Wednesday, January 29, 2014

Arizona

Another long silence...  In my defense, the kids have only had ONE school day since January 17th!  Crazy snow days.  I wish I could say I've been having fun with the kids.  But I would be lying.  Honestly, I don't have a lot of energy left over for "fun" with the kids.  And the boys want to go out and play and Harlie doesn't (and probably shouldn't).

Here are the photos I took during the brief eight minute span that Harlie spent outside during our first snow last week.  Seriously, eight minutes and she was done.  I could barely get her to stay still for the last photo.

Cooper

Cooper "sledding" down our driveway.

Rooney.  He eats the snow.

Cooper, Harlie and Murphy.

Yes, the kids were out of school for FOUR days for this snow "storm."  You can still see the grass!  Too funny.

We got more snow last night (Tuesday) and they were out today and they are going to be out tomorrow.  All the excitement of snow days are gone.  When I told Murphy he was like, "Oh, okay."  The first night we were like, "Hey! Guess what you guys have tomorrow...." asked in an excited, high pitched, tone of voice.  Now it's, "Hey, no school again tomorrow."  Told in a monotone, someone kill me now, tone of voice.

I have more updates on our day to day life I still need to write about.  I've been struggling with what to do with Harlie, medically speaking and what to do with her schooling.  But I think I am finally getting somewhere.  I'll have to save that for another post.

I started working a part-time job.  And trust me when I say PART TIME.  I am taking that term to a whole new level.  Especially with all of these freaking snow days.  Luckily, my boss is very flexible and understanding.  Thanks Bill! (He's Bill Jeffries, who is the creator of The Harlie Crew you see on the left side of my blog.)



But, for now I want to write about my trip to Arizona to see my friend, Ann and attend Jack's celebration of life service.

I left on Thursday the 16th.  Somehow we managed to all arrive around the same time.  I met my friends Sarah and Susan (from the pictures from my last post) at the airport.  We rented a car and drove to Ann's house.  I've seen pictures of her house on her blog for years.  So, I felt comfortable in her home instantly.  We all went to lunch, including another friend of Ann's (Erin) who lives there.  Coincidentally, Erin's daughter had a trach in the past (I think that's how they met).  After our late lunch, we hung out at Ann's house in the backyard by the fire.  We got to spend a lot of good, quality time together, which was great.  Then we (Susan, Sarah and I) went and checked in our hotel.

It's a little bit of a challenge to get used to the time change.  So, I woke up earlier than the girls.  So I went for a run.  I was a little nervous because I only packed a pair of running shorts, a tank and a visor.  When I looked at the weather from home it seemed like it was in the 70s during the day and cold at night.  Well, I checked the weather on my phone and it said 36!  Ugh!  But, once I got out there in the sun, it really was great.  It was perfect running weather.  Despite traveling the day before and drinking the night before, I had a great four mile run!  Even though it was a day early, that was my run for Meg Menzies.  Jack's service was on Saturday, so I knew I couldn't run that day.


My scenery during my run in Chandler, Arizona.  
On Friday afternoon there was a memorial hike for Jack.  We got brunch and hung out until it was time for the hike.

Sarah, Susan and me.

Then we hit the trail.







We stopped for a break here and got in a circle.  We took turns telling each other who we were, how we knew Ann and Jack, and shared some thoughts or memories of Jack.


It was an emotional time for all of us.  Pretty amazing to hear how much Jack affected those who knew him and even those who didn't.  There aren't a lot of people in this world that can say that they never walked, talked or moved purposefully, yet did so much for so many people.  I felt so honored to be there and to have Jack in my heart.





The scenery was beautiful.  Pictures just don't do it justice.  Especially when I'm taking them.  Sarah took the sunset one.  Not me.

After the hike, we went to Erin's parents house where they hosted a wonderful mexican dinner for all of us.  Their house is gorgeous and has a beautiful backyard with a pool.  It is the perfect entertaining house!  I wish I had taken some pictures!  Ugh.  Anyway, someone at least got this picture.

Standing: Whitney, Sandra and Ann.
Sitting:  Me, Sarah, Pat (Erin's mom), Erin, Susan and Carrie
All of us (except Pat) have or had a trached child.  And me, Sarah and Susan are the only ones whose children are still trached.  I can't tell you how awesome it was to be surrounded by trach moms.  We were instant friends, or as Ann affectionately refers to us, sorority sisters.

