Lots of updates

The past few days have been especially difficult.  Way too much to do, way too little time.  I'm spread too thin.  Things, important things, aren't getting done.

But, before I get into that, here is something I haven't blogged about yet.

Murphy turned NINE years old on May 11th.  Gasp.  Nine!  How did that happen?  He was such a cute little bugger.  Here he is at two...

Crazy how fast time goes by.  Life was so different with this kid.  Those were a glorious 2.5 years. How carefree and naive we were!  And we were never sad.  My, how things have changed.

Well, being the awesome mom that I am, last year his birthday party was in August or something.  Pathetic.  So, this year, I thought I would outdo myself and have his party in May.  Late May, but still.  I know!  I'm good, aren't I?

We took him and a few friends to play putt-putt golf.  Then we went to Sweet Frogs for frozen yogurt and then home for a movie and a sleep-over.  I was super impressed when I woke up at 1:30am and heard silence.  I went downstairs to check on them and the tv was off and they were all in their sleeping bags, sleeping.  Way to go, boys!  I have a picture of them at putt-putt (the one and only picture we took, oops) that I want to send to all the parents with a note.  I hope I get to that item on my to-do list soon.  If you're one of the parents, don't hold your breath.  My intentions are good!  I promise!  Follow through, not so much.

And here's why...

Our last two days in a nutshell:

Wednesday, May 29th
7am - Run 3 miles
8am - go to Lowe's, buy dirt to plant flowers (preferrably before they die)
11am - Rooney, vet appointment
2pm - Dr. Dodson, ENT appointment, Harlie
5pm - Swim practice, Murphy

Thursday, May 30th
Terri off (no nurse means no school if I can't take Harlie myself)
10am - Dentist, Murphy and Cooper
1:15pm - Feeding Clinic appointment, Harlie
3pm - Hearing Impaired therapy, Harlie
5pm - Swim practice, Murphy

It might look like appointments are spaced out enough.  But they aren't.  There's no time to pee or eat.  Or walk the dog.  Or sit down (other than in a car, which doesn't feel like sitting down).  Or to do laundry, send emails, blog, go to the gym.  Or to pick up kids and drop them off.  Or to drive there! Blah!

Harlie has been coughing up some small blood clots in the morning (with her initial coughs after waking).  Then no more blood for the rest of the day.  This has been happening every morning for over a week now.  The first few days, I was like, "whatever."  But, it's been more than a week now.  And they are blood clots, not just blood.  Then she started to cough up a little of blood in the middle of the day.  Weird.  Especially considering she is not sick (thank God) and not coughing excessively.  Her sats are great and her nights have been restful with no coughing.  Combine this with the fact that she's not been tolerating her cap or PMV, and I was getting concerned that she might have a granuloma in her trachea.  So, I emailed her local ENT and she said to come in to see her the next day at 2!  Wowzer!  I've never gotten an appointment that fast.

Rooney had a vet appointment at 11am.  Then I had to go get Harlie and Terri and bring Terri back home to get her car.  Then I had to go pick up Murphy from school.  Of course I forgot that he rode his bike to school.  But, by then I didn't have enough time to let Murphy ride it home to drop it off.  So, I had to put it in the back of the car.

Then we rushed to MCV for Harlie's appointment.  Parking was a nightmare.  More than usual this time.  We parked, took the parking garage elevator to the street.  Then walked the half a block to a different building.  Then took a second elevator to the second floor.  Then got off that elevator and switched to a third elevator and took that one to the seventh floor.  Normally, I don't notice the ridiculousness of the process.  But, because I had all three kids and they kept looking at me with faces full of confusion, I noticed.  Plus, I'm tired.  And it's easier to get annoyed when you're tired. And of course my thoughts went to how awesome it would be if we had a real Children's Hospital.  Or even better, all healthy children.  Oh, to dream...

