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

Back in the hospital

Whew!  I can't seem to keep this blog updated.  Harlie is a moving target lately.

Monday was Labor Day.  Tom and I took the boys to the pool.  Harlie can't go because of the PICC line (which can't get wet) and of course, the insane amount of oxygen she's on.

Cooper, Philip (our neighbor) and Murphy

Tom throwing Cooper.

Murphy, Philip, Kaden and Cooper.

I took the last photo and posted it on Facebook.  After seeing so many happy pictures and status updates about how great summer was and how sad most people were that it was over, it made me think about how I felt about this summer.  My caption - Good effin' riddance Summer 2013!  I wish I could have hash tagged it (which I never do) as "worst summer ever" but - sigh - it's just too close to call a clear winner.  There was that one summer that I feared her death the whole season... so that sucked, too.

Anyway, I'm not sure where our current situation falls.  The end of summer or the beginning of fall?  Because if it's the beginning of fall, that's not a good sign.

Tuesday, September 3

The first day of school!  Murphy rushed out the house to go get Philip, so I missed our photo of him under our tree.  Darn it.  So, Philip's mom and I followed them there.  I carried Murphy's school supplies (since I forgot them the other night) and took photos.

Philip and Murphy

Philip and Murphy.  I don't know why Murphy
has such a hard time with photos... grrrr.

Crazy.  

Murphy unpacking.  

Murphy ignoring my request for a smile.
Looks like he wanted to get serious about school.

Of course the bus came to the house for Harlie.  When they tried to reach me last week, I was in the hospital, so we never spoke.  The bus came and Tom had to go out there to tell the driver she would not be taking the bus for a while.  It made us both very sad.  To be surrounded by healthy children and know that one of yours isn't, is hard.  Living with grief every day....  And I've been feeling a lot more anger than usual in the past eight months.  I just feel like I'm running low on grace.  We have such an extreme situation in so many ways.  She's not textbook anything.  One problem complicates another problem's solution, etc.  And when things are bad for a while, I always start to wonder, is this the beginning of the end?  Is this going to be our new normal?  I hope not.

I spent the morning making a bunch of phone calls and sending emails.  And I scheduled an appointment with Harlie's pediatrician for 1pm.   I sent Cooper to Bethany's house, and Terri and I took Harlie.  As we were walking out the door, she realized where we were going, and started to cry.  She really has so little energy and had no interest in getting off the couch.  Then she signed "potty."  Never fails.  She cried and sat on the potty for a little while.  It occurred to me that she could have been stalling.  So, I told her that Dr. Derco was not going to hurt her.  And she got off the potty and went into the car.

Her doctor said that she had pitting edema, which basically means that fluid was accumulating in her soft tissues.  I guess her lungs were running out of room.  She's also up four pounds from just three weeks ago.  Anyway, he said she needed more Lasix (a diuretic to help her body move the fluid into her kidneys so she could pee it out).  Unfortunately, her one daily dose was scheduled for 2:30, so it was going to be a while before we would be able to see a difference from adding a dose.  He called her cardiologist and then her cardiologist called me a little while later.  After her doc was done with his exam, I said, "See?  No hurt.  Remember when I told you that it wouldn't hurt?"  I really want to get her to the place where she trusts what we say.  What a difference that would make with her fears (and subsequent behaviors)!

We rushed home after the appointment because I really wanted to walk with Murphy home so he could tell me about his day.  At about the time I was leaving to get him, Harlie's Medicaid case worker got to my house.  She did an overall assessment of our situation and upped our nursing hours from 10 a day, to 16 a day.  So, that's good.  Luckily, the school was running late (first day and all) so I made it in time to chat with a few parents and then walk home with Murphy.

Classmates after school.

He had a great day and likes his teacher, so that's awesome.

Then we went home and I spoke to Harlie's cardiologist.  He wanted her to have IV Lasix instead of oral Lasix.  So, I called the infusion company to see if they could provide the IV Lasix.  The manager that I spoke with said it wouldn't be until Thursday till he could get it.  And if she needs it, she can't wait that long.  He also said that he wouldn't even be comfortable with us giving it to her at home.  It lowers blood pressure, so he would rather her be monitored.  I think the general thought was that if she needed it, she needed to be in the hospital.  But, we are not the norm, and I have IV access (clearly not the norm) and I have a mini-ICU at my house.  Maybe that makes me feel like I'm more capable than I really am to keep her home and nurse her through this.  I don't know.

Yet I still made her come with us on a walk in the evening with the dog.  She didn't want to go, but we put her in the jogging stroller with an oxygen tank and I think she enjoyed the fresh air.  It's always so fun to see Rooney run his heart out!