Saturday was Jack's celebration of life.  It was difficult, and beautiful.  One thing I've learned about me is that I am not really good in serious, somber situations.  I seek out humor to get me through.  And sometimes that can appear as inappropriate from someone who doesn't know me.  Once we sat down, I was a little overcome with emotion and to seek humor (albeit in a sick way) I said to Sarah, "When it's my turn, I want you to come."  And then Sarah started to cry.  I told her I was sorry, I didn't mean to make her cry.  She said it's sad that I have to have those thoughts.  (But, when you're told that your unborn child has a 5% chance of survival, has heart defects, lung defects and airway issues, it's unavoidable.)  Then she told me she would play the piano and sing.  And I said, "Thanks!  That would be awesome!"  And we both smiled.  

I know that sounds totally weird.  But, that's just the way things are when you live a weird life.  I really just try to go with the flow, you know?

The service was really beautiful - as far as those things go.  And it was definitely difficult for a lot of us.  Clearly, I can visualize myself in Ann's shoes.  And that didn't help.  I think it's safe to say that most cried on and off throughout.

A lot of people spoke and they all did a great job.  Jack's sister spoke and was funny and adorable and so sad at the same time.  I think a couple of his cousins spoke and they did a great job, too.  One of Jack's doctor's from years ago came to attend the service from Los Angeles. He spoke as well.  As the parent of a special needs child who sees a lot of docs often, I was appreciative of him caring enough about Jack and Ann to be there.  Some of these docs mean a lot to us and our kids.  And we can get attached.  I love that he felt the same way towards them.  And Ann and Mark spoke. I have so much admiration for them.  They did great and wrote beautiful pieces.

Ann had stones for us to take to remind us of Jack.


I took an "Onward" one.

After the service, we walked to the graveside service.  I was okay until I saw them hold his ashes.  I couldn't take it anymore.  And I wasn't alone.  It was such a heartbreaking sight.  It's so not right.

At the end of that service we sang When Irish Eyes are Smiling.  And I got to hear Sarah sing - and she has a beautiful voice!

After that, we went back to Ann's house for a reception.  Is that what you call it?  Anyway, they had great food and a wonderful set up in the backyard with heaters.  It gets cold there at night!  But I love how they still sit outside.  It's great.


We ended up eating two meals there and hanging out, talking, laughing and enjoying our time together.  What a wonderful group of trach moms!!!

Sorority Sisters.
From left to right: Sandra (Texas), Whitney (Colorado),
Erin (Arizona), me (Virginia), Ann,
Carrie (New Jersey), Sarah (California),
Jenny (Missouri) and Susan (Washington).
Ann is amazing and I think it's obvious how much she means to all of us.  Every single person in that picture will tell you that she was instrumental in our survival of this life as a trach mom.  What a gift to all of us.

The next day, Sunday, Ann had brunch for all of us who traveled from out of town.  I meant it when I said we got some good, quality time together.  Ann's family did an awesome job with the food - it was all so good!  And it was a beautiful spread, too!  We really felt special being there.

Then we gave Ann a break from us.  A few of us went back to our room and hung out.  We had the Patriots vs. Denver game on and I got to watch the Patriots lose.  Awesome.

By dinner most had left to go back home.  So it was just me, Susan, Sarah and Jenny.  We went to dinner and got these in our fortune cookies.  I can't remember what Susan's was.

Sarah's, for Jack, of course.

Weird, considering I was about to take a flight East!

This was Jenny's - and she had never
met the three of us before this trip.  
Weird.  

Then we went back to Ann's to have one last drink, and say goodbye.  :-(

Then Sarah and Susan drove me back to the airport (my flight was at 11:45pm).  And we had to say goodbye.  :-(


So sad.  

Despite the difficulty of the situation, it was wonderful to spend time together and meet more of our "sorority sisters."  Good people.  Wonderful friends.  I'm truly blessed.  

Much love,
Christy xo

Tuesday, January 14, 2014

Ann and Jack

I don't remember if I ever blogged about my trip to Coronado Island back in October.  I met three wonderful friends in San Diego and we had a fabulous weekend at the Hotel Del.  It was awesome.

All three of these friends I have known for years... but had never met in person.  All of us have trached children and met when we all belonged to a trach support group online.  Ann lives in Arizona, Sarah in California and Susan in Washington.  Seeing them standing in front of me after all these years was absolutely wonderful.  Susan wrote about the weekend here.  You should look at it - her pics are way better.  And she wrote all about it, whereas I'm not going to be able to today.


