Friday, March 22, 2013

Holy Cow!

Harlie never ceases to amaze me.  She hasn't eaten orally in weeks.  Which is totally typical for when she's sick or has increased secretions.  However, this afternoon, she came up to me and signed "eat."  The dog was nearby so I naturally assumed she meant that she wanted to feed him.  So, I said, "No, it's not time for him to eat."  Then she pointed to herself and signed "eat" again.  I asked her if she wanted to eat and she said, "yes."  WHAT?  We were upstairs at the time and I was gathering the dirty laundry.

So, we came downstairs and I put the clothes in the laundry room and she brought me her bib.  Okay, so she's serious?  Then she signed "peaches."  Wow.  Just wow.

So, I stopped what I was doing, went and got her some pureed peaches from the freezer, heated them up and we sat down for her dinner.  She ate all the peaches (about 3-4 ounces) and drank 4 ounces of her formula.  And she used her talker to tell me, "The milk is good."  ;-)

Isn't she something?  So, she's going to school on Monday.  Clearly, she is feeling better!  Please keep your fingers crossed that she is on the up and up - for good - and that she can get on that bus come Monday!  We have some exciting plans for Spring Break this year (just one more week away) and I want us to be able to do what we have planned.

Thanks!
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



Sunday, March 17, 2013

My Kidney Stone from Hell

It all started last week.  All the kids had been sick and on Thursday night I started to think I was going to get it, too.  Here's how the week went...

Friday, March 8
I was uncomfortable, but couldn't figure out what was hurting.  It almost felt like I was about to get nauseous.  Or I had to go to the bathroom.  Neither happened, so I just went on about my day.  I did TRX that morning at the gym.  There are a couple of moves where you have to twist your body, and I definitely felt uncomfortable when I did that.  But it wasn't horrible, stop and moan kind of pain.  So, I powered through it.  Then I did all that running around taking Harlie to speech therapy and picking up Cooper and all that stuff.

Saturday, March 9
Friday night was a restless night and I was still uncomfortable Saturday morning, which is why I couldn't run with my friends as scheduled.  However, I tried to do everything else.  And went to a friend's party that afternoon.  By this time, I was probably in more pain than I wanted to admit to myself.  Looking back, I can see that clearly.  I don't have time to go into it now, but there was a mom there who didn't want to get a helmet for her child who has developed a flat head due to sleeping on his back.  It touched a nerve with me, especially since I was already in pain, and short on nerves to begin with.  The thing that always gets me is the "I don't want" thing.  There are PLENTY of things I don't want to do either.  Trust me.  But, I have to.  For the betterment of my daughter.  Once you become a parent, it's not about what you want, it's about what's best for them.  Especially in a medical sense.  Anyway, I tried to keep my mouth shut, but it was really impossible.  Then, I overheard another mom complain that her daughter had to get tubes because she couldn't hear when she had an infection!  Gasp!  Say it isn't so!!  See?  I was awful.  I looked at my friend and said, "I'm hanging on by a thread over here.  Hanging by a thread."  Another mom there had apparently had a rough week and she said, "What more could go wrong?"  Another one of those sayings that I NEVER say - because guess what?  A LOT more could go wrong.  My friend looked at me and then said, "Don't say that."  And then I left.  Thank goodness my friend knows me well and was very understanding and supportive.

Then that night, while I was trying to fall to asleep I felt some sharp pains in my abdomen.  It came in waves and I thought, Great, I have a tumor and I'm going to need a hysterectomy.  Must call OB doc on Monday.  Needless to say, I had a terrible night's sleep and struggled with that pain most of the night.

Sunday, March 10
I woke up and somehow went for a three mile run with my friend Niki, since I missed the run on Saturday.  She met me near my house and it was a hard three miles.  I felt awful.  In fact, I had to walk twice!  Went home, ate and showered.  The pain increased.  And then I peed blood.  I thought, aha!  It's a UTI.  It's a weird UTI, but there are antibiotics, so yippee!  I rushed to the nearest doc and peed in a cup and got some ABs.  Awesome.  Good to go.  Feeling better about things now.

But, the pain increased.  By later on that afternoon, I was in agony.  I was pacing the living room, trying to control my breathing.  I knew then that I did not have a UTI.  The pain was now creeping towards my back on my left side.  Then I remembered something from a few weeks ago...

In February, I had to go to the doc because my back was bothering me.  He took x-rays and suggested I see an orthopedist.  I took my x-rays to my chiropractor.  We talked about what might have been wrong and then he asked me if I had any problems with my kidneys.  I said no and asked why.  He then pointed to a spot on my x-ray and said that looks like a kidney stone to me.

Yep.  That really happened.  And I totally didn't want to believe him.  I've never had one before and I've heard they are a nightmare.

So, as I was pacing my living room, and I could feel all the pain on my left side and back, I knew I had a freaking kidney stone.  I called my friend who's a nurse and asked her what the hospital does for you. In other words, can I do what I need to do at home?  Tom found some pain meds left over from a surgery of his and I took one of those.  That helped and bought me some time.  I really thought I'd be okay.  Then less than two hours later, the meds wore off and I was in even more agony than before.  I knew I would not be able to manage this pain at home.  I was immediately nauseous and could not speak.  The effort of talking made me want to vomit.  It was horrible.

So, my niece Maggie drove me to the ER.  Thank goodness they were not busy and got me right back. They started an IV and got me pain meds (Dilaudid) and anti-nausea meds (Zofran).  They did a CT scan and confirmed my fears.  It was a kidney stone and it was big.  Too big for me to pass without medical intervention.  It measured 7mm x 4mm x 5mm.  I've read that anywhere between 3mm and 5mm need help to be removed.  Awesome.

