Hospital Update

Wow, has it been a long time since I've sat down to write a hospital update!

To give you a little background, shortly before Thanksgiving, Harlie started having issues tolerating her tube feedings (tons of coughing and complaining her stomach hurt). For example, the Tuesday before Thanksgiving, we fed her right before we got on the road to go to Pittsburgh.  She coughed and wretched the entire 6+ hours there.  It was awful.  Ever since then, things have gotten more complicated.

The Monday after Thanksgiving she woke up quite sick, definitely trending downwards. So her pediatrician sent us to the emergency department at VCU. There she had a chest xray and an upper GI. She was such a trooper. This girl who takes so little by mouth, cooperated by swallowing barium for the study. Since she was wretching so much, they wanted to make sure her nissen was still intact and that she wasn't refluxing.

All appeared okay. As usual, no answers. Such is life in medicine. So often, issues just resolve themselves with no explanation. Sometimes, that's the best case, and you just move on.  Hopefully that will be the case here.  They tested her, and she had parainfluenza, which just means it's a virus that's like the flu. We took her home and she seemed to recover in a few days. And she returned to school.

After that, she had some other issues come up. She had previously scheduled appointments with the dentist at 8am and a  pacemaker appointment at 1pm in DC on Dec. 6 (Tuesday). And she had a follow up appointment with GI scheduled for the 7th (Wednesday).

On the morning of December 6, she woke up with the left side of her face swollen. Luckily her first appointment was with the dentist. I had made it the day before because she was complaining about a loose tooth. I just wanted them to make sure all was ok. We saw a partner that we have never seen before. He did not introduce himself. He was kinda rough and very quick in his exam. I asked him about her face and he had to take another look (he had already gotten up to leave). He quickly determined that she had an abscess due to impaction. She has several adult teeth trying to come in, but she has not lost her baby ones yet.  

I left there, and called VCU dentistry because there's no way in hell I'm letting her get any anesthesia in a dental office. The only appointment they have available is for the next day at 8:30, which conflicts with her GI appointment. Given her history with infections, I had to bump GI for dentistry. So I call and reschedule GI for the following day.

The dentist at VCU looked and said there was NOT an abscess and nothing in her mouth could be causing the facial swelling. She told me to see her ENT.  So we went home, and I took Harlie to school.  I called ENT and they said we could come that afternoon. So, after school, we went back downtown to see her. She scoped Harlie's nose and determined that her sinuses are so clogged that fluid is backing into her skin. Crazy! That had to have been so uncomfortable, yet she never complained.  She put her on an antibiotic for the next 14 days.  

The next day, we went to her GI appointment.  We discussed her intolerance of her feedings.  By this time we had gone several weeks with not being able to get all of her feedings.  She lost two pounds.  Which isn't that bad, really.  The NP pulled up her xrays from her emergency department visit and said that she was backed up and needed a clean out.  So, poor kiddo had to do that over the weekend. 

She took it like a champ, though, and was back at school on Monday.  Sadly, it was probably unnecessary, as the antibiotics probably could have the done the trick... 

On the last day of her antibiotics (Tuesday) she woke up seemingly fine.  And just hours later was feeling crappy and was back on oxygen.  By that afternoon she spiked a fever - a rare occurrence. Tuesday night was awful. We put her back on her pulse ox and it alarmed all night. If she pulled the oxygen mask away from her face (which she did the whole night) her sats would drop and would drop low - in the 60s!  

