Tuesday, November 6, 2018

Politics, not really.

Being brutally honest here, I am struggling right now.  This is my reality, and might not sound pretty. Here's just a small sample of what I have on my mind...

Political ads.  They have invaded my home more than any previous election year.  I've seen them play four ads in a row, going back and forth between candidates, making it feel as if they are arguing in my living room.  I have three kids between 14 and 10 years old. I don't need any more arguing in my house, thank you.

I am maxed out.  Some days, just getting through the day is a major accomplishment.  My priorities are as follows (in no particular order):

All things Harlie.
  • Keeping Harlie well. This isn't as simple as it sounds.
  • Trying to remember all of the appointments I have to schedule and then get her to.  She has four extra appointments this week alone (and it is only Monday). Her schedule is bonkers.  Every day is packed with appointments/school/therapies, etc. with NO fun stuff.  If I wanted to make her schedule less hectic (which I would love to do) she would have to go without something vital, which clearly isn't an option.  It feels cruel to make her do so much, but then it feels cruel to not give her speech therapy, physical therapy or her education. All the while I get to hear other families "complain" about how busy their kids are with fun stuff.  Fun stuff they willingly sign them up for, pay good money for and enjoy watching them do whatever it is they do. I would SO love to watch Harlie be able to enjoy something - like she did with her swimming lessons. I miss that wonderful feeling so much. 
  • Learning and then making the best decisions I can when it comes to her education.  We just had her second IEP of the school year and I had to decide if they should initiate a full testing thing on her (lots and lots of testing). My answer was yes. Now we'll see how it goes... Got home from work the other day to learn that her vision screening at school was abnormal on her left side. It is the same eye that had a hard time recovering after being on the paralytic in the hospital for like 25 days. Awesome.  So, I made the appointment for her to go to the same place she went years ago and they said her insurance doesn't pay for routine eye exams. How is this routine if it is based on a problem?!  Whatever, will do what I have to and go from there.
  • Ordering supplies (on time so we don't run out of anything).  Our local DME company recently sold to a larger company that is in several states.  Yes, this has affected us directly.  I think this will be fine once all of the kinks are worked out.  But, change is HARD in the special needs world (can't stress this enough) and the different product brands and the way things work vs. the way things used to work has been really, really difficult and very stressful. For example, the pulse ox probes we have to use on Harlie every night only lasts a few nights (the sticky stuff wears out and the readers get yucky). But, they only send us like six for the whole month.  They used to send a brand that came with little stickers to use so you can use them over and over again.  The new brand doesn't have those stickers.  So, making them last is very difficult.  Again, we use them every night and if they come undone in the middle of the night, then it sets off her alarm and I have to get up and solve the stupid problem.  Oh, and by the way, the purpose of the pulse ox is to alert us if her heart stops beating, she needs more oxygen or if she can't breathe, so no biggie. Will work on fixing this problem, of course.
  • Insurance issues. This was "okay" for many years.  However, Medicaid made some major changes a year or two ago and it is BRUTAL now.  They farmed us out to various insurance companies and Harlie's docs in DC are out of network.  And I don't have the option to stay in network, because her ENT is there and considering her number one problem has been airway based, that's where she needs to be. They deny seemingly everything anyway, even in network.  This pic is from ONE, 7-page EOB I just received, which has the dates of service as Feb. 21 (the date of her LTR surgery in DC) to Feb. 26.  To put it in perspective, she was discharged on April 14th. 

  • If I could explain how this ONE EOB makes me feel, I would.  Keep in mind that I've probably received thousands of EOBs. She's had over 60 surgeries and has spent more nights than I can count in either a NICU, PICU or CICU.  She's been transported in several ambulances and a helicopter.  
  • Managing home health nursing and balancing those relationships with family and privacy.  Well, honestly, our nurses know way more than they probably want to - so I don't think it is possible to balance that, really.  Privacy went out the window 12 years ago.  Thank God I found some awesome nurses.  
  • Equipment issues.  We have been struggling with her wheelchair lately. it just seems like it doesn't really work for us. We have to carry a suction machine, supplies and an emergency go bag with extra trachs and stuff - all the time. There is no place to put such bag. And I have my own bag and this chair requires both hands to be on it. The other day I got coffee and had to push her and hold my cup at the same time. The struggle is real, people. And then I feel like we need two different kinds of chairs - one for smooth surfaces and one for grass and gravel.  For example, if we don't have a nurse to work during Murphy's cross country races, one of us can't go.  Taking her isn't really an option since you are on grass and gravel a lot. It is a terrible feeling to know you can't take your child somewhere because access just isn't possible. 
  • Her spinal issues - Kyphosis Scoliosis. It weighs heavy on my mind. I don't want her to have to have another spinal surgery! They are horrible and I don't want her to have any more horrible experiences. And I don't want her to have it before she's done growing. She's already so tiny as it is. But, it doesn't matter what I want.  I am going to try something crazy (because that's what you do when you love your kid and want to give her the best chance at avoiding something horrible) and take her to the National Scoliosis Center in Fairfax (which doesn't accept Medicaid at all) and see if there's anything they can do to buy us some time. That appointment is in a few weeks.
  • I could go on, but I'm sure you get the point. 
Our Boys.