The doc there said I needed to see a urologist on Monday.  They gave me a script for Percocet.  And we left around midnight.  I was feeling much better and thought I'd be fine with my meds.  But the second we got in the car, I was awful again.  The motion was just too much.  I was in agony the whole way to the pharmacy.  I took my meds the second we picked them up and she dropped me off at home.  I went in the kitchen to get a cup of water and threw up in the sink.

Needless to say, that night was awful.  I took all the meds I could, but they were not touching the pain.  The pain just continued to increase in intensity.  On occasion it would subside for a few minutes and trick me into thinking I was going to be fine.  It was awful.

Thank goodness we know a urologist.  In a running conversation on FB I asked his wife if he could fit me in on Monday and he responded right back.  He told me to call him at 8am.  Awesome!

Monday, March 11
I couldn't move by morning.  I was more than miserable.  I spoke to David at 8am and had an appointment to see him at 8:50.  I was so relieved.  Tom was starting a job that morning, but I couldn't drive with all the pain meds I had taken, so he had to come and get me.  Murphy was home from school, still sick.  And Cooper didn't have school that day, so he was home, too.  Maggie stayed home with them.

We had the appointment and they took x-rays.  David showed me that the kidney stone was all the way at the bottom of the ureter, just before the entrance to the bladder.  He said that usually when the stones are this big, they are found much higher in the ureter because it is so painful.  He said he didn't know how I made it this long.  Considering how weak I was feeling, I really held on to that for the next few days.



He said that he's seen people pass stones this big before, but the chances were slim.  So, he somehow worked miracles and got me in for a lithotripsy procedure that afternoon!  YAY David!!  Seriously!

I told him that the Percocet wasn't cutting it, so he gave me a script for Toradol, Zofran and Dilaudid.  Tom brought me home (I was miserable because I had been in the car).  Plus, there was this weird thing when I lifted my left leg at all. It sent a searing pain in my abdomen.  It was awful.  And when I lifted my left leg to get into Tom's truck, it was like the pain hit me and I saw stars.  The whole way home I had my head over a throw up bag.  It was awful.  He dropped me off and then went to get my meds.  Then I layed down and tried to nap until it was time to go to my next appointment.  My other niece, Jordan was home from VA Tech on spring break, so she came over to drive me to the lithotripsy appointment.

That procedure uses sound waves while you're under anesthesia.  They hit you like 3,000 times in an hour.  I felt like crap waking up.  But, at least I got a good break from feeling pain.  At this point, I had to drink tons of water to try to flush out the broken up pieces.  They said when I left that it broke up a good bit, so I was hopeful.

Tuesday, March 12
However, things continued to get worse.  And even the new meds weren't keeping me comfortable.  Actually, I would have taken discomfort.  This was pure pain.  Serious pain.  I woke up at 2:30am in misery and took my pain meds.  I laid in misery until well after 4am.  Things were crazy in the morning and I had to help with Harlie's hair, and that stuff.  I am the one that gets Harlie ready, so it was a new thing for Tom and it made for painful mornings in that sense, too.

Somehow we got everyone off, except for Murphy, who was still sick.  I sent him upstairs to hang out in my room and watch TV.  Then my friend Sally called and said she was bringing me coffee.  She came over and I really was feeling okay, for the most part.  I had just taken the dog for a walk.  I was uncomfortable, but not in agony, so that was a nice break.  But, just a few minutes after Sally arrived, I went downhill fast.  I couldn't remember what meds I took and when.  I tried to write them down, but I couldn't remember if I actually took the pill or not.  So, Sally helped me count the pills to see how many were missing from my list of what I had taken.

And then I pretty much just fell apart.  I was in agony and couldn't get comfortable.  No matter my position, I had to move from it, constantly searching for a position that didn't hurt so freaking much.  She asked me if I had a heating pad and I told her it was in the bathroom in my room upstairs.  She opened the door and Murphy was laying on my bed.  Clearly, he was surprised to see this stranger in the doorway (he's met her before, but that was months ago).  She said, "Hi, I'm Sally and I'm a friend of your mom's."  And he said, "Can you help me turn on the TV?"  Kids!  

Anyway, she got the rice bag, but it didn't help.  Not long after, I started vomiting so Sally called David and he called in another script.  She went to CVS and picked it up for me, along with some treats for Murphy.  At some point, Sally had to take Murphy's temperature.  It was truly crazy.  Sally was running all around my house trying to do whatever she could to help me.

About that time, my friend Lynda came over to bring me lunch. I took the new meds, but promptly threw it up.  Nothing was staying down.  Which also meant that no pain meds were going to stay down, which was a nightmare!  Sally said it was time to go the ER.  This couldn't last any longer.  So, she called David and told him what was going on.  He called ahead to the ER to give them a heads up and let his partner know to check on me.

Lydna said she would stay with Murphy (Sally and I just left, there was no saying good-bye) and she made him a sandwich and took it upstairs to him.  I can only imagine what this morning looked like from his perspective.  That poor kid.