Wednesday was more of the same. She seemed okay sitting in the chair watching tv.  But, she continued to be febrile. Wednesday night she struggled, too.  At 1am I had to go and fix her oxygen mask.  I could tell she was on fire. And she was working very hard to breathe.  I gave her some meds and stayed up for a while to make sure she was okay. I also sent a text to my friend Jennifer who sees sick patients and kids all the time.  I just wanted to get her opinion to see if she thought I should take her to the hospital.  I never want to rush to the hospital - unless I feel that Harlie needs more than I can give her at home.  So, it's not something I take lightly.  Jennifer came by on Thursday morning and said she needed a chest xray, and possibly different meds.  It also occurred to me that she has not needed breathing assistance since she got her trach out.  The trach was great for her because if she needed help, in a matter of mintues, they could just hook her up via the trach tube.  She doesn't have that now.  So, if she needed help, it would take longer to figure that out.  Her mouth doesn't open enough for her to be intubated.  So, I probably shouldn't wait too long to seek help for her.  

So, I took her in.  My flaw was not packing an overnight bag.  If I pack a bag, I don't need it.  If I don't pack a bag, I need it.  And I completely forgot (was in denial?) or thought she was totally going to come home, so I did not pack a bag.  Crap.  Funny how accurate that has proved to be through the years.  Sad that this is a true thing in my life.  

So, she turned out to be really sick.  The doc that took her under his service said that she has been essentially unwell for a month now and that he was going to take this seriously.  In answering the bazillion questions that you get asked in the emergency department, her poop came up.  Sorry, TMI, but I told them that I did notice that it had turned black in the last day or two.  Interesting (sign of blood)...

So, they tested her for all kinds of stuff.  And they admitted her.  On Facebook, I had just shared a post about special needs parenting and the trauma and PTSD that goes along with it.  I have been "joking" for years that I am brain damaged from the trauma, and this was my proof.  I know I'm not as smart as I used to be about certain things.  Luckily, I know my shit when it comes to Harlie.  So, that's good.  But give me a list of stores I need to go to and I can't figure out how to get to them all in an organized manner.  I know I can't think through stuff like that and it causes me a great amount of stress.  Again, I joke, but I'm really serious.    

Anyway, during the whole admit process I felt on the verge of tears.  Having to tell Tom that she was being admitted, on the 22nd of December, was no fun at all.  I wasn't that upset about Harlie's status.  Yes, she was very sick.  Sicker than I've seen her in many years. But, I didn't feel as if her life were in danger.  And, that my friends, is a wonderful change from the way it was for far too long.  Yet, I wanted to cry.  As a parent of a medically fragile child, there are way too many times you have to do crap you don't want to do.  And this admit was one of them.  She wasn't sick enough for the intensive care unit (way to go Harlie!) but she was too sick for the floor.  So, she was admitted to the pediatric progressive care unit (PPCU).  For those of you who have been reading my blog for years, you might remember that I've talked about this unit before.  It is one big room with many beds, separated by curtains.  It's not great.  And it's Christmas.  I wanted to cry.  But, I had to hold it together.  Harlie is right there and she's watching me.  I need to let her know that everything's okay.  Plus, there are sicker kids, and sadder situations than her being in the hospital for Christmas.  I must keep it in perspective.  

The tests indicated that she has RSV and that she's got some bleeding in her stomach.  So, they put her on meds for the bleeding and within a day, that appears to be a bit better.  RSV is a virus, so all you can do is support the patient and treat the symptoms.  

In the emergency department, they didn't want me to feed her.  So, she went all day with no feedings. And she appeared to be better, although nothing was done to make that happen.  Once she got settled in the PPCU, sometime that evening, I was able to feed her.  A few minutes after, she completely fell apart.  Coughing a ton, sats dropped and she had an increase in her work of breathing.  It was crazy.  It took an hour for her to settle down and recover.  So, clearly, there's some correlation there.  

Unfortunately, that all happened around the time Tom and the boys came to visit us.  I could tell Cooper was not liking her being here at all.  Tom said that when they got home Cooper asked Murphy if he could sleep with him.  Murphy would normally say no.  But, he is such a good brother, and could tell Cooper needed some comfort.  So he said yes.  I give Murphy a hard time a lot, but he really is a good brother when it counts the most.  