We all crammed into a very tiny exam room and saw her doc, Dr. Dodson, who I love.  First she looked into her ear and cleaned the wax out.  I know that sounds gross, but she can't help it.  Wearing an aid all day prevents any wax from working it's way out.  Harlie sat super still and Dr. Dodson was able to clean it all out.  I was so proud of her!  Then she scoped Harlie right there and Harlie did GREAT!  First she put the scope in her trach and did not see any granulomas or irritation in her trachea.  Then we removed her trach, and she put the scope in her stoma (just in case the source of the blood was around the cannula.  Nope.  Her trachea is "beautiful."  Which is fabulous, of course.  Except that leaves us with no answers.  :-(

If the blood isn't coming from her trachea, I guess that leaves her lungs?  Which means I have to contact pulmonary, which I don't want to do.  Quite frankly, I don't think I'm going to get any answers there, either.  She doesn't seem to be bothered.  So, I'm just going to wait it out a little longer. See?  I'm tired.  And probably seasoned.  I know doctors don't know everything.  I think I liked the innocence of thinking they did, better.

We got home that afternoon and then I had to take Murphy to swim practice.  Now that he's nine, he moved up into the next bracket.  So now he has to swim 50 meters.  Oi.  I don't have high hopes for this season.  And if he doesn't kick up some motivation and desire to put some actual effort in, it will be our last with him.  I just can't do it.  I don't mind working really hard if he loves it and wants to do it.  But, if he doesn't, I just don't have it in me.  I'd rather put that effort into other things.

So that day was all go (the morning was spent on planting flowers) and I got no time on the computer.  You know, to do the stuff that really needs to be done.  I don't know why I bought those darn flowers.  Now I just created more work for me that needs to be done in a timely manner.  

Then Thursday was crazy, too.  The boys had a dentist appointment at 10am.  And I have no nurse until Monday.  Both of our nurses are out of town.  So, I had to keep Harlie out of school.  Which totally sucks.  But, I have rescheduled that dentist appointment for months because of stuff like this - and I just couldn't put it off any longer.  So, off the three of us went.

We had to wait for an hour.  An HOUR!!!  Something must be going on with this office, because I have never had to wait that long.  Anyway, Cooper was already super whiny and thirsty and hungry by the time we got in there.  Awesome.

But, surprisingly, he was good - while in the chair.  Out of the chair was another matter entirely.  So, Cooper and Murphy got their teeth cleaned.  Cooper has a very small cavity.  Crap.  So, they want to fill it while it's still small.  Murphy's good.  And I didn't make Harlie an appointment because I was thinking that she's seeing the dentist in Boston.  Which is stupid of me because they aren't cleaning her teeth!!!  Ugh.  Having two dentists in two different states is not fun.  So, after the boys were done Harlie signed "my turn" and she broke my heart.  I wished they would just work her in real quick, but apparently it was close to lunch.  I don't know what the reason was.  There weren't any patients when we left (near noon) and there were several dentists and hygienists.  Hmmm.  Anyway, that sucked.  And it's totally my fault.  I just wish they could have bailed me out.

So, we got on the road at noon and then I realize that Murphy missed lunch at school.  Now I have to go by and get something for him to eat before taking him back to school.  Fine, whatever.  It's just that I had no time since I had to have Harlie BACK to the same place in an hour.  Ugh.

For the record, I don't plan on scheduling things like this.  It just happens.  Especially when Harlie's sick, so I have to reschedule something (which was the case for both of these appointments).  And with the Feeding Clinic appointment, she must be seen every so many days to stay in the program. And we had already pushed that envelope to the max (it had been like 263 days since our last appointment and we are supposed to be seen every four to six months).  But with this past horrible winter for Harlie, I had to reschedule, and it takes three months to get another appointment.

So, there you go.  It's just the way it is.  Which is why these past few days have been so difficult.  It's been all go and for nothing I want to do.  Sometimes, that just gets old.  OLD, I tell you!

Anyway, so I dropped Murphy off at school.  Ran home and fed and walked the dog (man, I love that dog!) grabbed a granola bar for me, fed Harlie and left Cooper with my Mom, got back in the car and headed back to the Children's Hospital.