It was pouring raining about now.  We pull up to the ER and she ran and got me a wheelchair.  Since I was vomiting when we were leaving, they were changing out the bowls I was throwing up in.  In a rush, Lynda grabbed the first bowl she could find which just happened to be the clear, salad spinner bowl.  haha  Can't help but laugh at that.  So, as she was wheeling me into the ER, I was vomiting into a clear bowl - so everyone could see what was going on.  ;-)

Unfortunately, the ER was packed (not that I could see, because my head was down and my eyes were closed).  But, they said there were no rooms and as soon as one opened up, I would get it.  Tom met us there, and got there just a few minutes after we arrived.  David's partner came out into the waiting area to check on me, which I thought was so nice.  But, all I could do was raise my hand a bit - I couldn't speak at all.  Or breathe.  It was awful.  And I am not joking - I wanted to die.  Actually, I thought for sure I was going to pass out from the pain.  Which, would have been awesome.

A nurse brought me out a cold washcloth for me to wipe my face and neck.  And after a little while, Sally said that one of the nurses came out and said this couldn't go on any longer.  She grabbed my chair and brought me into an office and started my IV and got me some pain meds and zofran.  I could then speak - but was still weak, and still in pain, just a little less pain than before.  We waited there until a room opened up.  Then David got there and we went over our plan.

I was being admitted.  They were going to load me up with fluids (since I couldn't keep anything down) and were going to try to keep me comfortable with pain meds and anti-nausea meds.  While the lithotripsy broke up the stone, the pieces were still too big to pass.  So, we were going to have to do surgery in the morning.  He would have to go up through a catheter and use a laser or something to break up the stone pieces into smaller pieces and then remove them.  He would put in a stent to keep my ureter open since it was swollen and irritated.  He said he could do it at 7:30am or his partner could do it sometime later on in the day.  I knew what he was getting at.  So, I said, "Does this mean you're going to see me naked?"  And he said, "Yes."  He said he talked to his wife about it, and she was fine with it (since we all know each other).  The whole situation was just really funny, even in pain, I could recognize that.  But, another minute like this was too much.  So, I said I didn't care.  Just do it.  The sooner the better.

My friend Niki came up to the ER to visit and then Tom went home to get some stuff.  Then my sister came to visit.  Then Sally came back to see me again.  Tom stayed till he had to leave to relieve our nurse.  He was so sweet.  He really didn't want to leave me alone.  But, we had no one who could stay with Harlie for the night, so he had no choice.  My Mom and Dad came after he left and stayed till about 10pm, I think.

The pain was always there.  As was the nausea.  I dreaded the night.

Wednesday, March 13
It was a long night.  The anti-nausea meds didn't work at all.  And any movement could spark a vomiting episode.  So, I tried to lay as still as I could.  I couldn't even check my messages on my phone.  Trying to scroll on my phone, or read the words made me even more nauseous.  It was crazy.  I had a pain pump that I could press every eight minutes.  The problem with that was that I was afraid I would get even farther behind my pain if I fell asleep and went a while without pressing it.  Plus, I was afraid I would over-take the meds if I pressed it all the time.  Ugh.  Was the pain causing my nausea or was the pain meds causing it?  It was hard to tell what was going on and to find the right balance.  My nurses said the pain was causing it and told me to press it whenever I thought about it.  Okie dokie.

I will say that my nurses were great.  They were on the spot with everything I needed.  At 11pm I asked my nurse when I could get the Zofran again and she said, "Not until 2am."  UGH!  Are you kidding me?!  I really thought I would never make it through the night.  But, at exactly 2am, she came into the room and gave me the meds.  I know because I was awake.  As I was the ENTIRE night.  I would close my eyes and then when I opened them, three minutes had passed.  Three minutes!!!  Ugh.  Plus, the Dilaudid was really screwing with my mind and not allowing me to sleep peacefully.  I would think someone was in the room, when no one was.  Or I would see weird images - almost like a dream. Except I was awake.  I got up to pee, and threw up in the trash can.  It was lovely.  I was an absolute mess.  I felt just horrible in every way.  I thought, this has to be rock bottom.

Oh, I shouldn't have thought that.  That definitely came to back to bite me, but more on that in a while...

Anyway, 6am finally arrived and so did Sally.  She stayed with me until they took me back into the OR waiting area.  Tom couldn't get there until the kids were off to school (although Murphy was still sick). As the last docs and nurses were talking to me before taking me back, I couldn't stand the sound of my voice any longer!  I sounded so whiny and weak!  It was awful!  But talking was so hard and required so much effort!  And the effort made me want to vomit.  So, I couldn't stop talking like that.

I don't remember going to sleep.  But, as you usually feel when waking up from anesthesia, I felt like crap.  I can't tell you how many times I thought of Harlie during this whole ordeal and how many times she has had to deal with this kind of thing - but without the understanding that I have.  Breaks my heart.   Like, when some of the IV meds burn when going in.  Or are cold when going in.  Or when bright lights come on and you have to get stuck because they need a blood draw that can't come from the IV (that happened before surgery).  And waking up from anesthesia - how many times has she done that???  Ugh.

Anyway, he put a stent in, which was uncomfortable.  So, while I was better, I was not pain-free.  But, the pain and discomfort was manageable and at least there was a major decrease in nausea.  He said the surgery went fine.  He sent the stone fragments off to be analyzed.  So, he took a picture of it so we could see.  Here it is...



I had to take a picture with my cell of the photo he gave me.  So, it's a little fuzzy.  But, as you can see, my left kidney was pretty much blocked close to 100%, so it was completely backed up.  And the piece that you see was just one fragment of the whole stone.  Crazy.

They discharged me sometime around noon, with some extra meds, too.  He added an antibiotic and Piridium for spasms.  Tom brought me home and stayed with me the rest of the day.  I took a nap.  I know I am so sleep deprived because I haven't had a decent night's sleep since Thursday or Friday.