Thursday night was okay.  My friends Bethany and Geoff were out on a date night and were near the hospital.  So, they brought me a dinner from Comfort (a restaurant not far away).  It was very late, but I was hungry.  They were so good to bring it to me.  They even sat with me and we got to chat for a while.  I got a few hours of sleep.  But, I am sitting two feet from a sick baby and he had a hard time a couple of times during the night.  

The GI doc came to see her this morning and he said that she can not get a regular feeding.  It would be better for her stomach to get small amounts at a time.  And if the bleeding doesn't stop, we'll have to not feed her and give her Pedialyte for a day or so to let her stomach heal.  So, we had to put her on continuous feedings.  This definitely feels like a step backwards.  She hasn't been on a feed pump in years.  And it's so hard to go backwards.  We do not want a new normal.  We want our old normal.  But, I also can't ignore that she simply cannot tolerate a feeding right now.  I don't want to do that to her.  So, she's on continuous feedings until she fully recovers.  

Her pulmonary doctor came to see her and he said he wants her to have a good day before he will let me take her home.  She is still coughing a lot, but overall I can definitely see a difference and that she's feeling a bit better.  Her last fever was 103 on Friday morning and she's been good ever since. So, that's a good sign.  

Her blood pressures have been low all day.  But, they are keeping an eye on it.

Hopefully, we'll be able to take her home tomorrow.  We usually go see Santa on Christmas Eve.  Not sure if that's going to work out or not...

Child Life came to see me today.  She said that she wanted to find out if she's going to be here for Christmas.  Carolers are coming tomorrow (Christmas Eve) and on Christmas they deliver a bag of toys to each child.  Hopefully she won't be here.  But, she made her a bag anyway.  She asked me what she liked/didn't like and she put together some stuff.  So sweet, it kills me. 

It has been really funny to watch Harlie's interactions with everyone.  She asks, "What are you doing?" to everyone who walks in her "room".  She's very suspicious and she wants to know what they are doing before they do it.  If they stand in between her and the TV, she tells them to move, no matter who they are.  And she will randomly ask her nurses what their favorite color is or what their favorite animal is.  It's really cute.  But, she will also yell "NO!" at them when she knows they are headed for her IV.  They have to argue and fight to gain access.  When they hook up her IV meds she asks "how many minutes" (it's going to be hooked up).  And then tries to negotiate for less minutes (which they can't do).  She also told her nurse that she doesn't like stickers.  Her nurse said, "Why don't you like stickers?"  Harlie said, "They are too sticky."  Even when she's sick, she is funny. 

Tom brought the boys down for dinner.  And my brother Bruce and his wife Nancy came to visit, too. 

That's it.  Hopefully we'll be able to go home tomorrow.  Pics from our stay so far...

Then Cooper got a hold of my phone and took some pictures:

Look how happy she is to see Cooper!

Thanks Cooper.  Every woman wants to be photographed
while taking a big bite of a chocolate macaroon.

Just silly.

Not necessarily loving what I'm hearing from Murphy, huh?

Thanks for all the love!  

~Christy xoxo

Summer Reflection

This summer has been interesting.  Without a doubt, it has been the most "relaxed" of the last 10 summers we've lived.

You know that "On this day" thing on Facebook where you get to see what you posted on that day from years past?  Well, this summer has been a constant flashback of surgery after surgery.  I feel like each day I've relived it a little.  One day it was a post about coming home from Boston.  The very next day was us heading to Boston again!  Geez, no rest? A post about sending the boys to their grandmas, and how I missed them already.  Posts providing updates throughout surgery, she's in the OR, she's on bypass, she's off bypass, she's out, she's sicker, she's better, etc., etc.  How did we live like that?  No, seriously, how in the world did we do it?  This made me think about it.  So, here is a summary of the last 10 summers of our lives (all her other surgeries at other times of the years are NOT included):

2006:  I was pregnant with her.  In June, we learned that she had major heart defects, along with her major lung defects.  We were asked more times than I can remember if we wanted to terminate the pregnancy. The rest of the summer I had weekly appointments with several doctors to make sure she was still alive and that I wasn't in danger.  We were advised to make all decisions just in case she didn't make it.  And we were told to leave Richmond if we wanted to give her the best chance of survival.