To clarify, the "Children's Hospital" is not a hospital.  It is a long term care facility for kids who have medical needs that prevent them from living at home (or who don't have a home) and an out patient center for therapies (PT, ST, OT and feeding) and there is a dentist office.

So, we drive right back there and I park the car.  Harlie says, "Mama!" and I turned around and she smiles a big smile and points to her teeth.  She thought it was finally her turn to get her teeth cleaned.  Ugh.  Break. My. Heart.  Seriously?  What freaking kid wants to go to the dentist?  Especially with her oral issues!!  I hate myself for not including her in the appointments.  But, how was I to know she would want to have her teeth cleaned so bad??  Heck, come to think of it, in my defense, Harlie wasn't even supposed to be with me!

She now has an appointment for June 26.  Let's hope she's in the mood that day.  Oh, and to get Cooper's treatment for his small cavity (which the dentist said she wanted to do asap) yeah, August 3rd.  Whatever.

Moving on...  We go in for her Feeding Clinic appointment (15 minutes late, which, in my opinion, isn't bad all things considered).  And we waited some more.  We see the Feeding Clinic to see a nutritionist and make any changes to her feeding plan, discuss some GI issues, etc.  Finally, we go back and get her weighed in and measured.

She now weighs 42 pounds.  Woohoo!  Except that's not enough, really.  Darn it.  While she gained some weight, she dropped on the growth chart.  She is the size of an average five year old.  Which I figured since her and Cooper are the same size.  She finally just outgrew size 4t clothes.

Right now, Harlie gets tube fed four cans of Pediasure 1.5 (350 calories per can) per day.  We now have to add in an additional four ounces per day.  I know that doesn't sound like much.  But, I don't know how were going to do that.  It's difficult to get the four cans in some days.  And it's going to be really important for her to get those calories after she has surgery.  Her body is going to need all those calories to heal.

So, we left that appointment and hurried home to try to make it by 3pm so Harlie could get in her hearing impaired instruction with Cheryl Sale.  She comes to the house once a week to work with Harlie.  We got home at 3:10.  Whew!  Cheryl waited for us and Harlie seemed to have a good session with her.

After that it was time to take Murphy to swim practice.  Oh, brother!  I was really tired by then.  I still had not put away the clean dishes, or worked on the laundry that was half done.  Or sent the emails I need to send, or worked on the Medicaid letters I need to get done, or written any thank you notes, etc.  Wait, that's not totally true.  I did work on the Medicaid letter while Harlie was working with Cheryl.

So, I asked Harlie if she wanted to go to the pool.  You should have seen her face light up.  I asked her if she wanted to play on the iPad at the pool or get in the water.  She signed "swim" and her face was so freaking cute.  I wish I could have gotten it on video.  Then she gave me a kiss and a hug.  Which was so cute considering I asked for a hug and kiss while we were waiting at the feeding clinic and she said no.  I guess she decided she liked me again.

Well, who could refuse her cute little face - especially considering the whole dentist thing earlier.  And the fact that she spent practically the whole day at the Children's Hospital.  The only fun thing we did that day was take the dog for a walk in the morning.  We stopped by and picked up James (Cooper's friend) and I took them all for a long walk with Rooney.  The boys rode their scooters and I pushed Harlie in her chair.  We walked by the school and I couldn't believe our luck when I realized that the third graders were having an early recess in the bus loop!  So, we waved to Murphy.  I could tell immediately that he was embarrassed.  Whatever.  So, I waved even more enthusiastically and told the kids to do the same.  ;-)  Good times.

Anyway, so we all put swim suits on and headed to the pool.  Tom came up and met us up there after work.  We let the kids play for a while and left at 6:45 to go home.  The house was a wreck, everyone needed to eat, the dog needed to go for a walk, and it was bath night.  It was a busy, busy day.

This post is so long already, but I'm at school with Harlie today, so I am sitting in front the of the computer.  I guess I'll write for as long as I can.