Life has been a bit more challenging with the boys lately. I believe they are smart kiddos, but they don't seem to care to show it a lot of the time. They are not exactly highly motivated in their academics. I think this is especially difficult as parents when we appear to live in a bubble full of over achievers.  I mean, if you have a kid or kids with straight A's, who excel at every sport and extra curricular activity, congratulations!  

The other night, as we struggled with math with our 10-year old, I thought, why can't there be a balance here?  If we get Harlie, we should have freaking geniuses as our other kids.  Okay, fine, maybe that's over the top. At least give us self motivators!  Geez. 

And if I'm being REALLY honest, it isn't just math with Cooper. It is every.freaking.thing that he doesn't want to do that is a challenge.  So every time I turn around, I am in some sort of stupid battle.  I mean, showering?  When in the hell is this going to be a given??!?!  Eating?!?!?

And back to "fun stuff" for a minute, Harlie's crazy schedule affects the boys, too.  It means I am WAY less available to get them to their fun stuff.  So, they have been limited to one activity, each. It was swimming, but that became too difficult. So, now it is cross country through the Y for Cooper (fall and spring only) and running for Murphy, through his school. That's it.  They seem happy with that, so that's good. 

Mabel. 

Yes, Mabel is making this list of things that are pushing me closer to the edge. I love her, don't get me wrong.  But she seems to have developed a sensitive stomach, or an allergy to her food.  Now that I think about it, I don't know why this should surprise me. Tom and I love food - all kinds of food. Of course we have three children who don't like to eat. And now one dog that has feeding issues, which so far, has required prescription food. UGH!  And she's super itchy. So, I'm going to have to take her back to the vet. Again.

Politics.

So, back to politics, the thing that inspired this vent session. I don't have anything left to give to politics. I'm sorry.  Really, I am. My brain just can't learn what I feel like I would need to learn to make an informed decision on any kind of election.  My brain is full. I am an uneducated voter. So, why should I vote?  What kind of vote is it if you don't even know why you're voting for that person?  Seems wrong to me. So, I don't know what I'm going to do. I promise I will make sure to avoid Facebook on election day since everyone and their brother will be trying to tell me what to do.  Get out and vote!  

I don't care.  No, that's not true at all.  I can't care.  I just can't.  Which really sucks because what they do with health care (pre-existing conditions) and Medicaid is a big deal to us.  But, no one seems to know what the heck is going on with that. And just because you vote for one person who says they want what would be good for us, doesn't mean that good stuff will happen. 

And I have so little control over my life.  My daily existence is dictated by what Harlie needs, and what everyone else needs.  My needs are last (which is normal for moms, I suppose).  But, I am kind of tired of being told what to do all.the.time.  Especially by people who don't have any idea of what my life is like. 

So, go do what you want/can on election day.  Be happy you have the energy and ability to care. Just remember that not everyone is as lucky.  I'm going to focus on getting through the day as best I can and am going to try to forgive myself for forgetting about Cooper's parent teacher conference yesterday.  Such is life when you're pulled in too many directions all the time.

Thanks for the love,
Christy xo


Friday, October 12, 2018

My Tattoo

Hi! I know, it has been another two months since my last post.  I have so much I want to share with you (like about the We Heart Harlie & Friends Gala, which was amazing!).  But, I already had this written and ready to go, so I'll start here.  I wrote this weeks ago, just couldn't finish it up.  So, here it is...

I meant to go on Facebook that morning to tell my friends that I was about to do something crazy and that I needed whoever liked me to like it, too - even if they were lying.  But, Tuesday, September 4th (the first day of school) was a really busy day and time got away from me.  Plus, I was SUPER nervous, so all other thoughts kind of left my brain.

I got a tattoo.  I still don't believe it myself. Here it is after a few weeks of healing.




And while I know I don't have to explain myself, I want to.

The first thing I want you to know:

Years ago my friend Ann started the Willow Tree Foundation.  It's mission is to provide parents of medically fragile children with respite opportunities through activities that allow parents to take "time-out" from the unrelenting demands associated with their child's care so that they can maintain their stamina and sense of perspective and continue to meet the intense medical needs of their child. 

This is what their website says about the Willow Tree:


The willow tree is a relatively small tree without much of a trunk. Its branches are long and bending and give the appearance of being weak and fragile. Yet, when the storm rages it is the willow tree that stands strong. Under the earth the roots of the willow tree run long and wide; these roots hold the willow tree in place during the attacks from the violent winds. The deceptive branches are also a strength for the willow tree. Without a large trunk the willow tree branches are long and pliable.  During the raging storm, the branches move and stretch with the wind. Ever bending, never breaking.
Much like the willow tree, parents of medically fragile children weather the storm and persist despite the significant emotional, physical and financial challenges they face in caring for their children. Over time, these unrelenting burdens can drain a parent’s strength and stamina. The Willow Tree Foundation was established to provide moments of calm in the storm by providing respite opportunities for parents so they can continue to bend, not break, and stay strong like the willow tree.
I have held on to ever bending, never breaking for over 12 years now.  More times than I care to recall - for dear life.  The two year hiatus we had from her trach and intense medical problems was amazing.  But, as amazing as they were, the last year was equally devastating.  Putting it frankly, it kicked my ass.  You don't watch your child almost die (several times) and come out unscathed.  Just trust me on this one.  
The second thing I want you to know:
A few years ago Murphy met a friend at school. Murphy was in the 7th grade and he came home from school to tell me about a conversation he had with this friend.  It was fall picture day.  He said to his friend in awe, "Your mom lets you wear a t-shirt with a snake on it for picture day?" His friend said that he doesn't have a mom.  His sister is raising him.  Well, we all ended up becoming friends and often when Brandon's sister would have to travel for work, we would keep Brandon for her.  Sometimes it was for several days, sometimes several weeks.  It was easy since we live within walking/biking distance to the school.  She brought his bike over and the two of them would just ride back and forth. And Brandon is a good, helpful kid, so it really wasn't difficult.  We already have a crazy home, what's one more kid?  


Well, it just so happens that Brandon's sister is a tattoo artist, and a really, really good one at that (she won Season 2 of Best Ink in 2013).  A while ago she offered to draw and do a tattoo for me - for free!.  After the last year we had, I just can't explain it.  It wasn't like I wanted a tattoo - it was like I needed one.  I know that might be hard to understand, but it is just the way it was. And it is so weird that while I've been thinking about this tattoo for years, I wasn't going to go looking for an artist to do it.  So, meeting her and having her offer and make the path to getting this tattoo easy for me - AT THIS TIME - seemed meant to be.  Isn't that crazy? 
So, in August, Theresa and I sat down and talked about what I wanted in this tattoo.  She drew a few versions and gave me a date.  I was definitely scared - getting a tattoo is SO out of my comfort zone, and not my personality, at all.  But, such is life for me the past 12 years.  
Tom met me at her studio at noon.  


Theresa showed me the final version and it was bigger than the last version.  In order to have the color and detail I wanted, it couldn't be small.  But, our life with Harlie has been extraordinary, so a small tattoo just didn't seem right anyway.  It hurt like hell.  The outlines felt like a thin, sharp knife cutting my skin.  This part proved to be the more enjoyable portion of the experience.  


The coloring felt like my skin was being scraped off, over and over, in the same spot. 


The highest part on my neck and my spine were the worst parts. After she started I told her that I once cried for two days over a bad haircut.  Getting a tattoo was never something I thought I would do.  


The longer it took, the more it hurt.


Anyway, after about three hours, it was done.


She said the color will come out more and more as my tan fades. I gave her a hug and thanked her and left.  I was crying before I got to my car.  All I could think was, What the hell did I just do? WHO AM I?? The Christy I was before Harlie would never have gotten a tattoo - much less one this incredibly large! I really needed a moment to myself.  But, it was after 4pm by then and Harlie's nurse had to leave, the kids needed to tell me about their first day of school and I had a We Heart Harlie meeting at 6pm. 
The third thing I want you to know:
I have often wondered Every single day I have wondered what kind of mom I would have been if Harlie were born healthy. What kind of wife would I have been?  Daughter, sister, friend?  The fact is that I was someone else before she was born and I had to adapt/change and become someone else after.  I had to quit my job, lose my career, make tons of sacrifices (personally, emotionally, financially), learn to accept help and learn how to be a nurse/caregiver 24/7 to this child who is medically complex to even the most experienced doctors.  These doctors often ask ME what I want to do when it comes to her!  I joke that my brain has been damaged.  But, it really isn't a joke. My brain functions totally different than it used to.  It had to adapt, too. And I feel those effects every day.  
Then last year happened. We spent over three months in a cardiac intensive care unit - out of town, away from our family and friends.  I was so scared, so many times.  It felt like a horrible nightmare (still does sometimes). I tried to hide it best I could and put my brave face forward for my family and friends so they wouldn't worry as much as I did.  Last year changed me, again.  
So, who the hell am I now?  I'm reminded of an image my friend Ann shared with me years ago.  

So, that's how I feel.  And to be honest, I grieve over the loss of myself.  I grieve over the loss of what could have been.  And I fear the loss of my daughter, every single day.  I know me getting this tattoo might have been shocking to those who know me. It was to me, too.  And I don't expect many to understand.  How can one understand something they've never experienced, lived through or felt? So, it's okay.  I understand.  I know.  And so does Tom and those who love me most.

Here are some of the symbolic aspects of my tattoo:

Clearly the Weeping Willow Tree, bending in a storm. I told Theresa I didn't need it to look like a Willow Tree - in my heart, I know it is.
The tree is growing forward, despite being pushed back by a storm.
Theresa said that only the strongest of trees can grow in rocks/mountains, so that's where its growing. And we have climbed a mountain, made it to the top, and got knocked down again. 
The colorful leaves are hearts and are colored because we have to find happiness and joy despite being in a storm.

This is a small tattoo for Theresa.  She has gone on to bigger and more challenging tattoos.  But, she said she wanted to do this one for me. And I am so thankful.  I love it.  And I love that SHE did it for me.