Also, that day, of course, Cooper had a fever at school, so he had to come home, too.  Awesome.

Thursday, March 14
Since my pain was much more in control, I got up to help Tom get Harlie ready.  It was picture day at her school.  But, she was a mess now, too.  After we got her dressed, I realized she had a fever, too.  Holy cow.  When is this going to end?!  So, we called her bus driver and told her not to come.

Cooper stayed home, too.  He had a rough night last night and was up several times, and was super hot.  Poor kid.

Murphy finally went to school today for the first time in a week.  Tom is sick now, too.  Although in order for him to get some rest, he had to go to work.

I now have a horrible cough.  I think it's official - my house is a MESS.

Harlie had a doctor's appointment today to get the word on whether she could wear her BAHA again.  Terri took her for me (my niece drove them) and all went well.  Harlie is now sporting her BAHA with NO soft headband!  Woohoo!  That's so exciting!

Some friends came to visit me this morning.  Allison and Kathleen came by and brought dinner from another friend of ours and some cake.  And they took Rooney for a walk.  That was so helpful!  I was definitely not up for walking him today, that's for sure.  And it is always so rejuvenating to see friends and know how much you're loved when you're going through a hard time.

By early afternoon, Cooper was vomiting.  Great.  But after more Tylenol and some down time, he was up jumping on the couch by night.  He is something.  But, since he had a fever today, he will not be going to school tomorrow, either.  Same with Harlie.

After that, my Mom came by to come and get me and take me to my appointment to have the stent removed.  That was very quick and easy, which was great.  It definitely felt weird, but it didn't exactly hurt, either.  The nurse said I might still feel uncomfortable for the next 24 hours or so.  But, so far it has been completely manageable and it is such a huge improvement from how I felt just a day ago!  How could I complain?!

Friday, March 15
I knew I felt horrible the second I opened my eyes.  Since Harlie and Cooper were both staying home from school, I slept in and Tom got Murphy up and ready for school.  I stayed in bed for hours.  My friend Bethany came to walk the dog for me.  Oh, I can't begin to tell you how thankful I am for all the help we have received!  Tom called and said he was coming home sick.  He felt horrible.  I finally forced myself to get up at noon.  But that was only so we could go to the doctor.  I felt pretty positive that we had the flu.

Yes, the flu.  I haven't had the flu in ages.  In fact, I cannot recall the last time I had it.  But, I knew this was no ordinary sickness.  Every part of my body ached.  I felt like I had been hit by a truck.  And I had not even had a moment to catch my breath from the kidney stone!!!  What gives???

Tom and I went to the doctor and took Cooper with us.  We were a pitiful sight.  We tested negative for the flu.  But the doctor said that he thought we had it anyway.  I'm not totally sure how that works, but whatever.  He said he bet Cooper has it, too.  So, he gave us a script for Tamiflu and then I called the pediatrician and he called in some Tamiflu for Cooper and Harlie.

I'm thinking that Murphy had the flu last week.  He was out for more than a week.  I guess they assumed he had the stomach bug or something when I took him to the doctor last weekend since he had vomited.  But he definitely did not have the stomach bug.  And he's still not back to 100%.  He most likely gave it to all of us.  Cooper has had a fever off and on since Tuesday.  Harlie had a fever on Thursday (and she rarely gets a fever).

Friday night was horrible.  Harlie spent most of the night coughing secretions she could not clear herself.  So, that meant we were up, taking turns, suctioning her.  Oh, how I long for a good night's sleep!!!

Saturday, March 16
I woke up feeling a tad bit better.  And Tom was definitely worse.  So, I got up and handled the morning stuff and let Tom stay in bed.  Brandy came over to help.  Since Harlie's sats were so low (when not on oxygen they were in the low 70s) I felt like the oxygen without humidification would just be asking for more trouble.  So, we carted down the whole IV pole and trach humidification system and put it next to the couch.

Don't you love my photography skills?

A throw-up bowl is never far away.

Our friend Michelle brought coffee for Tom and Happy Meals for the boys.  And she got Harlie the girl toy from a Happy Meal since she knew she doesn't eat.  Can you believe that?  That was so, so thoughtful!!!  And as if that wasn't enough, she walked the dog for us!

We all settled on the couch and watched The Sound of Music together.  I sat next to Harlie and literally suctioned every few minutes.  As the day wore on, I felt worse.  I started dreading the night again.  I felt really, really tired.  Like more tired than I have ever felt before.  The kind of tired that made me afraid that I was going to make a mistake taking care of Harlie during the night.  What if I missed a sign that things were getting worse?  What if we slept through something?  I just didn't feel confident in myself and my ability to make good decisions for her.

These are the moments that make me sad.  She is not in the clear.  She is not a healthy child.  And her bouncing back from a sickness is no guarantee.  What if this is the sickness that takes us down the road we don't want to go down?  What if this one is just too much for her heart?  She's been on oxygen for all but three weeks of 2013.  Is her body getting tired?

So, I tried to find a nurse to help us for the night.  Jennifer, who used to be one of Harlie's nurses, was out of town.  But, I messaged her and asked her to message her nursing friends to ask them.  I offered to pay them directly.  But, unfortunately, no one could do it.  Tom was feeling pretty sorry for me.  So, he said he would take Harlie duty for the night.