So, back to my to-do list.  It's crazy long.  And some things are time sensitive.  Like these letters of medical necessity for VA Medicaid (since she's having surgery in Boston).  Or this meeting with the Prentke Romich rep to see about getting Harlie a new communication device.  They have stopped manufacturing Harlie's model because they are using the new tablet style technology.  And one of the new ones is super light and her ability to carry the device around herself could be life changing. But, we need to have that meeting before her surgery since she will probably be in pain which could affect her testing on the devices.  Blah, blah, blah.

So, I've tried all different "systems" of managing my to-do list.  But I have finally come to the conclusion that it's not a system problem.  It's a time problem.  There just isn't enough of it.  Period.  So, I think I need to be more efficient.  And one way to be more efficient is for me to have all of the stuff I manage (Harlie's medical and educational material is immense) in one place.  Crazy concept, right?  As of right now, I have notebooks in the kitchen, crammed in two separate cabinets, in the hall closet, and in the laundry room.  Seriously?  File one piece of paper?  Yeah, I don't think so.  So stuff just gets stacked and then I have to go through that stack to find what I need.  Because I know it's in there.

In summary, I need an office. Bad.  Really, really bad.

I came to this conclusion several months back.  Actually, longer ago than that.  But, my hands were tied because we still needed the playroom downstairs.  I am not ready to send Harlie to the third floor to play.  No way.  I will spend all my time trudging up and down the stairs tending to her.  But now, I am fine with her playing in her room.  She has a monitor in there and I can hear when she needs me.  So, I have spent a lot of time going through the playroom and purging toys, separating them into giveaways, consignment and keepers.  Then the keepers got put in the appropriate child's room.  The playroom is essentially empty.  I just need Tom to saw apart the last cubbies so I can re-use them and put them upstairs.  Then we need to replace the flooring, and buy some office stuff.  Like a desk, and cabinets and whatever.

So, on Wednesday night, (which was the day I went to the Vet, ENT and swim practice) we were supposed to drive to Northern VA to go to the Ikea store to check out the office furniture.  I want to do this as inexpensively as possible and I want the office to be pretty modern with not a lot of stuff to clutter it up.

Granted, I didn't have a lot of energy for the trip - but it was the ONLY night we could do it for several weeks and I need this room so, so bad!

Well, we ended up not being able to go.  And I was disappointed and frustrated.  And I was tired.  And annoyed that so many things I do are things I have to do and don't want to do.  And it doesn't help that the next couple of weeks have some really challenging days in them.

For over SIX AND A HALF YEARS now I have had to do countless things that have been unpleasant or downright painful.  And I have tried to be happy and smile through it all.  I guess I was just really, really tired that night.  So, Tom came home and I really had nothing to say.  So, you know it's bad when I'm quiet.  He kept on asking me stuff trying to get me to talk, but I just didn't feel like it.  Crazy, I know!

I just feel so... raw.  Like even the littlest of things - that I normally blaze right through - hurt.

So, you know it's bad when you're husband TRIES to get you to talk and then announces he's going to the store to buy wine, and comes promptly home and immediately opens the bottle, and then brings you a full glass.

It's been rough.  And I feel bad for him.  I wasn't mad at him, exactly.  Although, I need his help for this office project (I've done all I can do at this point) and you know the proverb, A cobbler's child goes barefoot?  Grrrrr.  So he got the brunt of my crappiness.

Life is hard.  And somehow we have to keep our chins up and smiles on our faces.  I think an office will help me do that.  If not that, Tom's going to have to buy a lot more wine.  ;-)

I'm about to wrap this long post up, I promise!  But first, a few pics...

Today, Harlie had speech therapy with Amy.  And she drew this...

I don't know about you, but that is the cutest darn snail I've ever seen!

And the other day Harlie was watching Wild Kratts on the computer.  She kept on asking us to look at the fish.  After a few, "Yes, Harlie, I see the fish" I realized she must be trying to tell us something.  So, I asked her to tell us with her talker.  And this is what she "said."