I think Theresa is an amazing human being. She's beautiful, confident, talented and has done an amazing job with her life.  She was dealt some crazy cards, too, and she rose to the challenges.  We love her and Brandon and are so glad they are in our lives. Thank you, Theresa!!

Much love,
Christy xo

Friday, August 10, 2018

One year...

It has been one year today.

Last year on this day, we watched Harlie struggle to breathe, all day.  


It was agonizing. I sat there, trying to remain calm, telling myself that she was going to improve, and that she was in good hands at Boston Children's Hospital. 

I remember how hopeful we were when we walked our smiling, sweet voiced talking and laughing little girl into that hospital on the 8th of August. 


I fully believed that this surgery was going to make her life better. Who can, or should, live with their jaw fused, not allowing them to open or close their mouth? And she wanted to learn to eat food - by mouth! And if she was talking that well with her jaw fused, imagine how much better she could talk if she could open her mouth! 

So, it was an easy decision, and not one I doubted at all that day, or any of the days in the six months leading up to that day.

I don't even doubt it today. I just wish I had realized how critical her airway was and gotten her ENT involved way before we sent her into the OR that day.  If only...

At any rate, the 10th of August was awful, and that's putting it mildly. Tom had already gone home, and Maggie, my niece, was with me. After we had gone back to the hotel that night, my cell phone rang. I have never been called back to the hospital like that. I think all I said to Maggie was "Uber." 

Anyway, they had the consent form ready for me to sign when I got there eight minutes later. Dr. Mancuso was amazing. He was going to try to intubate her bedside, but decided that was too risky. 

They were in the OR way longer than they told me they would be. It was almost midnight. I was so afraid that she had died, that when he told me they had to give her an emergency tracheosotmy, I was relieved. Just minutes shy of her two year "decanniversary" (she got her trach out on August 11, 2015) she was trached again. But, one nightmare just morphed into another. 

Here are my posts from back then:






I don't want to rewrite them, nor relive them if I don't have to. I think I want people to know that for the past year, I have had these "apps" running in my background, all the time, draining my battery. 

I am sad. All the time. I just bury it at different depths depending on how much energy I have at the time. 

I am tired. Not the kind of tired that goes away with a couple of good night's sleep. The kind of tired that makes you daydream of going somewhere far away, all by yourself, just to sit and watch the sky change colors. 

I have tried to notice and remember every detail of her breathing for clues. Clues for me to give her doctors so they can figure out why she still can't tolerate a speaking valve. Or why she can't walk around the house without getting so out of breath. I never stop thinking about it. 

A year has gone by with virtually no improvement. The only thing that is better is that we are able to do trach changes. And, if I'm being honest, I haven't done one in months. Her nurses have done them. I did them for nine plus years. And now the thought of doing one makes me cringe.

But this girl still manages to be happy, at least on the outside. I know she hates the trach and all that comes with having it. But she still smiles. And makes jokes. 

Harlie with Mabel. 
And this girl keeps us going. She is stronger than us. 


And we are full of love for her, and each other. So somehow we keep on keeping on. I just don't want you to think it is as easy as we might make it look sometimes. It is hard work, all the time.

We couldn't do it without you and your amazing support. Thank you for loving our sweet Harlie and the rest of us.

Much love,
Christy xo



Saturday, July 14, 2018

We Heart Harlie and Friends Gala

I haven't been able to blog about the exciting new things happening with We Heart Harlie and Friends. But, we are having our first Gala, Saturday, September 29th. It will be at the Short Pump Hilton. Ticket price includes open bar for three hours, appetizers, a seated dinner, live auction, raffles, dancing and so much fun!



Normal ticket price is $150, but the early bird special is $125, which ends tomorrow! So, get your tickets now! Register here. 

I just want to tell you what this money does to help families like ours... that Taylor Swift concert we just went attended? We could never have gone if it weren't for We Heart Harlie and Friends. Not only does the money raised help provide travel to hospitals, therapies, educational help, etc., but it helps give our kids great experiences and memories! And sadly, those don't come easy to our kids.

We are looking for sponsors and items for the auction and raffles. So, if you have an item you want to donate, or a business that wants to be a sponsor, PLEASE let me know!

Thank you to all of those working so hard to make this happen! And thank you for coming and wanting to support our kids and their families!!

I hope to see you there!!

Much love,
Christy xo

Taylor Swift

Wow. That was the best show I've ever seen - hands down. I just can't thank Heather (our awesome social worker at Children's National Medical Center) for thinking of Harlie and getting us these tickets. Ahhhmazing!

When Heather first called me about the tickets, I asked her if I could think about it. To be honest, I've been struggling lately. I have no energy. The smallest of tasks feels overwhelmingly difficult. So, getting us to Fedex Field in Landover, Maryland, felt way too hard.

But, I called Maggie, my niece, to see how she felt about it. She is a huge Taylor Swift fan. She about hyperventilated on the phone when I asked her if she would want to go. I recognized that this was an amazing opportunity. So, I knew I had to make this happen.