Anyway, come bedtime I gave her a second dose of Lasix.  After that she only peed once.  Whereas the last time I gave her a second dose at bedtime (Saturday night) she peed twice.  The night was rough and I had to get up several times to see why she was alarming.  Now that she's on so much oxygen, if she alarms, I have to go in immediately to see why.  Her tubing could be disconnected or something and without the oxygen, her sats sink in to the 60s in a matter of seconds.  No exaggeration.  Anyway, I was tired this morning for sure!

Wednesday, September 4

Once I was up and Murphy left for school, I emailed her cardiologist and pulmonologist to give them an update (and to tell her cardiologist that we couldn't get the IV Lasix).  Dr. G. (cardiologist) emailed right back and after going back and forth a few times with more details, he said it would be best if I just brought her into the ER now.  Her belly is distended and that might mean that oral Lasix wouldn't work as well, so she needs IV Lasix.

I was walking the dog with Cooper when I got that last email and was kinda far from the house.  So, it took me a while to get back.  But, that gave me some time to get Cooper squared away.  My friend Michelle had just sent me a text telling me she was available, so I called her.  Her and Sally came right over.  They took Cooper to the park.

Then Cooper and Rooney went to Bethany's house for the rest of the day.  And Murphy went there after school.  Then the boys went across the street to Philip's house for dinner.  His mom is making dinner for them tonight and tomorrow night.  Oh, what would I do without my neighborhood???  Even though our life is kinda crazy, they are entertained, loved and well taken care of.  So, thankful!!!

As we pulled into the parking lot of the hospital, Harlie saw where we were and yelled, "No!" from the backseat.  Ugh.

So, we got to the ER and saw some old friends.  A nurse that we had years ago was back!  It was so good to see her!  She went to a different department for four years and today was her second day back in the pediatric ER.

Then Dr. G. (her cardiologist) came by to see us.  And they did an echo (ultrasound of her heart) just to make sure all the extra fluid wasn't negatively affecting her heart.  Then they got a chest x-ray and an abdomen x-ray.  Her chest x-ray definitely shows a lot of fluid - on her right side especially.  And it's now in the chest cavity instead of just being in her lung tissue.

She's now been admitted into the PICU (last time we were in the progressive care unit, which is a step down from the ICU).  Funny how you get comfortable somewhere.  At first I hated the PPCU, but being in that room made it so much better.  And I got to know the nurses and team.  In the PICU, it's a whole different team.  Of course, I'll get used to it here, too.

She's also doing a lot better than when we got here.  And she immediately asked to sit in the chair, with the table and the computer.  Of course, she's not been fed or had any water flushes since 10am.  And apparently, you can be dry in some ways and fluid over-loaded at the same time.  So, that makes getting her balanced easy.  Not.

They have now started her on an IV Lasix drip.  Her blood pressures have been low today, so they had to get some meds to have on hand just in case they need to give her something quickly to raise them.

We already had some visitors - Niki and Katherine - some of my running friends.  I forgot to get a picture.  Darn it.

It is now after 9pm.  And I am pooped.  We are about to give Harlie a bath, and put her to bed.  Then I think I'll go home for the night and return early tomorrow.

Oh, one other thing... today at Harlie's school, a lot of the moms organized all the kids who had We heart Harlie t-shirts to wear them today to school.  So sweet!

This morning.

Thank you for all the wonderful support and love!!

Much love,
Christy xo

Quick Update

On Monday, Terri came in and I was still in bed.  She started her assessment of Harlie (who was also still in bed) and then she poked her head in my door.  She said, "Harlie is on four liters of oxygen - and she's only at 85%?"  I said, "Yes."  Four liters of oxygen is a lot.  She looked concerned.  And then she left.  A few minutes later she came back and said that her trach had some bloody secretions.  And that she thought maybe she should go to the doctor.

But, I was in no condition to take her to the doctor.  Or the ER, which is where I knew she'd end up.  Well, right at that time my friend Jennifer called.  And I told her what was going on.  And wouldn't you know that she offered to come over here and drive Terri and Harlie to the doc and ER for me, so I could stay here and rest?  Wow!  So, my Mom came over to hang out with Cooper downstairs.  And Jennifer and Terri took Harlie and I stayed upstairs and slept.  Crazy, huh?  And I crossed my fingers that there would be no reason to admit Harlie to the hospital.

They got back later on that afternoon, with Harlie, luckily.  Terri said that Harlie was a mess until they got to the ER.  She said that once they were there Harlie got herself together and smiled at everyone while playing on the iPad, looking all innocent like nothing was wrong.  I guess she realized where she was going to stay if she wasn't on her best behavior.  She didn't cough up any blood or anything.  She said the doctors were like, "So, what brings you here today?"  I had to laugh.  She has totally done that to me before.

