Friday, June 13, 2014

My Speech, and a few other things.

A few weeks ago, I got a call from Mandy at The Pediatric Connection, the company that supplies all of Harlie's equipment, supplies and nursing.  She asked if I would come and speak during their annual meeting, July 11th.  I was in the car at the time, driving Cooper and his friend James to their swim lessons at Aqua Tots and, if you can believe this, I was running a little late.  I know, crazy!

Anyway, she said they ask a physician to speak and a family member to speak, and they wanted me to speak as the physician.  Just kidding.  As the family member.  Sigh.  As much as I worry and fret about these public speaking engagements, I don't feel as though I can turn them down.  So, of course, I said yes.

But, it was July 11th, so I had plenty of time to worry and fret about it later.

So, last week, Brandy called Mandy to ask her a question about supplies.  And Mandy ended the conversation with, "See you on Wednesday!"  And Brandy, confused, said, "What's on Wednesday?"  And Mandy was like, "Our annual meeting - Christy is speaking."  And Brandy was all, "Oh, Christy thinks it's JULY 11th."  Mandy said, with a nervous laugh, "No, it's JUNE 11th."

Crap.

Okay, I have a few days.  I can do this.  No problem.  Tom was headed out of town for a guy's weekend.  But, I had a nurse coming for the weekend, so I was good.  Brandy was going on vacation, but my nurse said she could stay and cover her two days, Monday and Tuesday, too.  Great!

Unfortunately, things didn't work out that way.  Tom left and my nurse had a family emergency that didn't allow her to come as planned.  No nurse - for 5 full days.  And by full, I also mean FULL of commitments.

I scrambled and luckily my friends and family pitched in to help.  I missed the adult pool party on Friday night.  And, if you know me, you know how much I HATE to miss a party!  We just stayed home and watched a movie.  It was good.

Then on Saturday, Nancy, my sister-in-law, came to get Murphy and take him to his swim practice.  I sent Cooper down to my friend Bethany's house.  And I put Harlie in the jogger stroller and tried to get in a few miles.  It was hot and the stroller was heavy (kid, suction machine, oxygen tank, you know... the usual) and I was happy to get in 4.5 miles.

After I got home, I got Cooper and we rushed to the pool.  Hung out there for a while and came home.  After running around (literally) and working so hard to make sure everyone was safe, happy, fed, etc. Cooper whines in the car on the way home, "Awww, I never got to do a belly flop off the diving board."

First of all, who the hell wants to do a belly flop off the diving board?!  Seriously, what is wrong with you, kid?

Secondly, for the record, no one prevented him from doing this (although given the chance, I would certainly try).  He had more than THREE hours to do what he wanted at the pool and clearly, he never chose to do that.  Which, I wish I could contribute to good sense.  But, clearly, he has inherited my poor time management skills.

And, while driving home, exhausted, I couldn't help but wonder, is it ever good enough?  As parents, and especially moms, is all our hard work to make their lives richer (as in good times, excitement, fun, etc.) ever good enough?

The rest of the day was spent trying to get them to stop annoying each other, and most importantly, me.  It was great fun.  Not.

We all survived, and that's what's most important.  But, I never got two seconds of time to myself to write my speech for Wednesday.  No problem, I thought.  I'll have time when Murphy's at school on Monday and Tuesday.  Well, with no nurse, that proved impossible.  I got some time Monday night, after everyone went to bed.  But, not enough to finish it.  Mandy said they wanted me to talk for about 15 to 20 minutes!  This was no quick write.

Again, Tuesday night, I worked on it and finished it.  I felt pretty good about it.  But, was a nervous wreck anyway.  I don't know why I fret about these things so much.  But I do.  I always have a sense of, it's just my life, why would anyone want to hear me talk about it?

But, it was the annual meeting of a pediatric home health company.  They must care about kids and their families!  It's their business!  And, as it turns out, they do.

I woke up feeling really crummy.  My throat was sore and I could not stop coughing.  Every time I tried to take a deep breath, my lungs needed to cough.  Great.  How was I going to get through 15-20 minutes of talking?!?!?

When Jamie got here, I ran up to Walgreen's and got some cough syrup.  I rushed back home, took a shower, got ready, Kelly (my niece) came over to watch Cooper and Jamie, me and Harlie left for the Science Museum.  I never ate breakfast and was feeling really horrible - no appetite, yet hungry, sick, nervous, tired, etc.

After we got there a bunch of the employees I know (respiratory therapists that have been to our house over the years, nursing people, etc.) came out to say hello.  And a few people said they were excited to hear our story.  Crazy!

When it was time for me to talk, Mandy walked us all up to the front of the room and introduced all of us.  She had Harlie say "hi" into the microphone and her little voice was so clear and cute - the whole crowd melted!  Good Harlie, get them all warmed up for me!