We went to FedEx Field for the U2 concert last summer. And getting out of there and home is brutal. Driving home on 95 at 1am is not my idea of fun. Tom couldn't go (more like he wouldn't want to). So, I thought through all the options. Here were the logistics:

  • We had to drive to CNMC in DC to pick up the tickets. 
  • Then we would drive to FedEx Field.
  • I knew it would be hell getting out of the parking lot. 
  • They are always doing construction on 95 in the middle of the night, so I knew traffic would be a nightmare, even after leaving the stadium.
  • Staying in a hotel wasn't an option. Harlie has way too much equipment to pack and set up, then pack and set up again. Plus, there was no time to check in before the concert. The soonest we could leave was 12:30. I couldn't make that work. 
  • I would have to be in charge, drive, etc., and knew I would spend all my energy on that instead of having fun and enjoying this time with Harlie. 
So, I decided to look into hiring a car service to do all the driving for us. It was the only way we could go. My friend Bethany suggested that I call TNT Limousine. I explained what I was trying to do and they were so awesome and I think they gave me a great deal. They gave us Allen and a Cadillac Escalade (so her wheelchair could fit in the back) for 14 hours.

It was amazing. I packed a cooler of goodies and we listened to Taylor Swift the whole way there. Here are lots of pictures...

Harlie, Caylee (one of her nurses), Maggie and me. 


We had great seats - Section 126, Row 4!






We went in earliest we could to see if we could get wheelchair accessible seats. Harlie cannot stand for long, so I wasn't sure how she would see anything. Unfortunately, they didn't have 4 seats together in handicapped seats, so we decided to keep ours and make it work somehow. We gave her a piggy back ride down the stairs to our seats. And the guy checking tickets said he would watch her wheelchair at the top of the stairs. She stood on the seat and we took turns supporting her.

So, I'm going to embarrass myself here, but when Taylor Swift came on and Harlie "cheered" I cried.


I couldn't help it! The loud, energizing music, her excitement, the thought that she was having a great experience and we were making good memories was just too much!! What a difference from what could have been.  I wonder if I'll ever be free from that thought.

Maggie and Caylee supporting Harlie. 
 There were fireworks...


fire...

lights...

 snakes...


and confetti...





She sang two songs right in front of us.




We all got bracelets that lit up throughout the show. It was pretty cool.



At one point, the girls in the rows closer to the stage asked us to switch seats so Harlie could be closer. They even helped support her standing, too.


It is amazing what some people notice and then how they choose to act. There are so many good people left. The negative ones are just louder for some reason. I would love to see that change in time.

It really was an AMAZING experience. I want to write Taylor Swift and tell her that she made my daughter want to stand, even though it was so hard for her, for two hours. I think that is one hell of a compliment. I put my foot in her chair and let her sit on my leg to give her breaks. Whoa, that was a work out for me!

We got home at 2:30am. We were exhausted. But, it was so worth it. I liked Taylor Swift before her concert. But I loved her after.

I'm so thankful that they donated the tickets to the children's hospital and that we got to go. And I'm so thankful for good memories.

Much love,
Christy xo








Wednesday, July 11, 2018

Ambition and a concert...

Hi! I am so sorry it has been so long since my last update. Life is busy and I have been having a very hard time keeping up.

I have so much to tell you, including an update on We Heart Harlie & Friends. This will include the Corn Hole Tournament held back in June, and our exciting first ever Gala coming up in September! So, stay tuned for that.

For now, I thought I would start with what happened on the last day of school, on June 15th. In the weeks leading up to the last day I received a letter form Harlie's school informing me that she would be recognized for her "ambition." Each quarter the school focuses on a word, like determination, empathy, ambition, etc. And at the pep rally at the end of the quarter they call out the student's names who emulated the word. Each parent gets a letter that lets them know their child will be recognized, so they can attend.

So, me and Harlie's nurse, Caylee, took Harlie to school for the pep rally that day. The students stood up as they heard their names called. You should've seen Harlie's face when she heard her name. She was so surprised! When she got out of her wheelchair to stand, everyone clapped for like two minutes! It was amazing. Truly.



I tried so hard not to cry, but it was impossible. It felt so supportive. It felt like everyone knew we almost lost her and that they were so glad she was standing there, still with us, with a smile on her face. It makes me cry every time I think of it.

I think what happened to Harlie can make people so uncomfortable that they don't want to talk about it. So it is the simple acknowledgement from the students, the staff and the other parents there that speaks to me the most. So, if you were there that day, thank you. Truly.

Harlie started her tutoring with Ms. Johnson and she made this folder for her school stuff. So cute!


And we just got Harlie's hair cut. It was too long to be practical with the trach. It was constantly in the way. I'd say she feels pretty good with the new cut.


Okay, there's so much more to tell you about. One last exciting thing before I go...

Our wonderful social worker at Children's National Medical Center called me last week. She said that Harlie has told her several times that she wants to go to a concert. So, when she heard that the hospital received some tickets to the Taylor Swift concert, she thought of us. So, we are headed to FedEx Field (where the Redskins play) to see Taylor Swift tonight! Woohoo!

So, I promise I will post again later this week.

Thank you so much for all your support!

