Thursday, December 19, 2013

We are fine.

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

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

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

Me, Michelle, Carol and Amy

Tom and me

Thanks Bert and Amy for having us!

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

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

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

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

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

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

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

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

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

There are a few small miracles there:

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

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

WHAT?!

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

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

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

Seriously cute stuff.

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

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

We are fine.  Really.

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

Much love,
Christy xo

Friday, December 13, 2013

Heart cath results

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

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

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

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

What does this mean?

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

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

Here are more questions/issues:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Much love,

Christy xo

 

Wednesday, December 11, 2013

Pre-op appointment and random pics

Tuesday, December 10

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

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

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

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

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

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

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

Wednesday, December 11

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

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

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

During speech therapy.  She loves it.

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

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


Helping around the house.

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

I think he was looking for his buddy, Otto.

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

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

Much love,
Christy

Thursday, December 5, 2013

Long Update. No school. Quick ER stint.

I started this post on November 25th...

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

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

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

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

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


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

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

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

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


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

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

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

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

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

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

November 29

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

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

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

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

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

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




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

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

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

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

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

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

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

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

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

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

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

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



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

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


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

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

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

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

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

Much love,
Christy xo