2007:  My adorable, tiny, little baby girl, who already had six surgeries (two of them open heart) was working way too hard to breathe.  After two months in the hospital (March - May), followed by many trips to the ER, she limped into August, when she had most of her right lung removed.  That was a life-saving surgery.  Her life was immediately, immensely better -  thank God and her wonderful doctors.

Due to a post-surgical complication, that summer also included a 911 call from my house (something you never want to do) and a helicopter transfer from our local hospital to Children's National in DC.  That was so crazy that I didn't get any pictures of that experience.

2008:  She had her first jaw reconstruction and craniotomy in Norfolk, VA.  I was also pregnant with Cooper at the time.  I'm pretty sure every nurse and doctor thought we were crazy for having another baby.  But, hope is a funny thing.  She spent the summer with her jaw wired shut.  Turns out the surgery wasn't successful.  She fell in the bathtub and hit her chin on the edge of the tub.  I think that negatively affected the reconstruction, but I don't think it changed the final end result.

One of my all time favorite anesthesiologists.
He was so great that he came to check on her throughout her stay. 

She always finds her smile again.

2009:  She had her third open heart surgery.  This one was particularly rough emotionally.  Her surgeon's original plan was to do two procedures (the DKS and the Fontan) at the same time.  But, after having a conference with many other surgeons, he changed his mind and decided to do just the DKS.  This was disappointing because we wanted to avoid her having to have a fourth open heart surgery.  He came out of the surgery and said that her heart has "the world's worst scarring" and he wouldn't have had the option to do the second procedure anyway because getting through that scar tissue was so time consuming.  And you can only be on the heart bypass machine for so long.

It's always so hard to hand her over.  

Our friend Donna came to visit.
Smiling again!

2010:  She had her fourth open heart surgery, the Fontan.  Nothing really stands out, other than that she is a champ.  Oh, and I spent the summer training for the Richmond marathon.

Waiting to go back.  Worry distraction play time.

It only took 20 minutes and a whole lot of work
to get her up in my lap.  

2011:  She had spinal fusion surgery at the end of March and was in a body cast for weeks and weeks.  Her bone graft in her spine became infected and she had to have additional surgeries complete with a wound vac in May.  That summer she spent recovering.  Looking back, it was probably the most difficult recovery of all her surgeries.

2012:  She had two surgeries that summer.  She had her first BAHA surgery.  And then we headed up to Boston for her fibula free flap mandibular reconstruction (which was her third jaw reconstruction).  What made this one so different was that they took her fibula from her leg and implanted it into her jaw.  At the time her jaw was disconnected on her right side and was only held together by scar tissue around it.  They connected blood vessels to give the bone life and we waited to see if it "took."

The boys being supportive.

Not again!  Harlie hiding from the docs before being
taken back for jaw surgery.

Back home and smiling again!

2013:  In July, we returned to Boston for her jaw distraction surgery.  Once the bone took and healed properly, they were able to distract it.  They essentially broke her jaw, put pins and rods on both sides of the break and we turned the screws each day.  Each day, with the turns, her jaw would break again and new bone would grow, making her jaw "longer."  We turned those screws three painful times a day for twenty-some days.  At the end of August, her incision became infected which required four debridements and another week in the hospital.

The amazing docs in Boston -
Dr. Brain Labow and Dr. Bonnie Padwa.

It's a tough job being her dad sometimes,
but he always rises to the challenge.
They were teaching us how to turn the screws.

Recovery miraculously goes faster when you have your family
surrounding you.  This is when our friends surprised us
by flying Tom and the boys up to Boston to visit us. 