Much love,
Christy xo

Tuesday, May 22, 2018

Three months Post-Op

Yesterday marked three months since Harlie's unplanned laryngotracheal reconstruction (LTR). And what a difficult three months it has been. Honestly, it feels like it has been longer than that. I guess it is hard to differentiate when life hasn't been the same since August.

But, despite how horrible some of the past 3/9 months have been, I am so happy to finally tell you how good she's doing. She is better right now than she's been since August 8, 2017. That dreadful day changed everything. But, I'm trying to be positive here... And since she is better, I am much better. I haven't been myself in so long. I can't tell you how hard it has been to be so fearful of losing her all the time. Since her scope on May 11th, I have been able to breathe and relax a little.

Anyway, she is back in physical and speech therapy and goes about four days a week. She likes it and seems to have fun despite working hard while there. It amazes me how she doesn't push us back sometimes. No matter what she achieves, we just ask for more. And she keeps on giving and keeps on trying. Crazy.

Last night we all went to walk the dogs. We are dog sitting my sister's chocolate lab, Rosie this week. And the third dog makes it really hard for me to walk all three by myself. So, I made the whole family go with me. I went to get Harlie's wheelchair out of the car, but Harlie went to her bike and said she wanted to ride it.

She got this bike back in December. I don't think I was ever able to blog about that day. Her physical therapist at the time, Tracy Morse (been with us since Harlie was just a few months old) nominated Harlie to receive a bike from Help Charities. They had a thing with Santa there, and presented the bikes to the kids. It was so great.




Harlie and Tracy

Well, needless to say, she hasn't been able to ride it. But, they started working with a bike like this in physical therapy so she's gotten some practice lately.

There wasn't time to make adjustments to her bike before the walk, so ignore that she isn't fitted properly. Tom did that when we got back. Anyway, she motored on down the road, with NO oxygen AND she was wearing her speaking valve! And just like she did walking to school last year, she started singing the song from Trolls, Get Back Up Again. I don't know how she does it. But we are so grateful she does!





And her teacher comes today for the first time since mid-February! I can't imagine missing so much school. That must be so weird for her. I know she will be happy to get back to it. Last night when we walked by the school she asked when she can go back to school. Hopefully she will be able to attend in the fall. We'll have to see how this summer goes.

Well, that's all I have time for today. It feels so great to post a good update for a change!

Thank you so much for all your unwavering support! All of your comments, texts, emails, calls, contributions to Harlie's care, and general acts of kindness are appreciated more than I can say!

Much love,
Christy xo


Friday, May 11, 2018

Bronch Results

We had to leave the house this morning at 5:30, for our appointment in DC. I got up at 4:00 and started to get ready. Tom woke up shortly after to help me. He is so good. While I was busy getting myself and Harlie up and ready (had to give her two different breathing treatments) and packed, he took the dogs out, made me coffee and a breakfast sandwich to go, and he went and started my car. And that's when he noticed that I had NO GAS!

He came upstairs and said something about getting gas. I told him I didn't need to because I just filled up Wednesday night and I haven't really gone anywhere since. He said no way, you're past empty. I almost started to argue with him, because I fully believed that I got gas on Wednesday night. 

Wednesday was my Mom's birthday and we all went out to dinner to celebrate. Wednesday was a really busy day with lots of running around. Sometime during the day, my gas light came on. I had NO idea when. Did I mention that it was a crazy day? So, I was going to stop on my way to dinner. But, then I just didn't have time. So I said I would push it till I was on my way home. In my mind, that's what I did. But I didn't because I ended up staying later than I intended and was late getting home. So, I forgot to stop!

On Thursday I never left my house. So, I didn't give it another thought. 

So, it was 5:30am and I had NO gas. Tom took the gas for the lawn mower from the shed and put it all in my car to buy me time to get down the road and find a gas station that was open (the ones by our house were not open). 

That's how my morning started. I have run out of gas twice. And it would be four times if it weren't for Tom. Not that long ago I asked him to go put gas in my car. He ran out of gas on the way to the station less than a mile away. He's such a good husband. ☺

Anyway, back to Harlie, she was a champ, as always. Dr. Pillai (pulmonologist) came out to talk to me first. He said he did not find any casts! He said her lungs actually looked really good. I am so relieved! I can't believe it, but it looks like she got the best case scenario!

He was thinking this probably means she does not have Plastic Bronchitis and she could stop the Heparin breathing treatments. And we probably don't have to go to Children's Hospital of Philadelphia for the lymphatic mapping. Hallelujah!

Dr. Preciado came out then and told me that he cut something out of her airway (not remembering his words right now, maybe scar tissue). Her stoma is still really friable, and she bleeds so easily.  But the reconstruction looks good. The loss of her voice must have been due to inflammation from the virus a few weeks ago.

We started the Heparin breathing treatments on Monday and by Monday night, her voice was already stronger. After four days of treatments, she was able to tolerate the speaking valve again. And this morning in pre-op, she was so talkative and clear! Maybe the Heparin helped, maybe it was coincidence. I don't think it makes sense that it would have helped. But I've learned that in medicine, not all questions get answered.