Her x-rays were good (which is so bizarre considering her sats are so low!).  And they tested her for the flu and her test came back positive for Influenza B.  No surprise there.  See? I told you we all had the flu.  But, she's been on Tamiflu since Friday.  So, at this point, there's nothing we can do but treat her symptoms.

Today is Friday and I am definitely feeling better.  And I can't tell you how good it feels to be back in the land of the living again!  I might even try to run a little this weekend. I'm not back to 100%, but I'm getting there!

Harlie is still on four liters of oxygen.  And her sats still go to the mid 70s when she's off the oxygen.  But, she seems happy.  Of course she's pretty much confined to the couch since we've been leaving her on trach collar (humdified air with oxygen) to help keep the oxygen from causing more mucus plugging.

I have to tell you that I am really over her not being well.  She has been sick all but three weeks since Christmas.  And I miss a healthy Harlie.  It's been so long since she's been energetic and playful.  And I'm sure she misses being healthy, too.  With any luck, she will recover from this flu and this will be IT.  I just had to reschedule that darn sleep study.  Again.

On a good note, she is doing great with her BAHA.  I'll have to take a picture for you so you can see it.  But, now the processor just clicks right on her head.  It's so cool.  She's still sensitive and fights putting it on for a while.  I usually have to withhold something she wants (like the TV or iPad) until she lets me put it on.  It only takes a second, but you do have to press a little hard, so maybe it still hurts a little.

Anyway, while wearing it, for the first time EVER she actually asked me to turn the volume down on the TV!  Can you believe that?  And then while using her communication device, she turned the speaker volume down.  I'd say that's a pretty good sign that she's hearing better with it actually being bone anchored now.  Woohoo!  Now if only we could get her back to school so we could see it in action.

On Thursday night, Paige (Paige Stevens Photography) came over and did a quick little photo shoot with Harlie.  This was our third appointment - every other time Harlie was too sick.  We took Harlie off the oxygen for the photos - and just let her hang out in the 70s.  You wouldn't even know it, either.

Harlie was so good!  She was completely cooperative in every way!  I just couldn't believe it.  She is really growing up.  She no longer squnches her face all up when she smiles.  Wow.  What a difference that makes!

Paige is so good, too.  I really can't wait to see these photos.  We did it to get a photo of Harlie for the new flyer for the 2nd Annual We Heart Harlie fundraiser.  Lynda is already busy making big plans.  So, save the date!

We Heart Harlie

May 18th, 8am to 11am

at Glen Allen Elementary School

And this year there will be a 5k, too!  

There will be the raffle like last year.  So, if you have a service or product you would like to donate, just let me know!  We are working on getting some cool printed t-shirts, too.  I know a lot of people wanted to order shirts, but we just couldn't keep up with the demand.  So, this time, we'll have them on hand.  More on all that as things develop...

Tomorrow (Saturday) is Cooper's first soccer game.  I have to admit that I'm a little worried.  The other day Cooper and Murphy were kicking the soccer ball in the backyard and when Murphy kicked the ball, Cooper started crying.  Oh boy.  Does that mean he's going to spend the whole game crying?  Guess I should prepare myself to be pretty embarrassed.

That's it for now.  More later!

Much love,
Christy xo

Hospital Recap

First, we are home and all is well so far.  This last hospital stay was not a good experience.  Not that any of them are, really.  But most of the time, even though the time is rough for her, it's balanced by good care, good nurses, and an overall feeling of knowing I have a bunch of good people on my side all helping me to make good decisions for Harlie.

But, this one was bad all-around.  In every way.

Let me see if I can summarize it without using a gazillion words.

The time in the ER was fine.  I showed them the photos that Terri took and sent to me via text.  They definitely perked up and took things more seriously.  They did an exam, and found nothing to note (meaning no visual source for the blood, nor any hard stool inside that could be causing a problem, either).

They took some x-rays and wanted to do that test for the intussusception.  For that, they had to take her to radiology and put a tube in her butt and pump air in her intestines.  No intussusception.

Then they asked when she last ate, because they were going to admit her and try to do a scope in the morning.

The whole time we were in the ER (6 or 7 hours I'm guessing) a bunch of different people came in and asked me the same questions over and over again.  Which meant I had to tell the story over and over again.  Next time, I'm going to count the people so I can show you how exhausting it is.  Especially when she has such a complicated history.  I know the med students need to learn and the residents are doing whatever it is that they are supposed to be doing - but it gets old.  Fast.  Especially when you take in consideration how many times I've experienced this whole scenario in the last six years.