Then it was my turn.  I stood behind the podium (which was great because I didn't have to hold my papers).  I told them I woke up with a sore throat (you could definitely hear that my voice wasn't right) and said I apologize if I cough.  Then I started.  As soon as I said my name, I wanted to cry.  WTH?!  So, I said, "Sorry, it's hard to talk in front of so many people."  And after that, I was fine.
One thing I want to say before you read my speech is that it was a very "cozy-like" feeling in the room.  Everyone was sitting at big round tables (about 75 people).  And as I spoke, I felt like they were part of it.  They laughed when I wanted them to find what I said funny and they cried at other parts (I didn't necessarily want anyone to cry, although I did a little, too).  Some things are still so hard to say out loud.  And when I was telling them the Harlie-funnies, it was like I was talking to a big group of friends - they were laughing and saying things like, what?!, no way! and oh my gosh!  It was really, really great.  And I got to show some pictures on the screen, which totally makes a speech!

Anyway, here is what I said (sorry the font is all messed up because I cut and pasted, and now I can't fix it):


Hi. Hi. My name is Christy Holton and my husband and I have three children.  Murphy is 10, Harlie is 7 and Cooper is 5.  Yes, we had another child after Harlie.  Might as well get it out there that according to most of my friends and family, I’m pretty crazy.  


Anyway, Harlie was born with a handful of challenges.  I always struggle with how to tell people about her, without it being overwhelming. In brief, she has three main “things”:  


When I was 16 weeks pregnant, we learned through ultrasound about the first “thing” - there was a mass growing in her chest.  This mass was preventing normal lung tissue from developing on her right side.  To learn more about it and see what our options were, we were sent to Children’s National in DC.  


It was there, at 22 weeks along, that we learned, about the second “thing” - she had some serious heart defects.  Basically, her heart formed in a mirror image.  So everything that was supposed to be on the right, was on the left, and vice versa.  Her right ventricle was too small, and she had a large opening between her left and right ventricles.  


The combination of these heart and lung defects left us with only a 5% chance of ever bringing her home.  If she made it to delivery, she would need to have heart surgery within a few days of being born.  We waited and hoped.  We hoped that it wouldn’t be as bad as they were thinking.  And we hoped that there wouldn’t be more “things” that couldn’t be detected prenatally.


I was induced in DC on Monday, September 25th, 2006, three weeks before her due date.  As soon as she was born, I saw she didn’t have an ear on her left side.  Something definitely looked different about her face.  And she wasn’t crying.  They took her away immediately.  It wasn’t long before a doctor came in with a list of issues.  I remember the casual way in which he told us that she would need a trach to live.  She was in the OR at the time, getting intubated, because she couldn’t breathe.  I remember thinking that I had never seen a baby with a trach before.  Oh, how little I knew...


Later that day, we learned about the third “thing” - she has Goldenhar Syndrome.  It’s an asymmetrical craniofacial syndrome.  In her case, she’s missing her left ear, her left eye didn’t close properly, she had skin tags on both sides of her face, and her jaw was severely underdeveloped, which caused an upper airway obstruction.  This did not allow for breathing through her mouth and nose.  And since she couldn’t breathe, she certainly couldn’t eat by mouth, so she needed a g-tube.  It took us a few years, but we eventually learned that she was hearing impaired, even in her good ear.  


She spent her first 6 weeks in the hospital.  We learned she had some spinal defects, too.  She had her first open heart surgery when she was 4 days old.  She remained intubated (and they wouldn’t let us hold her) until she got her trach and g-tube at 16 days old.  


All total, Harlie’s had 40 surgeries so far.  I’ll just hit the highlights.


She’s had 5 heart surgeries and has a pacemaker.  After her second heart surgery, she had a chylothorax and spent more than two months in the hospital.  And she’s had 7 heart caths. This is her at six months, after her second heart surgery.





When she was 4, she had spinal fusion surgery and spent weeks in a body cast.   The bone graft they inserted in her back, died and caused an infection.  She had a wound vac and underwent 4 debridements in 7 days.  It was one of “our” worst recoveries ever.  



In our quest to give her a better airway - one that does not require a trach, she has had 4 jaw reconstructions.  The first two involved craniotomies and they harvested bone from her skull to put in her jaw.  Both recoveries required her jaw to be wired shut for 10 weeks post-op.  And in the second one the bone graft died, and left her with an infection that put her into cardiac arrest in the OR.  Clearly, they were unsuccessful for decannulation.  





Not ready to give up, we did more research and when she was five, we took her to Boston Children’s Hospital, where they harvested her fibula bone from her lower leg and created a jaw bone on her right side.  That went great.  And while she gained a lot of better oral function in swallowing and trying to talk, it still did not give her the airway she needed.  So, last summer, they did jaw distraction surgery.  

That’s where they essentially break the bone and put pins and rods on both sides of the breaks.  We turned the pins each day, re-breaking the bone, which caused new bone to grow.  We did that for 27 painful days.

This is the screwdriver-like tool we used to turn the pins.

 

And the pins are there, under her ears.




That was our most successful advancement and we believe she has a really good airway today.  