He said he wants to do another scope in six weeks. And Dr. Pillai said he could take a quick peek in her lungs again and see if anything changed.

So, I should be able to relax a little now. Which will be a really nice change.

They admitted her to the CICU for the night and will send us home in the morning.

After she got settled in and some time had passed, Dr. Pillai came by. He said he let her docs in Richmond know about the bronch. They had a difference in opinion on what to do from here.  They want her to continue the Heparin treatments and they think we should still go to CHOP for the lymphatic mapping.

So, I need to talk to the people at CHOP to find out more about what this mapping means and what she has to go through for testing. Then we need to make a decision on what we want to do.

For now, I'm happy because I am WAY less fearful. I'll start to think about going to CHOP next week. 

Unfortunately, I think I am coming down with something. I have gone downhill since this morning and feel so horrible now. I was hoping it was allergies, so I took some medicine earlier. But I am feeling worse by the minute. It has made writing this post so much more difficult. I'm falling asleep as I type this!

Before I go, today is Murphy's 14th birthday. It feels weird to not see him on his birthday. The other night I told him I was really sorry that Harlie and I wouldn't be home for his birthday. He said it looked like I didn't have a choice, so he understood.

Since we couldn't celebrate today, we had his birthday dinner last night. I got him an ice cream pie from Gelati Celeste for his cake. It was amazing!


So, Happy Birthday Murphy! We love you so much!

Thank you for all the support, kind comments and thoughts and prayers!

Much love,
Christy xoxo

Thursday, May 10, 2018

Our Ever Changing Life

I'm so sorry I haven't posted in so long. I wish I could say it is because we have been out having fun, living life to the fullest. Unfortunately, that isn't the case. A lot has happened over the past few weeks.

While coming/being home has been fantastic, reacclimating to our normal life has not been easy. I feel like I am trying to merge onto the busiest highway, in the crappiest car. Life doesn't care that you're beyond tired, or that your brain doesn't work as well as it used to. It doesn't care that you went through something traumatic. The boys still have cross country practice, swim practice and homework. The house still needs to be cleaned, laundry still needs to be done, pets still need tending to and I still have work to do at my part-time job. Life doesn't stop so you can catch up.

Here's what I started to write a couple of weeks ago:

Thursday, April 26

I don't even want to write this post. But, I suppose it does give you an idea of what this roller coaster of living a special needs life is like. One day you feel over the moon, the next, you're freaking terrified.

Things were really good for four days. Four whole days.


Therapy was going well and she was able to go three days, Monday, Tuesday and Wednesday. Then Wednesday night she had a fever. And she has had a fever every single day since. On Friday (April 20th), we took her to her doctor. She tested negative for the flu and strep. But, she put her on antibiotics to try and prevent a secondary infection.  She has missed six days of therapy now. It just kills me how everything is so difficult for her.

For the most part, she seems okay now. She spent several days in bed in her room. But, the past few days she's gotten up and come downstairs. Tonight, we took her with us for a walk with the dogs. The worst is that she has no voice. And she keeps asking what's wrong with her voice. It has now been eight days since her first fever and still no improvement in her voice. I guess I have to give her more time. But, I am so scared something went wrong. 

There's also been a new issue with her that I haven't been able to blog about. 

Back on February 8th, I started Harlie's breathing treatment and went into the kitchen. Keep in mind that at that time, we were unable to safely change her trach and were trying to keep her from plugging. Soon after the treatment started, she started coughing an awful sounding cough. It was a sound I had never heard before. It was so strange and alarming that I ran over to her. I could see something in her trach, like debris of some kind. I tried to suction it, but it was obvious that wasn't going to work. So, I grabbed it with my hand and pulled it out. 

It had a dark tip that was hard, like plastic but the rest was white, and rubbery and didn't break, like mucous would. It kind of looked like a worm. It was so odd, that I put it on a napkin and took a picture of it. I put it next to a business card for size comparison. 

Then, when we went to DC for her surgery on February 21st, I showed her ENT the picture. He said it looked like a cast and that I should talk to her cardiologist. 

So I did. She told me it is from Plastic Bronchitis, which can develop in patients with Fontan physiology and high cardiopulmonary pressures (Harlie has both). She also told me that the leading research for that disease is being done by Children's Hospital of Philadelphia (CHOP), and that we might have to go there. At that time, Harlie had bigger fish to fry (in the CICU) and we couldn't do anything about it anyway. I had to focus on other issues.

Fast forward to last week, our first week home. On Tuesday (the day before her first fever) she started coughing, making a weird sound. It sounded just like it did when she coughed up that cast in February. I tried to stay calm, but those casts can occlude her airway (which is terrifying). So, we worked really hard with saline in her trach and saline breathing treatments. The sound seemed to come and go. And in my scared mind, it was as if the cast was stuck below her trach. By Tuesday late afternoon, we decided to change her trach. There was a plug in the trach we removed and at first, I was relieved that maybe that was the problem. However, just a few minutes later, she started making that sound again when coughing. Ugh!

