our appointment was scheduled for 12:30pm and we got there at 12:00pm.  It took a while to take us, but I'm thinking it was close to 12:30.  I was back in my car and exiting the parking at 12:47pm!!!!

What a great experience!  And every time we have a great medical/hospital experience, we are making big strides in Harlie's fear, comfort and trust.   I am hoping that she will start to trust me that when I say it won't hurt - that it won't hurt.  And when the time comes, and I have to tell her that it will hurt, but it will be quick if she cooperates, maybe, just maybe she will understand.

I can already tell a big difference in just a few months (before spinal fusion).  She used to refuse to let the admitting person put a hospital bracelet on her.  I would have to hold her down so they could get it on.  To her, that meant that she was staying and she wanted nothing to do with that.  Well, today, I asked her to stand up and let her put the bracelet on.  And she stood right up and held out her arm - no problemo!  Oh, it really is the little things in life!!!

Later on in the evening, Cooper got a bloody nose (accidental friend's head to Cooper's face).  He also must have gotten something in his eye while playing outside, because his right eye was starting to swell before the incident.  And that head butt didn't help matters.  So, we'll see what he looks like in the morning.

Then, after that, Harlie was watching one of her current favorite you tube videos.  Seriously - kids and electronics are totally out of control.  I don't know how she found this guy, but she did.

And this was her tonight...

I totally love it.  More than words can say.

Thanks!
~Christy

CT Scan

So, Harlie has a CT scan tomorrow of her head and neck.  I never got a chance to blog about an appointment we had with a craniofacial plastic surgeon here in Richmond back in June.

After a lot of consideration, I've decided to get this CT scan here in town in preparation of her next jaw reconstruction.  I have no idea when or where that will be.  But at this point, I feel that I owe it to Harlie to do some more looking around to make sure that we are making the best decision possible when we go into surgery again.  After two reconstructions with the same surgeon, and being no closer to decannulation (getting the trach out) I need to look.  We might end up sticking with her surgeon - but - I need to feel really good about this decision.  I don't know how many more I can put her through.

I've gotten some names from her ENT in DC.  They are docs that do the rarest of the rare cases.  They are in California and Florida.  However, when looking around - I also have to consider her cardiac status - and the surgeon's hospital's ability to care for complex congenital heart defects.  Not an easy task, trust me.

So, we'll see what happens.  She hasn't had a CT scan of her head and neck since 2008 - before her two jaw reconstructions.  I'm sure her jaw is a mangled mess, full of screws and pieces of bone.  Ugh.

Anyway, that's tomorrow.  I have so much more to write, but no time now.  I'll fill you in after the CT scan.

Thanks!
Christy

CT Scans

So, Friday was a long day. Just as I expected.

Plans were changed at the last minute, so we didn't have to leave until 7am (vs. 4am). At first I was glad. But, then I thought about it a little more, and realized I preferred the earlier time. The sooner we get there, the sooner we get to leave was my thinking. And we were in DC on a Friday. Not that any day is a good day to be in DC traffic, but Fridays seem particularly awful.

At first we went to CT Scan check-in, but were told we needed to go to Surgery (since she was getting general anesthesia). When we got to Surgery, they told us to go to CT Scan. Heh.

Then I told her about the anesthesia and she said she didn't have any paperwork on her so it would take a little while. Hmmmm. It took over an hour till we were finally called back to register! I will admit that I was a little mad. Okay, a lot mad. After as many conversations as I had with various nurses in the days prior to the big day, I didn't understand why the paperwork wasn't ready.

Until a nurse came in to do Harlie's history and physical.

She told me that earlier that morning she was going through her patient files and saw that Harlie was there for a CT scan (not realizing that she was going to get general anesthesia). She said that she thought that was a mistake since they don't do CT scans. She took a quick look at her file and said "thank goodness I don't have to do the paperwork on this one" and went on about her day. HAH! It was actually pretty funny. I can imagine that from a paperwork perspective, Harlie's a bit of a workload. Well, I don't really have to imagine. I have many 3-ring binders to prove it!

Anyway, here's Harlie and Brandy while we were just hanging out waiting.



Harlie was fine and playful until we got in the exam room and the nurse brought in the hospital gowns. Harlie took one look at the gown and started crying. But, it was a very brave cry. Just a tear or two with absolutely no sound. It broke my heart. For all she knows she's checking in for a week or two. She has no idea. What a way to live! But, as you can see, she seemed to get over it pretty quickly.







I love this one. She looks so curious about what the nurse was doing. I have a feeling she's going to be dangerous with all her knowledge when she gets older...



I'm hoping a few of these quick hospital visits and procedures will make her feel less scared when she sees her next gown. Which, with any luck, will be very soon (for a new ear tube).

Her ENT was able to look in her ear while she was out. He said that her tube has come out of her ear drum. So, another will need to be placed. He said that since this will be her third, he's going to put in a different kind of tube that's designed to stay in longer. He said there was no granuloma or blockage in her ear canal. Bummer. But he said that a lot of kids with craniofacial issues can't pop their ears. And since her tube has come out of her ear drum, maybe that could be contributing to her hearing problems.

The plan now is to schedule an OR time for an ear tube placement, and then immediately after, do an ABR test. At that point, we'll know exactly what we're dealing with as far as her hearing goes.

Oh, she had a lumbar puncture so they could inject dye for some contrast scans. Since she can't have an MRI, they did some other scans to hopefully give them as much information as possible. They told us to run and get lunch quick, because it would only take about 15 minutes till she would be done. So much work for 15 minutes of scans!!! Anyway, we hurried back and waited. And waited. Then the doc came out to tell me that it took longer than normal to get the dye in her spine "due to her anatomy." I'm sure.

Then at 4pm they let us take her home. Ahhh, 4pm traffic on Friday in DC. The best. We finally got home after 7:30pm. A long day. But now we can proceed with lots of things. And that's good.

She will see her plastic surgeon in Norfolk on Tuesday. She will see her orthopedic surgeon on November 3rd. And hopefully soon, she'll see her ENT for her new ear tube. And, with any luck, after each appointment I'll have an idea of when her surgeries will be. Which, I like, since not knowing kind of stinks.

More later!
Christy