Susan, Sarah, Ann and me.






Sarah, Ann, Susan and me.


What I really want to talk about is Jack and his mom, Ann.  Jack passed away last Sunday.  Every time I have tried to write about this, I just come up short.  I just don't feel like I can do them any justice.

I joined the trach board in early 2007, just four or five months after Harlie was born.  That trach board was my only contact with other moms who were like me.  And who had babies like mine.  Moms who were scared, sad, overwhelmed and quite frankly, out of our leagues (and often times, out of our minds!).  But they didn't just vent about all that stuff.  They asked questions about equipment, supplies, how to give a baby with a trach a bath, what that irritation was around a g-tube, etc.  And the more experienced moms answered, shared their wisdom and tricks.  And they got us through the most difficult years of our lives.  Ann was one of those moms to me.  

I remember liking and/or agreeing with every single thing Ann ever commented or posted.  I knew instantly that this woman knew her shit.  And I liked her.  Over the past six years I've gotten to know her, Jack and the rest of her family well.

Jack was 15 and had a rare form of congenital muscular dystrophy.  I just want to share one paragraph from his obituary written by Ann...

Despite being born with a rare form of congenital muscular dystrophy that stole so much from him, Jack radiated love every day of his life. Our beautiful son, who could not purposefully move his body; who could not sustain his breathing without the assistance of a machine; who never enjoyed the experience of eating food; and who never spoke the words his mind so clearly held, woke up every morning with a smile on his face and eyes that sparkled with the anticipation of a new day. Jack faced the hardships of this life with unprecedented joy and grace and he challenged all of us to do the same. 

You can read it in full here.

On top of having a career as an attorney, having four children, one with complex medical needs, she started the Willow Tree Foundation and Touchstones of Compassionate Care.  And she blogs.  Seriously, I don't know how she does so much.

Here is a link to a wonderful video she did for her "Dear Future Physician" project.

She's an amazing person and I feel so lucky to know her and to be able to call her my friend.  I wish I could have met Jack in person, too.  But, as weird as it may sound to some, I really feel like I knew him.  I feel like he was a part of my life.  And I miss him.  And I can't stop thinking about Ann, Mark, Hilary, Mary and Eric, as they adjust to their lives without him.  We all try to put off the inevitable, death.  Some of us just have to work a whole lot harder than others.  Ann and Jack fought the good fight for 15 years.  We've been fighting for seven.  I know what the last seven years have done to me.  I know what they've done to Harlie.  Ann and Jack are my heros.  Every day is a bonus.  And every day you hope to have one more.

For all you gave, selflessly, with grace, honesty and humor.  And for keeping it real.  Thank you, Ann.  Thank you, Jack.

Much love,
Christy xo

Sunday, January 12, 2014

Harlie Update and fantastic news!

It has been so long since my last post.  I am going to write some updates, and post them as I finish.  They will likely be in random order, based on what I feel like writing about first.

Harlie Update

She's been on home bound schooling since the week before Thanksgiving.  It has definitely been a nice change for us.  But, at some point, I am going to have to send her back.  I was so hoping to send her back with NO oxygen.  But, that isn't to be right now.  When I ordered her monthly supplies last week, I had to make sure I replaced all the empty oxygen tanks so we would be ready for that again.  Ugh.

As far as when to send her back... as things stand now, we are supposed to see a pulmonologist at Children's National in DC.  We are waiting on that date now, but am told it should be within the next two weeks.  Her docs there (cardiologist, ENT, pulmonologist and her social worker) have been emailing back and forth to come up with a plan.  Once we meet with this pulmonologist (who we have not met yet) he will go over some things with me and determine if he thinks a sleep study is warranted.

To recap why they were talking about doing a sleep study.... One cause of higher pressures in the Fontan (her heart circulation, sort of) is a higher level of carbon dioxide (CO2) in the blood.  A cause of higher CO2 can be sleep apnea.  They would like to rule out sleep apnea before they start treating her with medication.  But, given that she already has a trach, I am thinking obstructive sleep apnea isn't likely (since the trach prevents anything from obstructing her airway).  Since she sleeps with a pulse ox (which indicates the patient's heart rate and the amount of oxygen in the blood) I am doubting she stops breathing at night, which would indicate central sleep apnea.  I would have thought by now that we would have seen her desat while sleeping.  But, who knows?