Thank goodness it wasn't that bad of a night, all things considered.  Even though when we took her upstairs to go to bed, she had to come off the oxygen for a few minutes (like three).  And when I checked her upstairs her sats were 67!!!  That's just too, too low!  What in the world is wrong with her?  Well, I guess the flu.  Which we've managed to avoid her whole life up until now.  Which is kind of amazing, isn't it?  Well, I don't know.  She gets the flu shot each year.

Anyway, it is now Sunday afternoon.  And I have to get off this computer.  I am hoping from here on out we'll all be on the up and up.  I think it's safe to say that we are due.

But, before I go, I just wanted to send out a heartfelt thank you to everyone who made our life better in the past two weeks...  Thank you David, Sally, Lynda, Niki, Bethany, Michelle, Allison, Kathleen, Glen, Dana, Cami, Mike, Maggie, Jordan, Terri, Brandy, my Mom, Dad and sister, Sandy and to everyone who sent us messages, cards, called, etc.  Also, thank you to those who contributed to our wonderful gift of two professional house cleanings!!  Yes, many of our friends contributed towards house cleanings and our first one is Friday!  I can't wait!

I know I've said it before, but with our luck not being the best, we are so very lucky and blessed to have such a wonderful supportive group of friends and community.  We truly couldn't live this life without it!  Thank you, from the bottom of our hearts!

Much love,
Christy xo

Saturday, March 9, 2013

Sick Week

You know, I really, really wish I didn't have so much to blog about.

So, what's new?

Cooper was sick on Monday and Tuesday.  On Sunday night he came into our room and I woke up to hear him struggling to breathe.  He had stridor (sounds like they are struggling to inhale, and silent when they exhale) and couldn't talk.  He coughed - and it was definitely croup.  His airway was swollen, which is why they make that barky cough sound and stridor.  He slept with us the rest of the night.  He stayed home Monday and Tuesday.

It snowed on Wednesday.  I got up at 4am to let the dog out and it was raining.  I woke up at 6:30am to the phone ringing.  Then Tom yelled up that it was the school canceling for the day.  What?  I looked outside and it was snowing and the ground was already covered.  Geez!  Now for those of you that don't know, Richmond is totally wimpy in the snow.  And it was wet, slushy, slippery snow.  It was like a blizzard.  The boys were so excited.  They were dressed in snow gear by 7:30am!  But, their outside fun didn't last long.  The wind was blowing so hard that it was hard to see - the snow was blowing sideways.

Of course everyone in my area was totally ecstatic on Facebook about it being a stupid, freaking snow day.  I guess I would agree if I had all healthy children.  But, I don't.  Especially right now.  It kills me that Harlie has to miss out on stuff that she probably would love to do, if she were healthy.  Ugh.  And snow days when Harlie is on oxygen piss me off.  Plus, snow is such hard work!  I have to help get the boys dressed in all their snow gear, boots and gloves.  They go outside for five minutes and they come back in, get snow everywhere, need help getting their wet clothes off and they run off - leaving the laundry room a total wet mess.  Then you have to dry what was wet, because they are going to want to go out again as soon as I sit down.

I probably sound a bit bitter.  But, it's just that I'm tired.  I was already tired - both mentally and physically (probably more drained than tired, really) from the past week.  So, add a snow day, and I'm about done.  No happiness here.  Nope.

Luckily, after two outings, Cooper exclaimed that he "was never going outside again!"  So, that kinda made me happy.  ;-)

By Wednesday night, Harlie was running around looking quite happy.  I asked her if she wanted to go to school and she said, "No!"  Then she said, "No, I don't want to go to school!"  Granted, it was not nearly as clear as that - however, I could totally tell that's what she was saying.  I promise!  But, she was being funny when she said it - so I didn't take her so seriously.  She was definitely going to school on Thursday.

Thursday, there was a two-hour delay.  Which, actually worked out okay, except for the fact that Cooper was only at school for two hours.  That didn't give me much of a window for a little bit of freedom.  That was my first day without anyone in the house in what feels like forever (maybe three weeks?).

But, I can tell you that it felt FANTASTIC to put Harlie on the bus!  Even though she said didn't want to go, she was the first to get out the house and she hurried down the driveway.  I sent a small oxygen tank with them, just in case.  She had a great day, and they said she was happy to be back at school again (it had been over two weeks since she had been there).

I got some laundry started at home and then went to the gym to run a few miles on the treadmill.  My running time has been about nothing the past few weeks, so it felt good to get a quick one in.  I was feeling crappy all week (my spirits, I mean).  Then one short run had me feeling more like myself again!

Then I went and picked up Cooper from school.  Then my Mom came over to sit with him while I went to a training thing at Harlie's school for her communication device.  A Prentke Romich rep came to the school to train Harlie's teacher, speech therapist and instructional assistant on the device.  I found it to be very helpful and I think they did, too.  The device can be overwhelming when you look at it.  They all left understanding it so much better, which will help them enforce her to use it more during the day.  The more she uses it, the more she can express what's going on in her head.

One day, Prentke Romich's FB page posted something about a Wacky Wednesday contest of some sort, where you send in the funny things your kids have said using a communication device.  One of the comments was from a mom who said her child said, "I want ice cream, color brown."  I thought that was so cute.  And I live for the day when she can tell me what she thinks or wants (without me anticipating what she's going to say).

Anyway, the rep also brought two new devices.  I noticed on the website recently that they are no longer making the Vantage Lite (the one we have).  I didn't realize it was because they came out with something better!  They are now using the tablet technology, which makes for a much lighter, smaller device.  And lighter means that she might be able to carry it herself, which means she might just take more of an ownership in it and use it more.  I have hope!