Of course, nothing is ever simple for this girl, which brings me back to the first “thing” we learned about her - her lungs.  So let me go back...


That chest mass that we found prenatally continued to grow and at 10 months old she had to have most of her right lung removed.  


This allowed her to eventually come off oxygen and she did well for many years.  Unfortunately, through a recent heart cath and CT scan, we learned that what is left of that right lung, does not have enough alveoli to produce enough oxygen for her growing body.  While the rest of her right lung grew, it either didn’t grow normally, or what grew has been damaged through years of anesthesia, pneumonia, and atelectasis, leaving her dependant on supplemental oxygen for the foreseeable future.  


It seems that the best way to deliver the oxygen is through her trach.  So, after all we’ve done and all she’s been through, decannulation is off the table.  For now, anyway.  


I think it’s safe to say that her lungs are not going to carry her as far as we would like.  And our next step is to see what we can do to give her the best life possible for as long as possible.  


I know that sounds like a lot.  And it is.  But, I can tell you, without a doubt, that she is a very happy little girl. 


And clearly, she knows how to relax.

She is very loved and she knows it.  She now wears two different kinds of hearing aids and is hearing very well, which has really expanded her vocabulary.  And every day she says more and more things that we can understand.  She signs and she’s learning to read and write.  She can count by 10s and 5s and she’s working on learning how to count money.  Overall, she is really doing great.  Which is amazing when you think of all she’s been through.  


When I think of the past seven and a half years, I don’t know how we’ve all survived - Harlie included.  I can tell you for a fact, that we couldn’t have done it without our home health nurses.  


I remember being in the hospital before we brought Harlie home.  They told us that we were going to need home health nursing.  I was terrified!  I actually said, no thanks!  There was no way I was going to let some stranger in our home for any kind of child care.  Every shaken baby story seems to be about a nanny in a private home.  No thank you!  


We brought her home November 2nd.  I think I lasted less than a month.  She was 24-hour care, no doubt.  And my husband and I quickly realized we couldn’t keep up.  After almost fatal trial and error, we learned that she could not sleep in her room upstairs.  So, we moved her downstairs, into our living room.  And we slept on the couch.  We have a sectional, and he would sleep on one end, and me on the other.  In thinking about those many months, I don’t know how we did it.  It was harder than I could ever imagine or ever describe.  


By December, I didn’t know how I was going to handle getting through Christmas.  We had a two-year old son, after all, skipping it wasn’t an option.  So, I broke down and called some nursing agencies, and one found a nurse for us.  Leaving Harlie with her was so scary.  And after only a few days, it was clear she was not the nurse for us.  Harlie was on continuous feeding then.  And when I returned home from Christmas shopping I found out she had not fed her the entire time I was gone. (here, I could hear, what? and oh my gosh! from the audience) I thought we were just going to have to go it alone and make it work, somehow.  


During one of our first visits to the pediatrician, Harlie’s trach was a mess.  So, the doctor called her nurse in and she was like ______ and voila!  (the blank is where I made a hand motion to describe her "magic" of working with her trach) I said, whoa!  How’d you do that? She told me that she used to be a home health nurse for a girl with a trach.  I lit up when she told me that.  I had known this nurse for years - since this was my son’s pediatrician, too - so she wasn’t a stranger!  I begged her to come work with us.  Every time we were there (which was a lot) I would ask her again.  After I told her about what happened with that nurse, she finally gave in.  I guess she felt sorry for us.  Her first night was Christmas night, 2006.  And seven and a half years later, Dawn is still one of our nurses.


She started working some nights for us.  Just two nights a week allowed us to actually sleep in our own bed and gave us the energy we needed to get through.  But, the writing was on the wall.  I needed more help than that.  Harlie was on continuous oxygen and continuous feeds.  She had terrible reflux and vomited all the time.  And she had an average of 3 to 4 doctor’s appointments per week.  So, we started looking for another nurse.  A friend of ours knew a nurse and sent her our way.  We clicked instantly.  She started in February of 2007, and Brandy is still with us today.  All total, we have had seven nurses, and we were unhappy with only two of them.  Not bad.  


And for the girl who said “no thanks” to home health care nursing, I cannot imagine living without them.  


Our nurses allow us to try and live as much of a normal life as we can.  Tom and I go on as many date nights as possible.  During the day, they have become my partners in managing Harlie’s health care.  They help me come up with feeding and medicine schedules.  They help me figure out what’s wrong, when I should stop and pay more attention to an ailment.  They help me with ordering her supplies and calling in prescription refills.  They allow me to focus on a conversation with a doctor during an appointment.  They allow me to be a mom to my other children.  They allow me to have a life.  A life where I can have friends, go to the gym and run.  Tom is a cyclist and I am currently training for my second marathon.  I might have mentioned earlier that I’ve been told I’m pretty crazy.  