Anyway, I guess her ENT and the pulm must have talked about this because now we are to meet with him and then he will decide if she needs a sleep study.  I'm grateful they really want to think this through before putting her (and me) through a sleep study.  Given Harlie's opposition and great dislike to anything sticky, the probes that they put in their hair (or on their head) would be torture.  But, if it's warranted, then we will get through it.  And they have spoken with the director of the sleep lab and will get her in asap if that's what they decide.

So, now I'm thinking of keeping her home until we have this appointment, so he can see her at her baseline best.

My gut tells me that in the long run, we won't get many answers.  This might just have to be something we accept as her new normal and we try meds, and wait and see if they work.  I am not looking forward to the wait and see game.  So far, she had a problem (or many of them), we figured out what was a priority, and we "fixed" it, or made it better or in some cases tried to make it better.

This is something we can't just fix.  Surgery isn't an option.  So, this is new territory for us.  And now I can see the effects of this pressure change - in her oxygen requirement and continuing clubbing fingers and toes.  Basically, the clubbing is due to prolonged oxygen deprivation aka low oxygen saturation her whole life.  Here are her toes...


I know it could be worse but it still kills me just the same.  I can see her heart defects when I see her fingers and toes and it makes my stomach hurt.  It is a constant reminder of what battle is going on inside her body.  And no one wants to see that.

Soon after her heart cath in mid-December we tried weaning her from the oxygen during the day.  She did okay, I guess for a few days.  She seemed to be in the low 80s and then in the high 70s.  A typical, healthy person is near 100.  One day I noticed that I couldn't get all her food in her that day.  It just seemed that every time I went to tube her a feeding, she had a lot of residuals (formula was still in her stomach from the last feeding) and complained of feeling full all day.  You can't force it in, so she didn't get all four cans.  Then Brandy told me the same thing after she was with her all day.  This happened for several days in a row.  This could be a sign of poor perfusion to her stomach due to the low oxygen saturation levels.  Basically the body is sending oxygen to the most important organs.  Once that happened, I put her back on oxygen and haven't taken her off again.  It's not worth that.

So, what if we can't stop the pressures from getting higher?  What if meds don't work?  What then?  Waiting for those answers aren't going to be easy.  I know this has happened to other kids and the outcome wasn't good.  It's just hard, living with this kind of worry.  I am trying very hard to focus on the positive.  She's happy and seemingly unaware of anything amiss inside her body.  She willingly wears the oxygen and doesn't complain.  We give her little breaks - like to take a bath.  I think she could probably tolerate a quick trip somewhere without it (like to Target or something).  But, at this point, the worry I have about something happening (car accident, me running into a friend and talking for an extra 15 minutes, a sudden change with her, etc.) makes it not worth it.  I would rather her have it when she needs it.

She has shown a crazy sudden interest in food.  She even asked to eat once.  Tom gave her some yogurt and she took a few bites all on her own - holding the spoon herself, with no reward other than a "Good job, Harlie!"

video

She wants to watch Tom cook and she wants to stir it, or put the salt and pepper on it.  We let her and Tom tells her what everything is as he is making dinner.  "This is celery, Harlie."  She's also been tasting stuff with her finger - like syrup, butter, salt, sugar, etc.  And we've been telling her if it tastes sweet or salty (since those are things she's never experienced and likely didn't even know the language).

So, that's where we are with her.  Plugging along one day at a time.  Focusing on the haves instead of the have nots.

And to end with a FABULOUS piece of news... My dear friend Lynda (founder and organizer of We Heart Harlie) applied to be a beneficiary of the Deep Run High School Marathon Dance.  Every year the high school students organize this event and raise money for 12 local organizations.  Last year they raised just under $245,000!  Isn't that amazing?  Well, right before Harlie's heart cath last month they had an event at the bowling alley with all the applicants.  Groups of students on the committee went around and spoke with each applicant's group to get to know them better.  Lynda and I talked for over two straight hours.  Harlie was there and thank goodness I had Brandy with us, because I could never have been able to speak without her there.  Anyway, it was emotionally exhausting talking about Harlie and the past seven years to so many people in one night!

Well, we just found out that We Heart Harlie was selected to be a recipient this year!  Can you believe it?  We are more thrilled, blessed, lucky, etc. than words could say!  To see We Heart Harlie among the other organizations was surreal.  I will never be able to thank everyone enough.  Never.

Too grateful for words.

Much love,
Christy xo