The Accent 700 only weighs 1.95 pounds, and is smaller than an iPad.  The Accent 1000 weighs 2.95 pounds and is bigger than an iPad.  The language and icons are the same.  So, I could back up our current device and then just load it in the new one and nothing will really change as far as how Harlie uses it.  The buttons are all in the same place, and mean the same thing.  The only negative is that the smaller one clearly has smaller buttons.  There are still 84 buttons per screen, but the screen is so much smaller.  I'm just a little worried that they are too small.  But, the rep said he would bring them both to a speech therapy appointment and let Harlie test them both out to see how she does.  Then we can order one for her!  So, that's exciting.

That night we got a care package addressed to Harlie from the children's department of Saxon Shoes.  Can you believe that?  They all signed a card and sent a bunch of stuff, like a LaLa Loopsy girl (which she LOVES), a coloring book, crayons, lip gloss, socks, shoe string charms, etc.  How incredibly sweet and thoughtful! I know our friend, Aline, had to have been behind that.  Thank you so much to Aline and all the wonderful employees there!  We are so grateful for your support!

Friday morning I sent Harlie off to school again.  And I sent the oxygen tank again, too, just in case.  Well, it was a good thing because by 10am she was back on it.  Grrrr!  What is going on with her???  Terri said she was having to suction her every few minutes!  Ugh!  That is NEVER a good sign.  I have more to tell you about this day - but I will have to make that it's own post because this one would be way too long.  Soon.

Anyway, Friday morning also brought us a sick Murphy.  He so rarely gets sick (thank goodness!).  I think he's only missed one day of school so far (and that was for when we went to Pennsylvania).  He had a very sore throat and a fever.  Unfortunately, Fridays are my busiest days, so luckily my Mom was available to come hang out with him while I ran around.  We are almost done reading the book Wonder and we just read the part where his school watches The Sound of Music.  He asked me what that was so I pulled up some song scenes on you tube.  I love that movie.  So, I asked my Mom if she had a copy (and of course she did!) so she brought that with her for them to watch.  As I came and went from running around, Murphy appeared to be captivated.  He said he really liked it.

Despite Harlie's increased coughing and suctioning, I still took her to speech therapy.  She hasn't been in weeks.  She did great, despite everything.  I don't think she considers it work.  Which is great.  Amy is great with her.  I have more I could write about this, too, but again, I'll have to save it for another post.

After that we were all home for the day.  And then Harlie's hearing impaired (HI) private teacher/therapist came to work with her, too.  All the while, her coughing and suctioning needs were increasing.  UGH!  Seriously, when is she going to be well????  Poor Terri couldn't even eat her lunch because she was suctioning so much.  Maybe she lost her appetite.  Can't blame her, really.  Every cough produces secretions.  And they have to go somewhere.  When she's sick like this, it's just plain disgusting, as my friend Susan does a great job of writing about in her most recent post.

It's so incredibly frustrating that she's sick again.  Maybe I rushed her back too soon.  I don't know.  Trying to make sound decisions for her with limited information is completely wearing me out.  I'm back to feeling like no one can help us with her medically.  And that's such a sucky feeling!  I was talking to Susan about it earlier in the week.  I told her that I think I might have a vague understanding of what caregiver burnout must feel like.  For example, putting Harlie to bed requires ten steps that aren't required when putting the boys to bed.

I have to:

  1. Change her trach ties (or trach depending on the night)
  2. Put special paste around her g-tube (both morning and night)
  3. Put lotion on all her scars (she asks for it for her leg, it must feel tight or something) - she has a lot of scars, too!
  4. Put peroxide and bacitracin on her surgery site for her BAHA (both morning and night)
  5. Put drops in her ear (she's woken up with it being bloody three mornings in a row)
  6. Put her pulse ox probe on her toe and turn pulse ox on
  7. Turn on her air compressor, oxygen concentrator and humidifier through her trach collar and hook her up
  8. Give her night medication and water through g-tube
  9. Repeatedly suction while doing all the other stuff (especially when she's sick)
  10. Clean her hearing aid with an alcohol swab

And that's just to get her in bed.  That doesn't count when I have to get up throughout the night to empty the condensation from her circuit or suction her.  The reason why I feel like I might have a vague understanding of caregiver burnout is because by the time I take out her hearing aid (the last thing I do, because I read to her and tell her I love her when she has it in) I am DONE.  And when it comes to opening the drawer and taking out that alcohol swab and cleaning her aid, it feels like someone just told me I have to walk to the nearest shopping mall.  While carrying my car.  The "little" stuff just doesn't feel so little anymore.  Everything feels so big.  And taxing.

Friday night she coughed all night long.  The entire night.  We still have to use a baby monitor so we can hear her when she needs us (and hear the alarms, too).  So, when she coughs - we hear it.

Then at 4am, Murphy comes in our room and says, "Mommy!  I feel like I'm going to throw up!"  So, of course I yell, "Well get to the bathroom then!"  And so he ran, and luckily, he made it.  I, being an awesome mom, tossed him a washcloth from afar to clean his own face.  No, not really.  I wiped his face.  Reluctantly.  And then washed the skin off my hands.  NO GI BUG FOR ME, PLEASE!

I went downstairs and got him a throw up bowl, a Gatorade and some Tylenol (he had a fever).  And then I put him back to bed.  He slept the rest of the morning.