Ah ha!  So, she wants to go to an aquarium!  Awesome!  And with surgery in Boston in less than five weeks away, she'll get to when we get there.  Or maybe we'll have to take a trip to the Baltimore Aquarium before then.  Our kids have never been there.  I suppose we should try to cram as much fun as possible into June so maybe I can live with the guilt of what this summer holds while her jaw is being distracted.

Another huge sign of progress in her language development happened the other day.  We were standing in the kitchen and all of a sudden Harlie verbalized, "I gotta go potty."  I totally understood her.  And she wasn't saying that because she was prompted or asked or forced.  She just had a thought that she verbalized.  That's a first, for sure!

Okay, that's it!  We are home now and many other tasks are screaming my name (as well as my children!).

If you're still reading - thank you!!

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

Pacemaker

Harlie's pacemaker surgery is scheduled for Tuesday, March 13th.  At first we were going to have it done here at MCV.  But, I just felt this... feeling in the pit of my stomach.  It's not that I don't like MCV, because I do.  I truly believe it is the BEST hospital here in Richmond for kids.  Period.

But, she's had all of her heart surgeries in DC.  And they have a CICU (cardiac intensive care unit).  And when I thought about deviating from the "norm", I felt like I was holding my breath.  And if we go to DC, that's that, and it's normal and all of a sudden, I don't feel like I'm holding my breath anymore.  I just don't want to have to think about it.  I have enough I'm thinking about already.

Odds are, it will be a relatively simple surgery.  She already has the pacemaker leads installed in/on her heart, so it should be easy to hook up the battery device to the wires.  If they go to hook it up (don't you love my technical terms?) and it doesn't work, then they have to do a lower sternotomy and reattach the leads to her heart.  But, of course, they won't know till they get in there.

I don't know... you'd think by now (this will be her 21st surgery, I believe) we'd be all old hat and all.  But, honestly, some if it scares me more now than it did before.  If I'm being truthful - I'm terrified that the second we become complacent with her having surgery, especially if it is a "minor" one in comparison, something horrible will happen.

And as Tom and I sat down to look at our calendars, he doesn't think he can make it to DC for this surgery.  He's really busy at work right now (thank God for that!) and he doesn't think he can get away.  And I distinctly remember a time when Harlie was having a simple OUT PATIENT procedure and she almost died.  He wasn't there.  What if?  How would I have called him and told him that over the phone?  

I know I shouldn't do this - but I can't help but think of the average set of parents and think that both the mom and the dad would be at this kind of surgery for their kid.   But, Harlie's just had so many.  It's simply not possible for Tom to take that kind of time off from work.  And everything about that makes me sad.  I can't believe how much she's been through.  And we're not even close to being done.

Not even close.

When are we going to get to a place in her life that she can just live her life?  Between all her hospitalizations, surgeries, therapies, doctor's appointments, etc. how is she still cooperating at all?

Quite frankly, I'm tired.  I AM TIRED!  I helped sort like a GAZILLION Girl Scout cookies today in a cold warehouse with wet shoes.  It rained all day today and my tennis shoes got wet on the way in and that has to be one of the most annoying feelings in the world - to have cold, wet feet.  Ew.  Then I had to run to school to relieve Harlie's nurse who leaves at 12:30.  Then I went to my friend Lynda's house to switch cars (too long of a story).  Then I came home to find Murphy home (when he was supposed to be at school with his running club).  So, I rushed him back to school for that (but not before I changed my wet shoes and socks, which instantly made me happier).  Then I had to put the seats back in the van (had to make room for cookies).  Then I took the kids to go and pick up Murphy.  Then I came home and returned the call from DC Children's and scheduled Harlie's pacemaker surgery.  I haven't run or done any exercise since the 10 miles I ran on Sunday, and I'm supposed to run 12 this Sunday and I didn't even want to walk to Murphy's school today!