I really am the most patient person I know.

So, by the time we get to her bed (more on that in a minute), I have in my mind that they are going to scope her in the morning.  They have already started the bowel prep to clean her out.  To scope her - not to relieve any constipation due to anything they saw on the x-rays.  Also, I never actually spoke to her GI doc (who just happened to be the attending GI doc at the time and was also IN the hospital at the time).  All information was being relayed to him and back to me by middlemen - the docs in the ER.  I found this to be slightly annoying, but they told me a plan, so I was okay with it.

Back to the bed for a sec, they put her in the PPCU (pediatric progressive care unit) which is a big room with beds separated by curtains.  I remember when Harlie was six months old after we spent eight weeks in the PICU (pediatric intensive care unit - which was a private room with a private bathroom) and she was well enough to leave the PICU.  My brother, Bruce, had visited when we were in the PICU.  And then he came to visit when we were in the PPCU.  He said that going from the PICU to the PPCU was like moving from a nice hotel to the bus station.  I can still remember the look on his face when he walked in the room.  I laugh every time I think about that.

Anyway, the night sucked, as most nights do when you're in the hospital.  My sleeping space was terribly uncomfortable.  But what do you expect from a bus station?  When you can hear everyone cough, talk, their TV on some trash (that's not kid-friendly) and the lights are on for the nurses station, it makes for a yucky night.  I think they were finally done messing with her by midnight.  So, she finally fell asleep after that.

You can see that she's hiding her right arm under the covers.  It's the one with the IV in it, so she hides it thinking people won't mess with it.

I woke up several times throughout the night, which is typical.  There are a lot of noises and Harlie spent some time coughing.  Luckily, we had a good nurse who was always quick to suction, so I didn't have to get up.  That's the benefit of being in the PPCU vs. being in a private room on the floor (if you are trached, of course).  Being on the floor, you have the highest patient to nurse ratio - so you get way less help from a nurse.  And the nurse can't hear when she needs to be suctioned.  So, from my perspective, being in the PPCU does have it's benefits.

Anyway, right before we went to bed, I spoke to a doctor who told me that the GI doc had a case early in the am, then had clinic at a different location.  So, he may or may not be able to scope her in the am.  Okay.  Not sure what it means if he can't do it.  But, I wasn't going to worry about it until it happened.  So, whatever.

The GI doc came to see us around 7am I think.  He came in and poked Harlie's belly and then I showed him the pictures I had.  He raised his eyebrows and said, "Well that is active bleeding no doubt."  Then he told me that "something could have popped" like a cyst or polyp.  Or there could have been a tear in her colon.  He asked the nurse how her bowel prep was going, and apparently she wasn't cleaned out enough.  So, he left and told me nothing, really.  All total, he was with us for two to three minutes, tops.    I could tell he was in a rush, and I get it.  But it's still hard when you want more information and you can tell their mind is elsewhere.

They upped her clean out stuff to be more aggressive.  And we waited.  I can't remember exactly when I was told that he would not be doing a scope.  But, I expressed my reasons for wanting him to do it anyway.  Again, we had to go through other doctors to communicate with the GI doc.  So, this "conversation" took hours and hours.  So, I would ask a question, and it would be an hour before I got an answer.  I asked what his reason for not doing it was.  And was told that based on the x-ray, it was most likely a tear.

Sorry, but this is going to get kind of gross - but there's no way to tell you without it.  So, I said, what?  If he is basing this on the x-ray, why'd you do the study for the intussusception?  And what about "something popping, like a cyst or polyp?"  Had he seen the x-rays before coming to see us?  

At some point in the going back and forth, the doc doing the messaging changed.  Ugh.  Then I was told that there was hard stool when they did the exam in the ER.  Um, NOT true.  Not true at all!  And if her colon was so full of stool that it tore (keep in mind that she displayed NO signs of being constipated, which I know her signs of very well) how'd you get air in her intestines?  And I was there when they inserted and removed the tube.  There was nothing in it's way.  And definitely no hard stool.

So, I tell her that is not accurate information.  Is this what he's basing his diagnosis on?  Because if so, he needs to know it's not accurate!  I need to know that he knows that she was displaying NO signs of constipation.  I need to know what he knows so that I'm comfortable with what he's telling me.

At some point she returns and said that he said that he could fit Harlie in on Monday to do a scope.  It's now Thursday late afternoon.  And she's already been completely cleaned out.  They told me earlier that he ordered repeat x-rays for 6AM (the NEXT morning), which meant she could not eat until after that.  By 6am, it would have been 42 hours since she had any food.