So, I emailed her cardiologist the next morning (Wednesday). At this point, none of her specialists here in town know anything about what happened in DC, or about the cast in February. Within 25 minutes, she called me. She explained some risks with Plastic Bronchitis (PB) and told me Harlie needs to see her pulmonologist asap. I told her I'm afraid that I'm being paranoid. She said I need to be hypervigilant.

Since then, I've been working on seeing him. We spoke via email the other day and he told me a little more about PB. He also included the Chair of Pediatrics, who is also a pulmonologist and is an expert in PB. He said this in an email to me:

The Children's Hospital of Philadelphia/Children's Hospital of Richmond plastic bronchitis consortium follows the largest number of PB patients in the world and the International registry for PB is located here at ChOr@VCU. I discussed management with Dr Schmidt this morning and have attached a brief chapter we recently published in the European Respiratory Society handbook. Happy to work with Dr Schmidt to keep Harlie well.

Our appointment is this morning at 10am. I read the paper he sent. And then I read some more about Plastic Bronchitis.

Here is a link:

http://www.chop.edu/conditions-diseases/plastic-bronchitis

Here is a picture of what a cast can look like.

I asked him if this was removed or coughed up. He said, believe it or not, adults can cough up something like this. This is what Harlie's looked like:

And this is the picture I took on February 8th.


So, are there more casts in there? Is this the cause of her exercised induced intolerance?

So, just to recap, Harlie now has heart defects, including a pacemaker, congenital lung disease, with only 3.5 lung lobes instead of 5, major airway problems and now Plastic Bronchitis (which is called a devastating disease in papers).

WHAT THE HELL?!

Any ONE of those things can be life threatening.

I just want my daughter to breathe easy and feel good way more than she feels bad. Is that too much to ask? Screw sports or other extracurricular activities, popularity, trendy, advanced classes, college, or anything else that most parents consider success in children these days. I want her to live and be happy. And honestly, that goes for my boys, too.

I have to pause. We have to go to our appointment. I'll let you know how it goes.

Friday, April 27

Yesterday we met with her pulmonologist, Dr. Schmidt and the Plastic Bronchitis expert, Dr. Rubin. Basically, he said if someone coughs up a cast, they almost always have PB. So, we have to assume she does. After reading the paper, and a bunch of stuff on the internet, I want to know if she has anymore casts in there, waiting to come up.  And I want to know, like now.

He said he was going to send a report to CHOP and ask for them to see her asap. I guess the first step is some kind of testing. The negative is that, according to what I read on CHOP's website, they use some special MRI. But, Harlie has a pacemaker, and cannot have an MRI. So, we'll have to see what they do in situations like this.

They want us to start one of the few treatments they think might help slow the production of these casts, inhaled Heparin (Heparin in a nebulizer). Dr. Schmidt gave me a really nice, heavy duty nebulizer. We have to give these breathing treatments every 4 hours for 48 hours, then we can go to 3 to 4 times a day. To put this possible diagnosis in perspective, Dr. Schmidt said he has never prescribed inhaled Heparin before.

Harlie's constant ability to take the path less traveled is exhausting. It makes me so fearful, because pretty much anything is possible. There is no comfort in the words rare, almost never or unlikely.

That night, I went in to say goodnight to Harlie. I could tell she needed to be suctioned, so tried to suction her. The catheter couldn't get through. Her trach was completely occluded. She grabbed the catheter out of my hand and tried to suction herself (as if I was doing it wrong). She got the same result, and looked at me like, "WTH?"

So, I called Tom and said we had to do a trach change. I had a very hard time getting the trach to go in. So much so, that I said to Tom, "I can't get it in." I could tell she was getting uncomfortable, so I finally just had to force it in. She bled and cried. It was terrible. And so unsettling. Tom hung out with her and they looked at photos on his phone until she was better.

I emailed her ENT and let him know what was going on.  It felt like all the positive from her surgery in February was gone.  It was crushing.  He said he wanted to see her the following Thursday.

~~~~~~~

Unfortunately, I don't have the time to give this post the attention it needs.  So, I'll be really concise to try and catch you up from here.

It is now May 10, and I've written this post over the past couple of weeks.  It has been hard to write because I've not been in a good place.  I have been so fearful of losing her, and that is very difficult to live with every day, month after month.  It wears on you.  And it has made me pretty angry.  I found myself thinking that what is being asked of her and us, is just too much (inhuman, really).  I mean, we are only regular people.  How much are we supposed to handle? I'm screaming uncle and no one is listening.  Anyway, it hasn't been pretty.

But, we went and saw Dr. Preciado last Thursday and it was a good appointment that made me feel a lot better.  So, I am better.  Plus, Harlie is better.  She is back to her cheerful, happy, more energetic self and so I am so much better. I am still fearful, but way less than I was.  I will fill in the gaps tomorrow while I'm in the hospital.  We are headed back to DC tomorrow for a scope of her airway and her lungs (to see if she has anymore casts in there).  Which means that I might get some answers very soon!!!  And I am very glad about that!

So, keep your fingers crossed that her lungs aren't a mess.

Thank you, as always, for your support!

Much love,
Christy xo

Hardware Removal Day

I'll talk about pre-op day first, then I'll blog about today... Yesterday we did the whole drive through testing thing.  That wa...