You would think that with experience, I would get better at handling this life we’ve been given.  But, I still find it challenging to manage.  I forget a lot of things and I’m easily distracted.  We’ve been ordering supplies almost every month for the past seven and a half years.  You’d think I’d have it down pat.  But, I don’t.  It will be Friday (which is our delivery day) and I’ll realize we never ordered more oxygen tanks.  



Our house is a crazy place, one of my favorite respiratory therapists has called it “organized chaos.”  I think the “organized” is a bit of a stretch, but I certainly appreciate the encouragement.  Cooper will be starting Kindergarten in the fall, so I’m hoping things will calm down at home while he’s there.  


As hard as the last seven and half years have been, they’ve also been wonderful.  While we have experienced the lowest of lows, we get the perks of experiencing the highest of highs.  Literally, every day, Harlie amazes us with something she says, or does.  Noteable recent events are when she bolus fed herself a can of pediasure.  And just a few days ago, after being without nursing for a few days in a row, I jokingly said, “Harlie, you need to be suctioned, go do it.”  And she did!  She didn’t wash her hands first, and she touched the catheter like nobody’s business, but she did it.  And she was so proud!  


She’s a smart, funny, sweet girl, who complains so little.  And our nurses love her and she loves them.  They have become part of our family.  And they have been an integral part of helping her live the best life possible.  

Here, I ad libbed a bit. I looked up and said something like, "I don't know what all of you do for Pediatric Connection, but I can tell you that I feel like you are all on my team. If what you do helps someone else do their job better, which ultimately makes our life better, it matters.


So, thank you.  Thank you for all you do to help us live this life.  


For being understanding when I forget something or can’t remember what something is called.  


For handling the paperwork, so I don’t have to see it.  Or file it.  Or do anything with it.  


For delivering our supplies and packing the boxes accurately so I get everything I need.  


For checking our equipment and making sure that the machines are working right and for replacing them, when they aren’t.  


For coming to our house at all hours of the night because her heater won’t stop alarming or she needs a bigger oxygen concentrator.


For recruiting nurses to help families like mine, and for treating our current ones well so they stay happy while working here.  


So many things you do makes our life better, even if you don’t always know it.  And that’s a really big deal to me and to Harlie.  

Thank you so much.


And they all started clapping and gave me a standing ovation!  I was so moved!  I was trying so hard not to cry.  I think I was up there for about 15 minutes, give or take, and I didn't cough ONCE!  Wow!  

Then Mandy took the microphone and told everyone that they wanted to give Harlie a gift.  The last time she was in the office she loved their giant giraffe.. here is the picture from that day...



So they gave her a huge stuffed giraffe, which was so, so sweet!  And they gave me a t-shirt.  It was a great experience, really.

After I left the room, they breaked for a few minutes and a bunch of people came out to give me a hug or meet me.  It was so awesome.  The owner said, "You could hear a pin drop in there, they were hanging on your every word!"  I heard a lot of thank yous and such.  It was so great.

And I felt SO much better.  On the way home, Jamie told me that Harlie accidentally hit her toy she was holding (our neighbor, Adam, gave Cooper a large-ish tow truck that she has claimed as her own and she wanted to take it with her, so I let her).  Anyway, the truck made some noises and Jamie said that Harlie was like, oops!  and tried to find the speaker part to cover it to quiet it.  What an amazing thing when a child can see that the room is quiet and she should be, too.  Seriously.  I am so darn proud of her!

I should have gotten some pictures, but I didn't think about it at the time.  Darn it.

Anyway, that was it.

Now, today is the last day of school for Murphy.  Harlie's "school" will continue.  She is enrolled in summer school and her teacher will continue to come here for that.  And I have arranged for more teachers to come this summer, too.  She will technically be in second grade next year.  But, I feel like the lines are getting all fuzzy and it's pretty hard to think of her academic future.  As I see all the fun pictures of kids enjoying the end of school on Facebook, it definitely makes me sad that she misses out on so many of those normal experiences.  But I have to stay focused on the fact that she is doing great and maturing and saying something new every day.

Just the other day, we were walking the dog and she pointed to the sky and said and signed something.  Of course my mind went to all the normal things you might see in the sky.  And whatever she was saying and signing didn't match.  I finally had to stop the stroller and I asked her to sign it again.  I had to disconnect my mind from her pointing to the sky and focus on the sign alone.  She was signing "elephant."  Ahhh... so I said, "Harlie, are you telling me that cloud looks like an elephant?"  She said, "yes."

How many things does she think, but can't get out of that mind of hers?  And how many things do I not understand?

And just a second ago, Jamie came in to ask me how many times I've exclaimed, "That's it!" when I'm upset with the kids.  I answered, "thousands, of course."  And she told me that Harlie kept on telling Cooper to "stop it!" when she finally said, "That's it!"

I enjoy every single moment of these new verbal outbursts.  Every. Single. One.

Happy Summer Friends! And God Speed.  I'm not sure how we're going to survive, but I'm pretty sure we will.

Thanks!
Christy xo

Friday, June 6, 2014

The last month...