So, he thought it was reasonable to ask Harlie to go 42 hours without eating (and that's if they did the x-rays when they are scheduled - and if you know hospital time - then you know you can't count on that), eat on Friday and Saturday, and then do another bowel prep for Monday.  With another IV.  And another bad experience at a hospital.  All within four days' time.

And, if you want to think about it from her perspective a little more - she also just had outpatient surgery on Feb. 12, with an IV, and then had an ER trip in January, also with an IV.  That's a lot of crap in a small amount of time.  Especially for a girl who has been through so much.

All I'm doing is trying to lessen the negative experiences a little.  I always try to combine procedures if I can.  And that's really all I was doing.  She was ready to be scoped.  I saw no reason to make her go through all of it again in just a few days.  At some point I said that we have enough unknowns to deal with - could they please just take this off my shoulders?  And does the GI doc know that he's dealing with an A-typical patient?  She rarely does what's expected.

So, I said all that (and more) to the doc.  I told her this was not patient centered care - because they were not thinking of Harlie and her overall well-being.  And I also said I didn't think he was being a thorough physician.

The problem with this whole situation is that the communication between patient (via me) and doctor was awful.  Dealing with a middle man all the time leads to way more room for error.  And I cannot possibly have any confidence in what's being said to me when I don't know what's been said to him.

For example, the next time I saw the resident, I asked her if she told him that I said I didn't think he was being a thorough physician.  She said she did not.  So what else did she not tell him?  Did she tell him that the info about the rectal exam wasn't accurate?

Ugh.

So, the bottom line is that I could not possibly have any confidence in anything that was said when it was said back and forth.

And the only option I was given was to bring her back on Monday.  Which, I don't even consider an option, really, because I just don't think that's right to do to her.  So, knowing that, why didn't he offer a regular appointment, so he could answer all of my questions?

Was he making the decision about the scope based on Harlie (and the inaccurate info) or based on his availability to do it?  At some point I was told that anesthesia wouldn't do it unless it was an emergency.  But shouldn't her doctor advocate for her that it was in her best interest to do it then?

And why the hell couldn't he just call me himself?  FIVE minutes is all I would have needed with him to leave that hospital in a completely different mindset.

We just didn't matter enough.  And with a girl like Harlie and her complexities - that's a VERY scary feeling.  I instantly felt very alone in her care and without any good direction as to what to do next.  So much for having a good team on my side to help me make good decisions for her.  So, if it happens again, what do I do?  Where do I take her?  Back there?  What if he's busy and doesn't have time to come see her and talk to me again?  I just don't think I could take that chance.  So, I guess I would have to put her in the car and drive to DC.

Isn't that just awful?  And here, locally, they are calling the pediatric division of MCV, Children's Hospital of Richmond.  Crap.  How can you call yourself a children's hospital when a parent can't even talk to the doctor?

And I love MCV.  It is, by far, the best care for our children in our area.  Well, that's my opinion anyway.  I've really liked all her docs so far.  But, clearly, there's a shortage in the GI area.

So, after I had reached my breaking point, I told the resident that either they were going to scope her during this stay (not picky on when, even) or they were going to do the repeat x-rays tonight (she was completely clean by this point) and discharge us.

So, they did the x-rays (all good, I was told) and we left.  The doc that was in charge of the PPCU came to talk to me.  I guess he heard that I was upset.  I wasn't yelling or anything.  So, I told him some of the basics (by now I was so over all of this).  I got my phone, pulled up the photo of the blood clots and showed it to him and said, "If you had this come out of your butt wouldn't you want a colonoscopy?"  He had to laugh a little and he said, yes.

I will say that he was the only one that really seemed to care.  After we left, he called me on my cell and told me that he called the GI doc himself to see if he could get more info.  It doesn't really matter what he thinks though, because I don't know if he knows everything.

The bottom line is that what he thinks happened (tear in her bowel) makes NO sense to me.  That doesn't mean I think he's wrong - I just don't understand it.  And usually, if I don't understand it, something's not right.  And I still have questions.  Oh, and to make things worse, the GI doc didn't tell me when to restart her aspirin.  Again, not very thorough if you ask me.  I guess I'll have to restart it based on my medical school knowledge.  Oh, yea, I didn't go to med school.  Grrrr!

So, after having calmed down a bit (although I still think I'm right that he should have cared enough to call me at least) now I have to come up with a plan.  If he is right and that is what happened, then I have to know how to prevent it - especially when I thought we were doing everything right.  So, something's going to have to change.  But what?  I still need guidance.  I can't do this alone.

If he's wrong, then I have to know what to look for and I have to know what I'll do.  Either way, I need some time in front of a GI doc.  I think if nothing else, I have to have my questions answered.