2014:  Her lungs were bad this summer.  She had a CT scan that revealed that she had inadequate alveoli.  She was on oxygen 24/7.  And it was mentioned that she will need a heart and lung transplant at some point in her future.  Although, you never know what the future holds.  Because she's doing so great now, that that's hard to believe.

Oxygen at the pool?  No problem!

 We went on vacation that year and she couldn't spend much time outside.  And she couldn't walk from the house to the dock.  That's okay.  We're problem solvers.

Wagon ride to the dock.

Fishing once the sun went down.

She caught the biggest fish!

2015:  She had a sleep study and we anxiously waited for the results for weeks and weeks and weeks!  And, finally, on August 11th after almost nine years with a trach, she was decannulated!  Woohoo!!!

So excited!

Dr. Preciado - the doctor who saved her life
at the very beginning.  He got her breathing tube in
right after she was born (which was a challenge).

All done!

Leaving the hospital without a trach!  Woohoo!

Visiting family in Pittsburgh!

2016:  I can state with confidence, that this has been the best, and her most healthy summer of our lives since 2006.  I definitely feel like the last ten years have been traumatic.  Thankfully, they've also been full of great stuff, too.

Just look at her! Can you believe all she's been through? There are not enough words to express my gratitude for all that's good now.  Harlie is a very happy girl - there is no doubting that.  And, if all goes well, she will start school on the first day of school, like most kids.  The only other time she was able to go to school on the first day was in the fall of 2011.  Isn't that crazy?!  So, keep your fingers crossed that nothing messes her up this year!  This is shaping up to be a great year and I'm excited for all she will get to experience.

So, thank you again, to everyone who has ever had a thought or prayer for her and us over the last 10 summers (and years, but I'm focusing on the summers here).  Almost every day of this summer I saw old posts on Facebook from loved ones sporting their We Heart Harlie tees, or writing it in the sand, chalk, paint, etc.  So many expressions of love and support!  I hope you know that I am honest and sincere when I say we couldn't have survived it without you.

Love you all!
Christy xo

Harlie Update

It has been so long since my last post.  Like FOUR months!  Ugh.  I have started so many posts, but I've never been able to finish them. Harlie has been doing so great that we feel like we have a whole new life.  It's been an adjustment (a great one) that has consumed our lives.  No more time for my computer.  No more time for writing.  And, for the most part, I've been okay with that.

Here's where we are:

Harlie had stoma closure (her ENT in DC surgically closed the hole left by her trach) in early October.  Then, after two years of being on home bound, she finally returned to school on November 9th, as a second grader.  She was so excited!

This is her second grade photo.

October 2015 (9 years old)

I just happened to come across this next photo tonight.

February 2012 (6 years old)

It was taken before we went to Boston for jaw reconstruction.  You can see how little jaw bone she had.  Kinda crazy.

Anyway, she loves going to school now.  What a change from two years ago!  Since her start, she's missed maybe 8 or so days of school for being sick, which isn't so bad, all things considered.  She's really doing great and I can't tell you how much I LOVE getting emails from her teacher that say she's had a great day and they are loving her progress!

At first, she went from 8am to 11am, Monday through Friday.  She only attended the hearing impaired class.  But, in February, we added another hour to her day.  So, she goes to her general ed class for writing and then she goes to lunch, then the bus brings her home at noon.

The school found a nurse for her three days a week.  So, on those days I take her to school, and turn her over to the nurse, who stays with her, rides on the bus with her, and then the bus returns the nurse back to school to get her car.  On the other days, I take Harlie and Brandy to school and drop them off.  And then Brandy rides the bus home with her.  She also still has a teacher that comes to our house some afternoons for more support.

Having the school provide a nurse for a few days has been very helpful to my schedule.  On those days, Brandy gets Harlie off the bus and stays with her for the afternoon, so I can work.  Yes, so I can work.  At a job.  Not at home.  I'm aiming for 10 hours a week.  But, I don't think I've been able to do that yet.  But, I'm getting closer, which is good.  It is so hard to believe that it's been nine years since I had to give up my career.