I know.  I've been absent again.  I have just not been "myself" lately, and it's hard to want to blog when you don't feel like yourself.

I have so much good to say about the We Heart Harlie and Friends event and the Deep Run Marathon Dance, but I am seriously lacking the energy to pull myself out of this funk for that right now.  Soon, I hope.

The real reason I'm writing right now is because I ran into two friends today who asked what's been going on.  And they both said that they want to know, even if it's not good.  So, thanks for that Katie and Stacy, this is for you!

The last two weeks have been an adjustment around here.  Cooper had swimming lessons each day and Murphy's swim team practice started.  Thank goodness my dear friend Bethany and I signed our boys up for the same sessions.  We took turns driving them there, which was a life saver.  The first week of adding those appointments on my calendar were complicated by Harlie having a.... fever!  Yes, the girl who never  rarely has a fever, had one.   So, that was a little freaky.  After seeing some hellacious infections not give her a fever, it makes you wonder what's brewing that does give her one!  We waited it out and didn't even take her to the doctor.  She's fine now.

Anyway, her being sick meant I couldn't take her to the pool for Murphy's swim practice.  Our nurse leaves earlier in the afternoon, so I don't have coverage then.  So, I called my Mom.  She received her first round of chemo last month, and was feeling better and up to coming over.  I had just seen her the night before at my nephew's senior soccer game.  But, she was wearing a hat, so I didn't notice.  I knew she was going to lose her hair, I just didn't realize it would happen so fast.  So, I guess that sort of caught me off guard.  Makes everything more real, I guess.  We had not told Murphy anything yet.  And when he saw her he said, "Nana, did you get a haircut?"  Ugh.  So, when Tom got home we told him that Nana is going through chemo for cancer.  Odds are that she'll be okay.  The cancer got into some lymph nodes, so the chemo will hopefully catch any that sneaked by.  She is in great spirits for the most part.  I know where I got my positive outlook from.
 

Here is my Mom and I on May 10th.  Her and my Dad came over for dinner to celebrate her birthday (the 9th), Mother's Day (the 11th) and Murphy's birthday (the 11th).  This was taken before she started to lose her hair.

Whew, I feel like this story is just getting longer and longer...  I guess that's what happens when you don't write for so long.

Anyway, thankfully my Mom helped me out that first week of practice so I could take Murphy to the pool and leave Harlie here with her.

The next week my Mom received her second round of chemo, so she really wasn't feeling well then.  I think she's starting to bounce back some now.

Harlie got better, too.  I don't know what she had, but it went away.  Although the next week brought another ailment her way.  For some reason (still unknown) she started coughing up blood from her trach.  This started right as Memorial Day weekend got underway, so no doc to take her to except the ER.  She really seemed fine.  So, I let it go.  After a few days it started to get better and each day we saw less and less blood.  She seems all good now.

But when we went to refill one of her breathing treatment meds, we found out that Medicaid no longer covers one of her meds.  In looking to replace it with something that they do cover, her docs put her on Albuterol.  Since that raises the heart rate, they wanted me to monitor her heart rate during treatment to make sure she was okay.  This made us realize that her heart rate is a lot slower than I thought.  I always remember it being in the high 80s.  Well during the treatment it stayed at 60 (or just above) the whole time.  Harlie's pacemaker is set to keep her above 50 beats per minute at night while she sleeps and 60 beats per minute during the day when she's awake.  I suppose this means that her heart rate is now slower than 60 bpm, which is causing her pacemaker to fire.  Apparently more often than I realized.  She will get her pacemaker checked at the end of June.  So, I'll have more data then.  And even though this may be "normal" for her heart, it still makes mine hurt a little.  I know she has a pacemaker for this reason exactly.  I just don't like the idea that her heart needs more help than it was getting.  Especially since this feels like a new change.  And she's seven.  Just more reminders....

Anyway, here's the last month in pictures...

May 11 - Mother's Day

I started the day out with a great run with friends.


And when we got back some of the dads had set up some goodies - mimosas!

Thanks Glen!
And food!

Thanks to all who supplied the yummy food!
Then I went home and got the family and we went to lunch.  Not only was it Mother's Day, it was this guy's 10th birthday!

Me and Murphy
Hard to believe he's TEN!!!  Here's what he looked like ten years ago...

5 weeks early, 5 pounds, 10 ounces
He was such a little sweetie.  Still is, for the most part.
After lunch we went to Belle Isle.  I love going there because we can take Rooney.  It has become our Mother's Day tradition.

Yes, sometimes Rooney likes to take advantage of the stroller.

Murphy - TEN years old!




One of my favorite family pics!
The next week, some kids I know really wanted their toe nails painted...



So, I painted them.  No crummy comments (or thoughts), please.  Later in the week when the polish was wearing off, I took Cooper's off with some polish remover.  Cooper looked at me in amazement and said, "Is that how you erase it?"  He's so funny.