And if I'm so tired, what about HER?  She's only five.  I bet she's pretty tired, too.

I don't want to take her to Therapy Thursday tomorrow.  And she has another follow-up appointment with her ortho surgeon next week about her spinal fusion.  In Northern VA, of course.  And you know what?  I'm not taking her.  I'm rescheduling it.  Sorry, Doc, but her spinal issues are no longer at the top of our priority list.  Sorry, but we have to move on.  And how much school can this girl miss?  Geez.

Oh!  I want to tell you about yesterday!  Yesterday morning Cooper woke up bright and early at 5:30am like usual (I truly DO live in paradise!) and was in his normal good, energetic yet cuddly mood.  And then he threw up in our bed.  On Tom's side, of course.  hehe  Of course he wasn't there because he goes to the gym at 5am.  Lucky ass.

Then I have all the kids downstairs and sitting at the kitchen table.  Cooper asks for cereal.  Then proceeds to throw up all over the kitchen table and in his bowl of dry frosted mini wheats.  And you know what he said afterwards?  "Mommy, will you dry my cereal?"  "Mommy, I want dry cereal."  Sure, honey.  Would you mind if I cleaned up the barf on the kitchen table first?  And I'm not going to dry your cereal, I'm just going to get you a whole new bowl of cereal, okay?  And so much for my Adrenaline class that morning.

Rush, rush, rush everyone out the door.  Tom and Murphy walk to school, me, Terri, Harlie and Cooper get in the car.  I grab a bowl, just in case Cooper gets sick again.  I leave a perfectly fine school located approximately 2 minutes from my home to drive to a different school 10 minutes away.  I think I may be getting a wee bit bitter about that.  We got to school, dropped off Terri and Harlie and then I head back home.  Just as soon as I got on the interstate, Cooper threw up all over himself.  I tried to give him the bowl, but he just didn't get it.  He threw the bowl to the side and continued to throw up everywhere.  Then, through tears he said, "Mommy, I need a wipe."  I tried so hard not to laugh.  A WIPE?  Oh, honey, you need more than A wipe, you need a hose.

Got home and ran inside to get some gloves.  Got him out of his car seat and stripped him of his yucky clothes and threw them, along with his car seat cover, in the wash.  Despite him clearly feeling crappy, he continued to run and jump and play as if nothing was amiss.  Really?  I'm sorry, but if you're going to yak, you should have to stay in one place.  Simple rules, Buddy.

He threw up another two times after we got home.  But I caught it with the bowl.  Even though he kept on trying to push the bowl away.  I still caught it.  Success!

Then he asked for frosted mini wheats again.  He ate two bowls, drank some Propel and has been fine ever since.  Thankfully.  He is a funny little dude.  And some good news to report - he's starting to go pee pee on the potty!  Woohoo!!!

Okay, I feel better now.

Thanks for listening!
~Christy

Weekend in review

Tom took Murphy camping with the cub scouts on Friday.  That left just me, Harlie and Cooper for the rest of the weekend.  I had our night nurse on Friday night, which allowed me to go to an exercise class on Saturday morning.  And it was HARD!  Oh boy am I sore!

A few hours later Harlie signed that she was itchy.  So, I took those long q-tips that you see at doctor's offices and put it down her cast like I normally do.  But when I pulled it out it was wet.  Like yucky wet.  I got a new one and fished around a bit, and pulled out some pink-tinged pus.  Oh, great.  That is not a good sign!

So, I called the ortho surgeon on call at the hospital (in DC).  I have to share some of our conversation... I gave him the quickest, most concise history I could to bring him up to speed.  When it was his turn to speak, he said, "First, I have to ask you, you're very medically knowledgeable, are you a physician?"  HA! I said, "No, I just went to the school of hard knocks.  I've been really busy the past five years."  chuckle, chuckle.