But, it was a long night.  Tom and I were absolutely miserable.  This house has had a sick person in it for too long.  Something's got to give.  Oh, and I forgot to mention that ever since Harlie's ER and hospital stay more than a week ago now, she has had several accidents per day.  I don't know what is going on with her.  Luckily, no sign of blood.  But, something isn't right with all these accidents.  She is back in pull ups again, and I'm trying to be patient but it is getting super annoying.  Clearly, I need to make a GI appointment.  Which, I have decided to call one at Children's National Medical Center in DC.  I have heard from several people that their GI department has stepped it up in recent years.  And I just can't take the chance of having a repeat of our last experience.  No way.  The fact that I would rather drive to DC proves it.

So, it's now Saturday and I was supposed to meet some friends for a six mile run this morning.  But, to be honest, I was not feeling well.  Plus, I was so tired from our sleepless night.  So, I skipped it this morning.  Which was a good thing because Murphy got more sick.  He was crying because his throat hurt so much.  I thought maybe he had strep.  So, I was going to take him to the doctor.  I told him to go upstairs and get dressed.  While he was sitting at the top of the stairs getting dressed (I don't know why he likes to get dressed there!!) he threw up.  All down the stairs.  Thankfully, our stairs are hardwood instead of carpet.  But, oh what a mess!  The poor guy was crying and I couldn't even get to him.  And he had thrown up all over himself and his shoes.  Ugh.  I went into the kitchen (Brandy was working) and we had to laugh.  I felt bad laughing.  Trust me - I wasn't laughing at Murphy, just at the whole situation.

So, we got that all cleaned up and got Murphy all changed and washed.  And then we went to the doctor with our throw up bowl.  The office was super busy - seems this winter has been hard on a lot of people.  He doesn't have strep.  So, she gave us a script for Zofran.  And he hasn't vomited since.  But, he's been miserable!!  He hasn't said a word all day.  And his fever this afternoon was 103.9!  I feel so bad for him.

Harlie's coughing lasted all day long.  Except for a brief period when she fell asleep on the couch.

Harlie.  Miserable.

Murphy.  Miserable.


Them and the dog (who wasn't miserable).

She must have felt sorry for Murphy, too, because she let him have her spot on the couch and her blanket and pillow.  She can be sweet when she wants to be.

Well, this post has been far too long.  As has the week.  My fingers are crossed that things will start looking up soon.  Real soon.  Because I think I'm hanging by a thread over here.

Thanks for reading and thanks for all your love!
Christy xo


Wednesday, March 6, 2013

A children's hospital for Richmond

I hope I don't regret writing about this... but I have been feeling so utterly embarrassed for a few days and I'm hoping that telling MORE people about it will help?!?!?  Sometimes I think I'm so goofy it's not even funny.  But, the truth is that writing here doesn't feel like I'm talking to a lot of people.  It feels like I'm just writing in a diary, and I usually feel better afterwards.  So, I guess I'll give it a go.

Okay, so you know how we had that awful experience in the hospital, right?  Well about a week ago we got this invite to attend this discussion about building a full service, free standing children's hospital here in Richmond.  A group of pediatricians started an organization called PACK (Pediatricians Associated to Care for Kids) to try and get this movement going.  I think there's been talk of building a children's hospital for a really long time, but too many problems arise and I guess they just haven't been able to figure out the solution to those problems.

I will try to explain the current situation and I hope I'm close to being accurate.  But, don't hold me to anything, okay?

The hospital that I think offers the best pediatric care here in Richmond is VCU/MCV.  The pediatric department is within an adult hospital.  They are trying to make some changes and one of those changes was their name - Children's Hospital of Richmond at VCU.  They have the association with MCV (Medical College of VA).

If a full service, free standing children's hospital were to be successful here, they would need the association with a medical school (clearly MCV would make the best sense since it's here).  The problem I think, is that VCU isn't on board with the whole idea.  It's complicated.  And I have asked several doctors I know, and I still walk away confused.  I just don't understand how it all works business-wise.  I think a little bit is that they think they are already providing what we need.  But, for what it's worth, we've been patients at three dedicated children's hospitals and I can tell you, for a fact, that Richmond doesn't have anything close.  It's not the physicians that are necessarily lacking (although don't get me started about the one from last week) and keep in mind that I love all her doctors here.  It's the facility.  The building.  The environment.  The passion and attitude of all the nurses, doctors and staff.  It just seems that if they combined efforts, an even better system could be available to our kids.  And how could that be a bad thing?

So, PACK is trying to get the community educated.  It's hard to believe, but most people who live here have no idea that we really don't have a children's hospital.  And if they know about VCU/MCV, they most likely would take their injured/sick child to the closest hospital for convenience instead of going to the location that would give the best care.  MCV is downtown and not convenient and most of the parents where I live would take their kids to St. Mary's instead.

Anyway, I knew about this movement, but to be honest, I just don't have the energy.  My plate is full and my energy is spent in other areas.  But, then we had that awful experience.  And while MCV has usually been satisfying, all things considered, this time they came up short.  The care in the GI specialty is inadequate.  Period.  And quite frankly, I'm betting there are some other areas that are the same.  When it takes weeks and weeks to see a pulmonologist (even if the child has pneumonia) I'm thinking they are short staffed and over worked.  And when you're the mom of a kid like Harlie, that sounds kinda dangerous.

This "meeting" was on Sunday night.  I was still tired from the events of the week, but we made arrangements and went.  I was really surprised at the number of people that were there on a Sunday night.  We're guessing there were about 150 people in attendance.