Pediatric Connection is the company that provides our nursing and medical supplies and equipment for Harlie.  They wanted to get some pictures of some of their clients, so we went there for a quick photo shoot.  She was a ham.


Have you ever seen the movie Milo and Otis?  If you have, then you will probably understand why I thought it was hysterical when I walked in the room and found the two of them hanging out with this stuffed sea turtle.




What are the odds?

The other day this adorable neighbor said, "Here's your dog."


He is a very social pup and likes to make the rounds to all our neighbor's houses.  And if he sees the door open, he will gladly go in and do some vacuuming in the kitchen!

Tom and I went to a wedding... and he wore a bow tie!


Niki and I
Another pic of Rooney, just because I love him so...


Cooper had his LAST day of preschool.  Yes, he will start kindergarten in the fall.




Our kind neighbors let Tom borrow his Harley for a little ride.


Our Harlie loved it.



So cute!

One night, Tom and I were out at a bar celebrating a friend's Ironman achievement (Rick Tangard is awesome, by the way) and in walked my niece.  That was a first!

Me and Jordan
I started this post a week ago.  But I get so little time in front of my computer these days, I wasn't able to finish it.  Between swim team, working part-time, running, etc., it's been crazy.  But, after school is done (a week from tomorrow!) swim team meets in the mornings, which will be SO much better.  Right now it's from 5 to 6pm.  So, I have to take all three kids, plus all of Harlie's gear and oxygen and I have to watch her like a hawk. So, we haven't been getting home until 6:30ish, with three wet kids, no dinner and Tom's been working late.   I hate to sound like a wimp, but it's exhausting.

The first time I took Harlie to the pool was a little stressful.  I really felt like everyone there was staring at us.  And I'm sure that's not true.  Or, perhaps they were admiring how cute she is... regardless, I felt super self conscious and I just wanted to burst into tears.  In a weakness, I saw a friend and said to her, "Is it just me, or is everyone staring at us?"  And then I instantly regretted it.  It sounded really crappy.

But, we got through it.  And it was fine.  I'm sure that with more practice, I will get better at handling things and people will get used to seeing the oxygen tubing in the pool.


She is a lot of work at the pool.  But, she's worth it.  She really loves it.  Since she needs a float with a built in seat, we use two infant floats.  She's seven.  I guess we're really lucky that she's so small for her age.  We really go through some small oxygen tanks, though.  With her kicking her legs, I have to up the flow to keep her sats up.

Thank goodness for "adult swim" times!




Cooper had his last soccer game of the season.  Woohoo!



Tom and I went to my niece's (Jordan) college graduation party and my nephew's (Cutter) high school graduation party (they are siblings).  Then we left there to go to a wedding reception.

Tom and I

Allison and I
And, I decided to make another go for the Richmond marathon in November, along with these other crazies.

Keenan, Wendy, Natalie, Michelle, Molly, me, Aimee
I know, I'm nuts.  And, honestly, I'm not even sure I can pull it off.  But, I suppose you'll never know if you don't try.  So, I'm going to go as long as I can go.  My main concern is overall fatigue that impacts my ability to handle my life at home.  If that happens, I will back off and switch to the half.  And I will have no shame.  I no longer compare my time with other's.  Any day I can run is a good day, no matter what my time is.  And that's good enough for me!

Oh, and here's one more photo of the dog.

Look Mom!  Rooney's an astronaut!
So, that's what's been going on here.  Please send my Mom some good vibes for her chemo treatments.  This last one was a tough one.  She is going to take a little longer in between to give her a little more time of feeling good.  So, hopefully that will help her fight the next one better.

And things with Harlie are status quo for now.  Which, is a good thing.  It feels a little weird, though.  I feel like I'm dropping the ball somewhere.  So, I decided to work on getting her an appointment at a hospital that specializes in heart/lung transplants.  I don't like not knowing where we are.  I'd rather hear whatever they say, than sit here, not hearing anything at all.  The unknown seems scarier.  My imagination can take me to places I don't want to go.  So, I'll update you on that as it progresses.  I have a feeling it's not something that will happen soon, though.

More later (I hope!).

Much love,
Christy xo

Saturday, May 10, 2014

The Latest on her Lungs

I have so much I want to share!  Here's what I want to blog about:

1.  Deep Run Marathon Dance
2.  Spring Break
3.  We Heart Harlie and Friends Event
4.  Harlie's lung update

The first three items are all good stuff.  So, I'm thinking I should get the lung update out of the way first.  I've actually been dreading writing about it.  So, here goes...

The last I updated about her lungs was when I said that the doctor had left me a message on Friday, March 28th that there was nothing easy to fix in her lungs (no abnormal vessels) that was causing her oxygen requirement.  He called me again on Monday night.  He said that the CT scan of her lungs showed that she doesn't have enough alveoli in her right lung to produce enough oxygen to support her.  

And, in case you are wondering, there's no way to give her more alveoli.  What she has is what she has.  And in all likelihood, it will not get better.  In fact, it will mostly likely get worse.