As I said earlier, a follow-up appointment wasn't offered.  And I couldn't see him anyway.  I already think he doesn't care that much about his patients.  Don't think I could get that out of my mind.

So, I have to find another GI doc at MCV or I have to go see one in DC.  I haven't yet made up my mind.  Even seeing another doc at MCV doesn't guarantee I won't be in the same situation again (if it happens again, he could still be the one "in-charge" when I brought her in).  I have to assume that if it happened again, they would look further than the first time.  But, you know what they say about assuming....

I told the last doc (the one that seemed to care) that I'm not ever like this.  I have never left a hospital this upset and disappointed before.  And I've left a hospital hundreds of times in the last six years.  He doesn't know me at all - and to him I could have been some crazy mom that is never happy.  But, that is so not the case!  I really don't think actually speaking to the GI doc in person was too much to ask.  And if it is, then something has to change if you want to be a successful children's hospital.

Oh, and another thing, when I was talking to that doc that seemed to care, the nurse and Tom were with Harlie, removing her IV.  Harlie was crying and thrashing and fighting.  I pointed to her and said, "He wants me to do this to her again?  Look at her?  Do you think that's patient centered care?"

Ugh.  I really am exhausted.  Fighting for her like I did was the hardest I have ever had to fight for her. Ridiculous.

I couldn't get her in the car fast enough.  We got home, I gave her a bath and put her to bed.  By this point, it was around 10pm or so.  I haven't been able to tell you about the headboard Tom and my niece made for Harlie.  Tom made it and then Maggie painted it.... what do you think?

My exhausted little love.

It felt so good to be able to tuck her in her bed.  She knows she's loved.  I just hope she's loved enough to make up for all the crap she has to deal with.

I know I did my best for her.  Even though I didn't get what I wanted.  I tried.  Now I have to re-group and get her a doc I trust.  I am so thankful for the docs that take their time with me.  I hope they know how important trust is and how comforting it is to know I feel it with them.

Okay, well this turned out to be longer than I wanted it to be.  But so was the hospitalization.  For the record - had he thought that about her x-rays to begin with, I could have done a clean out at home, and saved a bunch of time, money and aggravation on all our parts.

But what do I know?

Thank you so much for all your support and offers to help us in any way you could.  Seriously, I would not be as mentally stable as I am without your support!  ;-)  We are so lucky to have such wonderful people in our lives!

Much love,
Christy xo

ER visit

Thursday

Harlie seemed totally fine (well, except for that little pesky O2 requirement), so off to school she went.  Seriously, I was thinking any minute now, she's not going to need it.  

After everyone was where they were supposed to be, I went to my Adrenaline class.  It was great.  Then I came home and sent some e-mails.  I e-mailed Harlie's pulmonologist.  I just wanted to let him know what was going on and get his opinion.  I really couldn't quite understand his response, to be honest.  I really like her pulm, he's great and very personable.  And when we see him in the clinic, he always explains things in a way that I can understand.  However, this is just one sentence from his response...

There could also be more shunting going on with blood bypassing the lung across her cardiac defect from more resistance to blood flow through the lungs by the edema.  

Got it?  

However, this I understood easily...

Lastly, she has almost half the lung reserve that she needs and the illness (and healing) will create more oxygen demand particularly with any exercise.

Because he mentioned "shunting" and "heart defect", I went on ahead and sent an e-mail to her local cardiologist (just to be on the safe side).  He mentioned pleural effusions asked if she's had a chest x-ray.  Um, no.  We were really trying to avoid that.  But, maybe we should consider that.  Tomorrow, of course.  

At some point during the day Terri sent me a text to tell me that she was up to two liters on her tank, to keep her sats in the 80s.  That's kinda high.  For Harlie, at least.  Especially on day three of ABs (antibiotics).  Hmmm...

When they got home from school Terri told me that the tank at school was pretty much empty.  

It was after 2pm now.  Considering she will most likely need more tanks for school on Friday, I needed to get on that and fast.  So, I immediately called our supply company and asked about getting more tanks.  This was a nightmare, but let me try to make it more simple for you...

We had one "E" tank - which is a larger tank that goes in a rolling cart (which was empty and still at school).  

We also had two "D" tanks - which are smaller tanks that go in a shoulder strap bag thing (one was almost empty and one was full).  

The E tank was staying at school and Terri was using the D tank to get her to and from school.  That way she didn't have to carry the bigger tank on the bus.  

Apparently, on two liters of O2, the E tank will last four hours, and the D tank will last two hours.  

So, we didn't have enough tanks to get us through the next day (Friday).  

The girl at the supply company told me they would only switch tanks out.  Meaning we had to give them an empty tank when they gave us a new tank.  But the empty one was at school.  So, logistically, how do I make that work?  