Anyway, he said that the drainage could be from skin irritation (of the severe kind, if you ask me!) or from an infection in the surgical site.  If it was skin irritation, they could try to modify the cast again and give antibiotics.  If it was an infection, she'd have to go back into the OR for them to clean the site.  You don't want an infection in your spine!  And he said that they might need to cut a window in the back of her cast to see the site to tell the difference.

And if it was a skin irritation, it could wait till after the weekend.  If it was an infection, she could get very sick, very fast.  So, we couldn't wait to see the doc during the week.

He said that there was no way he could tell me how serious it was over the phone.  Which left a decision - go to our local ER and have their ortho surgeon on call take a look at her, or drive her up to DC's ER where he would see her.  

Considering Tom was out of town and going to DC would be quite the commitment and I would have no idea how long I would be gone, I chose to go to our local ER.  Some negatives with doing that:

No surgeon wants to mess with another surgeon's patient.  Especially post-op.  

No ortho doc wants to mess with another doc's cast.  

So, some doc came down and looked at her.  It's his opinion that it is a pressure sore, and not an infection in the surgical site.  And here's why:

She's lost weight.  You can really see it now - she's super skinny.  And he said that the swelling is down, she's lost weight and she's moving and wiggling around in the cast.  Plus, her cast is really breaking down in some areas.  It was his opinion that she needs a new cast.  Three more weeks is a long time when you've already got skin breakdown.  And she is definitely in pain.  

He called the doc in DC and they spoke and agreed to send us home with the plan that we would be seen by her surgeon on Wednesday (she's out of town till then, as luck would have it - ugh).  We thought about getting a white blood count, but he was pretty confident and didn't want to put her through the torture of a blood stick.   

He told me what to look for in the meantime:

A fever

Loss of appetite/food tolerance

Reduction in activity/lethargic behavior

Overall sickness/not being herself

Now that we're back home and it's Sunday, I'm feeling a little less panicky and worried.  But, I left feeling a little annoyed.  I know that what he says is true.  For most kids.  But in our case, we have experienced a major infection with none of those signs.  So, I'm not very comforted with his words of confidence in my "mom secret powers" to just know if there's something serious brewing.

Here's why:

This is the post when I spoke about finding her past infection.

This is the post that summarized how bad the infection really was.

Some things noteworthy (in my opinion):

She had a raging infection in her face - at the surgical site - post-op NINE weeks!
She did not have a fever.
She was eating like she always does - fighting every bite and throwing up as usual.
She was not acting lethargic.
The only time she was bothered was when you actually messed with her face or mouth.
In four days' time the infection almost killed her.

The doc yesterday gave me some material to try to make the cast more comfortable.  I told him that we have not been able to get the tape to stick to the cast.  She keeps sliding down in the chair and the tape inevitably rolls up.  So, he gave me some magic tape that wouldn't do that.  Yeah, right.  I'll believe it when I see it.

So, last night I washed her hair and washed her up the best I could.  And then I turned her over my lap so I could work on her cast.  It is a mess back there!  She cried the whole time, protesting my efforts.  I did the best I could.  But I don't see it making much of a difference.  After I was done she kept signing "hurt" which is a first.  She's never offered up that sign.  She kept wiggling around trying to find a comfortable spot, crying and signing "hurt."  Ugh.  It killed me!  So, I gave her a dose of Tylenol with codeine and within the hour she seemed better and finally fell asleep close to 10pm.

I will call the office in DC tomorrow and see what I can get done.  I'm going to argue for them to - at the very least - cut a window in the back of the cast.  That would put all questions to rest and would take the pressure off the sore.

By the time her surgeon can look at the cast and get her in the OR to get a new cast put on, we'll be at least two weeks from getting it off anyway.  So, I think she's going to have to make the call if that two weeks is worth it or not.  Maybe we could just put her in the brace.  I don't know.  I just know that she can't go three more weeks the way things are.  Something's gotta change.

So, I guess I'll know more tomorrow when I can get a hold of someone.