What caused this, I don't know.  Her right lung was never good, even from the start.  That was the first thing we learned at 16 weeks pregnant.  At 11 months old, they took out two lobes and left one.  Her doctors at that time told me that lungs grow, and that the single lobe could get bigger over time.  Which, it did.  But, it never grew more alveoli.  Or maybe it did and over time and many, many surgeries, anesthesia, pneumonia, and/or collapsed lungs later, damage was caused to what was there.  I don't know.  It doesn't matter anyway.  She doesn't have enough and that's that.

What does this mean?

Well, it means that she NEEDS oxygen.  And will likely need it until something changes.  I say that because I really don't want to say "forever."  Which I think is probably the case.  No one will say that anyway.  The fact is that no one knows what will happen.  Here's how I think about it...

Her lungs gave her six years on room air.  Okay, that's not totally true.  Her first full year she needed oxygen, too, but that was for a different reason, sort of.  That was because the mass in her chest was pressing on her good lung.  She was able to come off oxygen after she fully recovered from her lobectomy (removal of her two lobes).

Anyway, the day after Christmas 2012, she got sick.  We've always had oxygen because whenever she had a respiratory bug, she needed the support.  With only three lobes (instead of five) she had no reserve.  Any hit to her lungs was noticed.

She's been on oxygen ever since.

So, to go back to my thought process - these lungs carried her six years with intermittent support.

Just SIX years!  That is not very long.  What does that mean for her future?  How much longer will they carry her?

She's 46 pounds now.  What happens when she's bigger?  Will they be able to support her then?
And if she had "no reserve" before, what does she have now???

Back a few months ago, her cardiologist and I had a few conversations about possibly removing the right lung entirely.  After her docs had the CT scan results, that idea was scratched.  Basically, if her left lung is doing 85% of the work and her right lung is doing 15%, she still needs the 15%.  She can't live on just the 85%.

And I agree with that logic.  Back in the summer when she had her jaw distraction surgery in Boston, her right lung either collapsed or had pneumonia (looks the same on an x-ray) and she needed breathing support from a ventilator to get her through that.  I know what she looked like before they put her on the ventilator.  She slept for several days straight (and that is not how a normal recovery goes) and when we put her flat on her back, she could barely breathe at all.  It was scary.  And that was her on her one, good lung.  No way could she live like that.  Here is the post about that experience.

So, will her right lung stay at 15%?  For how long?  Was it at 40% a few years ago, then at 30%, and it's now at 15%?  Because if that's the case, the trajectory isn't good.  We can't afford for that lung to decrease in output.

And in this post, I said,

2.  Can she have a lung transplant?  No.  A lung transplant is trading one disease for another.  It isn't a cure - ever.  And it only buys you time.  Like five years.  If we have to consider a lung transplant, we will be very sad people.  That is a terrible position to be in.  I really can't think about it. 

So, will we have to consider a lung transplant?  It seems that it's that or... what?

I think it's safe to say that it's not likely these lungs will last her for as long as we would like.  All risks are increased now.  A sickness could go the wrong way.  Another bout of pneumonia, or atelectasis (collapsed lung) from a prolonged time on anesthesia, could do more damage.  That damage could change that 15% output to 10%.  Or maybe just her growth and time could put a toll on her lungs.  I don't know.

Honestly, putting it bluntly, I think the best case scenario (other than some miraculous change or staying status quo forever) is one in which a transplant is an option.

Worst case is that her lung continues to decline, and we are told that she is not a candidate at all, there's nothing we can do and we watch her deteriorate.  This is my worst fear.

So, I suppose I need to revise the above sentence, "If we have to consider a lung transplant, we will be very sad people."  And change it to read, "I pray to God that if/when her lungs can no longer sustain her and her quality of life deteriorates, we will be lucky enough to have the option of considering a transplant."

As I told her cardiologist on the phone, "Well, this sucks."  To which he replied, "Yes.  Yes, it does."

And then I said, "This is going to be very hard for me because I've worked so hard to make things better for her."  Then he said, "And you have."  But I can't make this better.

And then I started crying.  Which I totally HATE to do.  But, I couldn't help it.  I was heartbroken, still am actually.  I don't want this to be true.  I quickly got off the phone and I couldn't leave my room.  It was awful.  I don't think I've felt that devastated since I was pregnant and they sat us down in that conference room at Children's National Medical Center and told us about her heart defects.  Hard to believe that next month marks eight years since that day.

I would never have guessed then, based on what all the doctors were telling us, that we would be here, with her, loving her still, eight years later.

So, I know to have hope.  I know that no one knows what will happen.  But, I also know that this new reality... isn't great.

After she was born and she was here, we just tackled each problem as it arose.  While we certainly had some scary moments, nothing seemed insurmountable.  And I really believed, with all my heart, that one day we would get to a place of rest.  A place where all major obstacles would be behind us.  The trach would be out.  And she would be able to go get frozen yogurt with her friends, and eat it, by mouth.  (Even in my daydream I knew eating pizza might be reaching too far.)