Well, I hate the small details of logistics.  So, right there my brain wanted to stop working.  But, don't most people own two propane tanks for a grill?  So when one goes empty, you switch it out for a new one then you have time to exchange the empty for a new one, right? So, how the heck am I supposed to switch out one E tank?  It seemed to me that I needed at least one more E tank.  

Plus, I needed the E tank that day so I could take it to school on Friday.  

After 45 minutes, and three people later (the second person finally transferred me to a respiratory therapist who was a bit more reasonable and understanding of the situation) I finally got an order for two more E tanks in exchange for one D tank.  That left me with two full E tanks, one empty E tank, and one full D tank.  And they delivered them that afternoon.  

Terri stayed late for me that afternoon because I was on the phone so long.  And during that 45 minutes, Murphy got home from school and wanted to talk to me about his day (which is very rare).  But, there was no way I could talk to him right then.  So, I had to shoo him away to take care of this stuff for Harlie.  Ugh.  Stuff like that just makes me feel terrible.  I know there's no way around it sometimes, but that doesn't make me feel any better.

Friday

Harlie went to school on the bus with Terri with a D tank.  We got Murphy off to school and Tom left a little early that morning.  I got Cooper ready and took him to school at 8:30.  I left there and went to Harlie's school to deliver one of the new E tanks that was delivered the afternoon before.  

I must say that it felt super weird to be carrying in an oxygen tank to school.  When you push the buzzer to get in the school, they now ask how they can help you.  So, I said, "I'm Harlie's mom delivering oxygen."  I'd rather be delivering cookies.  

So, we switched out the E tanks.  And when we opened the new tank - it's not full.  Seriously?  Ugh.  That's when I wonder why I didn't think about the supply company delivering the tanks to school instead of to my house.  Wouldn't that be way easier?

I tell Terri to call me when it starts to get a little low and I will have to come back and pick them up.  Because I just love driving back and forth to her school.  

I left there and went to the gym.  I signed up for the 9:30 TRX class and got the last spot.  On my way there, I called her pediatrician.  I asked if her current ABs treat pleural effusions.  She said she'd call me back.  

Just as the class was starting, my phone rings.  The nurse said that her doc wants her to have chest x-rays.  I can't believe my denial, but I actually asked if I needed to do it now or if I could wait till after school.  She paused and fumbled over her words a bit (probably because she was shocked that I would ask such a ridiculous question).  I said, "Never mind, of course I should take her now."  And hung up.  

Then I went and did the TRX class.  It was hard - not just the work of the class (because TRX is really hard) but my head wasn't all together for a little while.  But, I felt a lot better after.  Then I ran a quick mile on the treadmill and I felt much better.  

Then I went home to eat breakfast and shower.  Because I'm sorry, but I am NOT going to the hospital looking all a shambles in my work out clothes.  No way.  I can't help but think if I look somewhat put together, then I will be taken more seriously.  

I also called our supply company.  For one, I wanted to ask them about getting a portable oxygen concentrator so we wouldn't have to worry about tanks.  Because they are proving to be a royal PIA.  I got a "no."  But, if this turns out to be a chronic problem, I'll work on that.  I also asked her about delivering to school.  She said they don't like to do that because they are afraid they (the tanks) will get lost.  Seems like an easy problem to overcome considering Harlie is the only child in the school with oxygen tanks.  But, that will have to be a fight for another day.  I got other things to deal with right now.  So, then I ask about delivering tanks during the weekend.  She answered, "Only if it's an emergency."  I replied, "but... it's oxygen."  

Am I missing something?  Isn't needing oxygen, kind of important?  Whatever.  Moving on... I ordered more tanks and asked that they be delivered as late as possible in the day.  Because I didn't know when I'd be home.  But, I did think ahead a bit, and brought in the empty tank that I picked up from school earlier in the morning.  

Unfortunately, it's now close to noon.  My, how times flies!  

I realize that I don't know where to take her for the x-rays.  I mean, I know where it is, but I don't know if her doc has to call ahead and order it.  I can't just walk in there and ask for an x-ray.  So, I called her doc again.  I get the receptionist who tells me that they are all busy and they are going to have to call me back.  I can tell she doesn't know how I am or why I'm calling.  And they close the office at noon for their lunch hour.  So, I really need to talk to someone before noon.  

I wait till just a few minutes before, and call again.  Her doc gets on the phone and tells me to go to the ER.  

Well, now I have to feed and walk the dog.  