A few moms spoke and told their stories.  They had a few pediatricians and a pediatric anesthesiologist who spoke as well.  Everyone who spoke did a great job.  At one point they said they wanted to hear from the audience - stories, questions, whatever.  Tom tapped me on my leg and said that I should say something.  I guess at the time I wanted to tell them that we are a family that has had to travel to four separate hospitals, here, Norfolk, DC and now Boston.  Why did I want to do that?  WHY?  As I was sitting there, I knew if I were going to speak I had to just do it and get it over with.  If I thought about it too long I was going to chicken out.  I should have chickened out!!  But, I didn't.  And I freaking stood up in front of all those people and told them as briefly as I could about Harlie and how we are now having to travel to Boston.  I don't know how long I spoke.  It seemed to be very quick.  But as I remember some of the things I said, I can't believe I got that much information out that quickly!  I must have been talking a mile a minute.  Well, I was pretty nervous.

I think the second I stood up and she gave me the microphone, I thought, What the hell am I doing?!  I wanted to say, Never mind, forget you ever saw me.  But, it was too late.  Instead I told them that my daughter is 6 years old and has had 32 surgeries, 5 on her heart, 3 major jaw reconstructions, 2 craniotomies, she's had most of her right lung removed, etc. and blah, blah, blah.

As I was talking and looking at the shocked looks on people's faces, it occurred to me that her medical history sounds really bad when you just blurt it out like that.  It doesn't feel as bad when you live it day to day.

At one point during my... whatever you want to call it, I realized I didn't know how I wanted to wrap it up.  What was I trying to say?  What was my point for crying out loud?!?!?  Ugh.  I would have been better off thinking about it a little longer before raising my stupid hand.  It's all Tom's fault anyway.

I think I wrapped it up with... so, now we're traveling to Boston and it's amazing, blah, blah, blah, so having a children's hospital here would be really great.

Seriously??  So, looking back, I feel like a total tool.  I've been trying to not be so hard on myself, but I can't help it! I wish I could go back and never stand up.  As I tried to go to sleep that night I literally was in physical pain from the embarrassment.  I wanted to crawl in a hole and never come out.  Before the Florida sinkhole disaster (so sad!) I would have said, "I wanted the ground to open up and swallow me whole" or something like that - but I will NEVER be saying that again.  EVER.

I've been thinking a lot about it - trying to make my feelings go away.  But, it's complicated.  Here's what's going on in my head...

I don't like to be the center of attention.  I just want to live my life, have my wonderful friends and family and keep on trucking.  When I write here, I don't make anyone read it.  Ten people might be reading, or maybe hundreds.  I don't know.  But, I'm not making you do it.  Standing up and holding a microphone... well that feels like you're making people listen to you.  And everyone was looking at me.  I'd rather be in the audience.

I don't like to complain nor do I want to be viewed as a complainer.  Those people only know what they saw and what I told them in those few minutes.  They don't know the real me.  What did they see?

I'm clearly conflicted between living my life in private and sharing my story.  I've been asked about local news media before, and the answer has always been, no thank you.  Some days I think, her story needs to be told!  And some days I think, why should anyone care about her story?  Why does it matter?  It's just our life.  And we are living it happily.  So why is it a big deal?

I should have said something different.  What I should have said is that out of her 32 surgeries in the past 6 years, only 3 have been done in Richmond.  THREE!!  Which means that during the most stressful times in our life, we have to split our family apart, leave our children with others, and travel to another city, without any personal support network and no visitors.  This is considerably more difficult emotionally, and financially.  Tom has to pick and choose which surgeries he can be there for - and most of the time he can only stay for a few days.  Although, even after thinking about that - I don't think many people could relate to that.  Let's face it, we're not the norm.

I think it's safe to say that I'm better when I write my thoughts down versus jumping up and speaking to a crowd on the fly.  Seriously?  Have I lost my mind???

Thank God a few people said, "Thank you for sharing your story" on our way out.  I'm hoping that means they didn't see me the way I fear they did.  I would also tell myself that no one is going to remember what I said.  But, when I stood up and turned to face the crowd (we were sitting near the front) I noticed that it was being recorded.  As in video.  Awesome.  Can I go cry now?

I will say that overall, I'm glad we went (not glad I spoke, of course).  And for all my local readers, I want to share this...

One of the pediatricians that's passionate about this hospital being built asked the crowd if we knew where to take our child if he or she broke an arm.  Because there is only facility in Richmond that has a pediatric orthopedist on call 24/7.  "Do you know which one?" she asked.  She didn't say.  She then went on to say that her daughter broke her arm.  And she took her to a place that she thought was good.  The ortho (not peds) set her arm, which she found out later, was set incorrectly.  She then had to go to a peds ortho and have it re-set, correctly.

Another point they made is that all our pediatric hospitals are in adult hospitals.  Which means that our kids have to conform to the facility, instead of the facility conforming to kids.  I'll give one example of that... the elevators coming from the parking deck at MCV.  There are two.  And they are really small (and slow).  There are 8 levels, I believe.  More times than not, an elevator would stop on our floor and we couldn't fit in it with Harlie's chair.  And it's a small wheelchair-type stroller.  I've had to wait for several elevators - before one stopped that we could fit in.  It's not fun.

Anyway, I hope that we have smart enough people on both sides that they can figure out where the problems are and how to fix them.  As one of the doctors said on Sunday night, every other city our size has figured it out.  Why can't we?  So, if you're local, please check out the PACK website and read the FAQs.  

Okay, that's it.  Let's never speak of this again, okay?  ;-)

Thank you!
Christy xo

Saturday, March 2, 2013

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