I guess I was in denial.  I suppose I had to be, to get through all the crap we've had to get through.  I had to hope that there was something good for her at the end.

So, now what?  What am I supposed to do now?  For the first time in a very long time, I feel like we've hit a wall.

Which reminds me of something from the Nike Women's Half Marathon I ran on April 28th.  One supporter was holding a sign that read, "It's not a wall, it's a door.  Push through it."

As soon as I read it, I had to hold back the tears.  If only my inner strength could push us through this wall.  If only my inner strength could make things be different...

So, this is where we are now.  I've been trying really hard not to think about it.  Which is why I waited so long to write this post.  I just didn't feel like facing it.  I still don't, really.  But you can't hide forever.

A couple of other things that this new lung diagnosis (if you will) means for her and for us:

Trach.  Since she will remain on oxygen (forever?) this drastically reduces the chances of her being decannulated (getting the trach out).  This has been a dream of ours since literally Day 1 of her life when we were told she needed one to live.  I never thought keeping the trach forever would be a possibility.  And after ALL we've done to give her a good airway...  it's indescribable.  Can't even put into words how I feel about this.

School.  Will she ever go back to school?  Nothing has changed since I put her on home bound services.  She still needs oxygen.  And what if she gets sick?  Is it worth the risk?

So, where do we go from here?

I don't know.  I definitely feel like we are in a completely different place.  I have to accept some new challenges and I suppose it's time I accept some that have always been there.  I have a dear friend who suggested that I look into a palliative care program for Harlie.  Palliative care isn't just for the dying.  It's also for those living with life limiting conditions.  So, I did.
I spoke with someone last week.  She said, "First, we need to see if you qualify."  Then she asked me a bunch of questions.  Then she said, "Okay, so you qualify."  She understood that this changes everything - our direction, our decisions, our outlook on everything.

The bottom line is that I want her to have the best life possible for as long as possible.

And she gets that, of course.  She said she was going to do some research for me.  And she was going to help me figure out the whole transplant thing.  Where would we take her - Boston or Philadelphia?  When do you start that process - sooner or later?  I know we aren't there yet.  But does it help at all if a team meets her sooner?  Would we be looking at a heart/lung transplant or just lung?  I don't know.  I think part of me just wants something to do - to be working towards a bigger goal.  I still want to make things better for her.  I don't know how to do nothing, to just sit and wait.

I'm having a hard time, in general, with all of this.  There are a lot of things to be sad about.  After talking with her docs back in the beginning of April, I had a hard time just getting through the day without crying.  Every time I looked at Harlie and she smiled, my heart broke a little more.  As sad as I was (and still am) I know that I cannot allow myself to miss out on the here and now because I'm sad about what might become.

And I have to look at how Harlie is now.  Today she is happy and well.  She is learning something every day.  And every day I am learning something new about what she knows.

Just the other night, Tom told the kids it was bedtime and Harlie signed and verbalized, "Ten minutes."  I couldn't believe it.  That was the first time she's ever asked for more time.  First. Time. Ever.  When I told her teacher about it the next day, she said that they have been doing that in "class."  For example, "Harlie, you have three more minutes and then we have to do something else."  So, she's taking what she's learning in school and applying it to real life.  YAY!

Most of the time, I'm okay.  But there are certainly moments (like the one during the half marathon) that catch me off guard.  And like Murphy's fourth grade recorder concert last week.  The kids were singing and I found myself thinking about Harlie and how she can't do that, too.  And then I was mad at myself for being sad about her when I should be focusing on Murphy.  Then the music teacher said that she tells her students to "dream big, because you never know, one of these students could find the cure for cancer."  And I thought about how different my dreams are for Harlie.  I can't tell her that she can do whatever she puts her mind to.  And my "big dreams" are for her to live, for as long as possible.  For her to be happy while she's doing it.  And for her to be able to go get frozen yogurt with friends one day.  And while I'm so grateful for all she can do, I can't escape my sadness for all that she's lost.  Even at a fourth grade concert for my son.

Anyway, that's the update on her lungs.  Since it was a crummy post, I'm going to end with some pictures.

Harlie loving Rooney.

Just because Rooney's so great.

See the abuse he tolerates from her?

I wonder where Harlie is hiding.

Oh!  There she is!  I had no idea.
I walked into her room last night to find her changing her baby's diaper.  This is a new development.  And it's a really cute one.  She actually holds her nose and says the old one is a "stinky diaper."


 

The other night Harlie was playing with her baby, putting her in a baby carrier on her back.  She proudly left the room and Murphy said, "Harlie's going to make a great mom one day!"  And it took all I had not to cry.  Oh, the things he doesn't know or understand...

Me and Murphy after his concert.

Rooney sporting his new raincoat.
Seriously, this dog gets me through some tough times.
As always, thank you for your support.  I'll have better posts soon.

Much love,
Christy xo