Then it dawned on me that I have to have the boys taken care of because I have no idea how long I'm going to be gone.  So, I had to make some phone calls.  Of course my friend Bethany (who's got my back - thank you very much!) comes to my rescue and picks up Cooper and keeps him for the day.  I was going to ease her burden by sending Murphy to another neighbor.  But I couldn't reach her.  So, I had to call Bethany again, and ask her if Murphy could ride his bike to her house after school.  Of course!  So, I had to send an e-mail to his teacher asking her to tell Murphy to go to her house instead of coming home.  

I also called my niece Maggie, who said she could come over around 3pm to relieve Bethany of the boys.  Maggie said she could stay until 5pm (then she had to go to work).  Then Tom would come home.  My mom has the flu, otherwise I would have just had her come over.  

Okay, so I got home from the gym at 10:45.  By the time I did all that stuff, it was a little after 1pm.  Now I realize that I have to pick up Harlie and Terri, and then bring Terri back to my house because she needs to get her car.  There's no way she can go to the hospital with me.  Who knows how long I'd be?  

So, I finally got to the ER at 2pm.  OMG.  I had no idea it was going to take that long to do all that stuff.  

The ER is packed and with Harlie's chair and all her stuff, we were kind of a wide load.  There was no seating for the both of us.  So, I stood up most of the time.  I can't remember how long we had to wait, but it was a good long while.  I've never had to wait at the ER with her.  Ever.  And I had to ask them for an O2 tank, because there was no way my small D tank was going to last us through all this waiting, and then to get us back home.  

I got to see a friendly, familiar face - a nurse that we met through the Steelers club.  We've seen her many times in the ER.  So, that was nice.  

Once we got back into a room, things went pretty quickly, all things considered.  We saw two doctors that have both seen Harlie before.  Went over everything and got chest x-rays.  

She was very playful (and didn't look very sick).  

But then a nurse came in to start an IV (they wanted some blood work and wanted a line for IV ABs, if necessary).  Harlie immediately started to cry.  Break. My. Heart.  I tried to prepare the nurse for the fight Harlie was going to put up.  I told her that nothing I do or say helps Harlie.  I sat down on the bed and put Harlie in my lap.  Then I bear hugged her the best I could.  I should have told the nurse to get some help.  But, I just wasn't thinking, I guess.  

Thank God this lady knew what she was doing.  She got it on the first try!  And that's saying something when you factor in how much Harlie fights and moves.  But, once she got it in, Harlie still wouldn't stop moving.  And by now we are laying in a very awkward, uncomfortable position.  Harlie is purple from all the crying and fighting, her oxygen tubing came disconnected, the alarms are buzzing and her sats are in the tank.  The nurse doesn't want to loose this IV, so she calls for help.

Whew!  After a few more minutes, they were done, and we could leave her alone for a bit.  She was wiped out after that!  

Then the doc came in to tell me that her x-rays showed some pneumonia and/or atelectasis (collapsed lung) on the right side.  They want her to stay on the ABs she's already on, but they want to add a med.  They said the med can be hard to find, so they were going to give her first dose while we were there, through her IV.  

They started that at 7pm and said it takes an hour to run.  Thank goodness I remembered to throw some granola bars and an apple in my bag!  The last time I ate was breakfast.  So, I was hungry.  

I was also really, really tired.  And even though I've done it so many times before, the thought of packing her up, carrying all the bags and stuff and getting her to the car, and home, made me exhausted.  It felt like the car was miles away.  

So, I called my sister, Sandy.  I knew my niece, Jordan, was still home from college, so I was hoping they could help me.  I felt so wimpy asking for such a crazy thing.  But I really couldn't help it.  

I asked her if there was any way they could work out going to my house, leaving someone there to watch the boys and then have someone bring Tom to the hospital, so he could drive us home.  

How awesome is it that they were Johnny on the spot?  Sandy and Jordan were already together and out.  So they left there and drove straight to my house.  Sandy called her husband, Rick, and asked him to leave their house and drive to my house.  Jordan stayed  with the boys and Sandy and Rick drove Tom to MCV.  He got there right as we were getting the paperwork done for discharge.  

Awesome!  Thank you so much Sandy, Jordan and Rick!!!  

We left the hospital and went to the 24-hour CVS to get her prescription filled.  No luck.  They were out of it.  They called another pharmacy (the one that usually has everything but isn't so conveniently located) and they were out, too.  Tom called another one, still no luck.  They could order it, but it wouldn't get here until Monday.  So, we went home.  

I guess we got home close to 10pm.  Tom called the ER doc and told her about the meds.  She said she'd do some research and get back to us.  

We went to bed.  And the doc called us back Saturday morning.  

But, I'm going to have to stop there.  I still have more I want to tell you about, but it is super late and I'm running in the morning.  So, I need to get to sleep. 

More soon!
Thanks,
Christy xo