**********

It is now Monday morning, and I left messages with everyone I could.  I'm not hopeful that I'll hear back today.  One complaint I have is that all the voice mails I get start off with "if this is an emergency, please call 911.  Or leave a message and your phone call will be returned in one to two business days".  What?  Certainly there are situations where calling 911 is not the answer - but waiting one to two business days isn't either.  Ridiculous.  I am really beginning to hate the orthopedic specialty.

I guess my other option is to just drive up there and go to the ER and then they would have to see us.  I don't know.

Anyway, just in case you were wondering - that magic tape?  Not magic.  Of course it didn't stick.  I find it hard to believe that they've ever used that tape and thought it worked.  I guess if you put it on your arm or leg where you're not laying on it all day, it would probably do better.

And - another note - she's really not tolerating her feeds very well.  She's throwing up during the feedings, which is very unusual for her now.  I hope that's just a coincidence.

Oh, and by the way - for all my local Richmonders - the pediatric ER at MCV is awesome!  It's brand new and completely renovated from the way it was.  You don't even have to walk outside - so if the area scares you in any way (which it's not scary at all) you don't have to worry about that.  You leave the parking lot elevator and walk right into the ER.  And each exam room is a ROOM - no curtained areas.  And it's big.  Lots of rooms.  Which translates into less waiting room waiting.  On Saturday there was no one in the waiting room and I got walked right back into a room and had docs in there in minutes - and it wasn't even a real emergency.

And need I mention that it's a pediatric ER?  The only one in the area, by the way?  Your kid is seen by pediatric doctors - who only deal in pediatrics.  Whereas if you go to another local hospital, your kid would wait with every adult, too, and be seen by the same doc that sees adults.

Oh, how different it would be for my family (and everyone who lives in this area) if we had a full-service children's hospital like every other city our size.  Yes, we are now the only city of our size that does NOT have a children's hospital.  So sad.  And embarrassing.  Think of the jobs!  Think of the houses that all those employees would have to buy and the shopping that they would have to do if they lived here!

I'll stop now.  It just makes me mad.

Okay, hopefully today will be productive.

Thanks!
Christy

Say it isn't so!

So, lazy Sunday, both Tom and I are feeling awful (colds, sore throats, etc.) when the phone rings. It's the doctor from MCV. He tells us that the blood culture they took during our Friday ER visit came back positive for Staph aureus (type of infection in the blood). I'm betting the culture was contaminated.

Although she's still tired a lot, and still requires O2, she has NOT had a fever. But, he said that we had to bring her back. And this time she would definitely be admitted (no talking my way out of this one) until another culture came back negative. And they have to give her Vancomycin (IV antibiotics) to be on the safe side. UGH!

Sometimes I feel like I'm going in circles!!!! Vancomycin is what probably led to her C-Diff. Which is probably what led to us being here - again - for the 3rd time in 5 days! I really am getting to know too many people here. It's scary. Nurses that had not had Harlie before already knew her history.

So, now we are back up in the Progressive Care Unit. But this time, we have a private room - the isolation room. So, that makes it better. I spoke to one of her cardiologists and told him I would REALLY like to be outta here by Tuesday morning. She has her appointment with Dr. Magee at 11am in Norfolk and I really don't want her to miss it. Especially since she's seeing ENT and I have a ton of questions for him. I know that wanting to see her craniofacial plastic surgeon might sound superficial, but it isn't. He is the one that will do the repair that will get her trach out. And after Tuesday's craziness - we REALLY want that trach out!!!

Oh, and on Thursday night she pulled her trach out for Tom when I was out. He got it back in, though, without too much trouble thank God.

So, hopefully, her blood culture from today will be negative and we will be able to leave here and still make it to her appointment in Norfolk on Tuesday. And she gets her helmet on Wednesday. So, we have a busy week and cannot be hanging out here at MCV! So, please keep your fingers crossed that everything is okay with her and that there isn't a more serious underlying issue they haven't found yet. Hopefully, this is just another speed bump and we will be back to making progress soon.

Thanks for your continued support. We really appreciate it.

Take care,
Christy