It's so funny how life works.  I had just made the most money I had ever made, we sold our house and bought a new one (well, new to us, I mean) with the intention to remain a working mom for a while and BAM!  I left work one day, and was never able to return.  That would have been helpful to know before we bought this house.  Yeah, haha, so funny.

Anyways, back to how great everything is...

Even though she isn't sporting her trach anymore, I was still nervous about throwing her in a general education classroom.  I might have forgotten to tell you that the school agreed with me and they put her back in second grade again.  I was really impressed with her IEP team and how they all wanted what's best for her - and that we were all on the same page about what the "best" was!

So, I voiced my nervousness to her teacher and vice principal (totally in love with that woman!) and they said we could talk to the class to prepare them.  So, in the end of January, I went to her school and her hearing impaired teacher, the VP, the school counselor and me went into her second grade classroom.  Her teacher read the book we made for her class two years ago called, "My Name is Harlie."  It went great.  Although I was a real nutcase and said something totally stupid like, "she's worked really hard to be in school and it's a blessing to be here" or something like that.  As if any kid in that class could be capable of being grateful for being IN school.  I'm rolling my eyes at my own idiocy right now just thinking about it.

Anyway, the kids were cute and the VP said something like, "So, boys and girls, do you think Harlie looks scary?"  And they were all, "NO!"

Yay!  One girl raised her hand and said she sat next to her in an assembly the other day.  Super cute!

The book that her teacher read was written right after we went to Boston the first time for her jaw reconstruction.  So, I gave an update and told the class that all was successful and that she got her trach taken out.  But, I told them that you can still see a scar from where it was, but that it doesn't hurt her (Kids are usually bothered by something if they think it hurts another child.)  It was interesting to me that a little boy asked how long she would have that scar.  I told him forever.  Along with the other 18, but I didn't tell him that.  :-)

Since she was going to go to lunch with the class, I thought I would try to send her with yogurt so she would have something to do while the other kids were eating.  I can't believe it, but she has eaten her yogurt every day at lunch!  The whole eating by mouth thing is a complicated issue mixed with my emotions about the whole thing that I really just didn't want to deal with.  Over the years I've been SO excited about her swallowing and eating and thought so many times that her eating that one meal was going to change the course of her future.

I was wrong. She had her good days.  But more bad ones, probably.  And ultimately, after many years and so much hard work I had to finally accept that maybe eating by mouth isn't all that it's cracked up to be.  She's happy without it.  I should be, too.  You can't have it all.  You win some, you lose some. Pick your battles.  You get my point.  

And while her eating yogurt at school is fantastic, I have to keep it in check.  I no longer have that emotional energy to spend like that (getting my hopes up SO high, just to come crashing down again).  And she can't chew.  We'll have to work on that with help, I'm guessing.  So, I'll give her smooth foods for now and see what happens.

Another HUGE thing that deserves it's own post is that she is taking SWIMMING LESSONS!  One of the reasons why I haven't blogged in so long is that I'm having trouble downloading my photos onto my computer.  So, for example, I want to post a photo and video clip of her going under (what a big deal!) but I don't have it on this computer.  So, I will have to fix this situation and get a post up about her swimming.  Only something we dreamed of for NINE years.  No biggie.  ;-)

Well, that's a start.  I must admit, I missed talking about her.  And she's been so funny, too.  Her communication skills just get better and better every day.  In fact, the other day she was able to tell me that a boy in her class wore a We Heart Harlie shirt to school.  I can't tell you how incredibly cool it was to ask her how school was and have her be able to tell me something about it.  So, to the mom of that little boy, thank you for buying a shirt!  I know it makes her feel so loved!

Hopefully I'll post again - sooner rather than later!

Thank you and much love!
~Christy xo