Surgery #14

Today was another day of surgery.  When I say this is surgery #14, it's far from our 14th visit to the OR.  We're only counting actual surgeries and heart caths here - not scopes or other sedated procedures.  I actually have no idea how many times this girl has been under.  Wanna know how many times I've been under in all my (I'm not telling how many) years?  Once.  I've been under anesthesia once.

Anyhow, at home we're preparing for Ellie's big annual meeting for home care services.  We meet with the care manager for the Ohio Home Care Waiver... and with our nursing companies and hash out how Ellie's needs have changed and how her health status has progressed/regressed over the past year.  To get ready for this, I always spend a good bit of time compiling notes and medication orders and lists of appointments/hospital stays/ER trips and all that jazz.  We need all of this to determine her need for care moving forward.  I was pleasantly surprised as I compiled all of this over the past week.  Did you know that Ellie has only spent 13 nights in the hospital this year?  That's drastically lower than her past years.  And we've only made 15 trips to Dayton for additional appointments.  I know that for most people, they never spend 13 nights in a hospital room EVER... (me included)... but for Bug, that's a heck of a year.  Now, that doesn't mean that she wasn't sick or didn't have storms and seizures in our house... it doesn't mean that there were never days when she SHOULD have been in the hospital.  Part of the reason this last year has been so good to her is that when we do have emergencies or pretty nasty illnesses at home, we're well supported and able to deal with them with the staff and equipment we have on hand.  The fact that we have such competent people in our house everyday has much to do with our lessening need for ER trips and hospital stays.  I'm hoping that part of it is that Ellie's immune system is starting to catch up with her and is starting to toughen to the things she'll be exposed to.  I really hope this is a big part of her progress, too... especially since we're in the thick of cold and flu season and she's around other little kiddos every day.  These last three years we've hunkered down at home with her... not even taking her to church during the winter months.  Let's hope that she's getting stronger all the time and that she can tough through this season without too much difficulty.  Anyhow - I thought you'd like to hear all that good news before we start to go into how things are going for her today.

So today, Friday Oct. 19th:
We packed bags for everyone last night and brought bags for the boys over to my parents' house.  Buggy wasn't allowed to eat anything after her bedtime snack last night, but we pump her full of pedialite through the night to make sure they can set an IV today.  (This is the beauty of a g tube and a feed pump).  Ellie's notoriously a hard stick for IVs.  Flooding her with pedialite before surgeries has been our life saver in getting her ready for this.  One, a full belly of pedialyte makes her less crabby in the morning, and a well-hydrated baby is much easier to stick for the nurses.  Win-win!

So we arrived at Children's early this morning, lugging around enough baggage for a family vacation, and Ellie went back for surgery around 10am.  She was out of the OR after about an hour and a half.  They went in and removed some of the tissue build up in her airway and removed her lingual tonsils.  They did NOT need to do a tongue resection.  Whew!  She was slumped over sleeping when we met her up in TCU.  She clearly has episodes of pain and normalcy.  She watched Moana and Frozen, ate lunch & dinner and just polished off some ice cream.  The only concern so far came from the dietitian... she said Ellie's BMI has dropped and she wants to ensure that we bulk up the calories so that she stays on a healthy BMI curve.  Can I donate my extra weight??  Pick me, pick me.  The dietitian probably wasn't impressed with my casual reaction to her concern... but really, if this is all I have to worry about post-op, then I think it's safe to take a nap. 

We're supposed to do a capping trial tonight, but Ellie's oxygen saturation haven't been real pretty... so she's on supplemental oxygen... we'll see what they say.  As far as moving toward decannulation, her surgeon said, "slow and steady wins the race here".  Ellie's airway tends to collapse just above her stoma because the trachea puts pressure on it and weakens that tissue.  She may need reconstructive interventions here again... but we'll have to wait and see.  If her airway coninues to be too small after she heals from this surgery, we may have to wait until she gets bigger.  We're not holding our breath.  We're just thankful for a successful surgery and a happy baby.

Our boys are going on camping adventures tonight - yahoo!  Until next time, friends... thank you for following along and for all the messages of prayers & encouragement today.  Love y'all!!

After running around the pre-op room, we finally got her to sleep before she went back.

Not fully awake yet.

After lunch... standing up, throwing toys out of the crib with a mouthful of goldfish while watching movies.

This was Mookie yesterday after the Running Club awards.  I think he wore both of his Running Club medals to school today.

When I picked Kaleb up from preschool on Wednesday, we took this random photo before having a short mommy & me date.

Lucky #14?

After our whirlwind of a weekend, we’re settling back into our “normal”, bracing for the cold and flu season that is already upon us, but reveling in the amazing progress we’re seeing in each of our kiddos so far this school year.

Lance is now in first grade and while he has his bad days, his good days far outweigh the bad this year.  This is a welcome change from kindergarten.  We’ve found that if he can be a helper, his behavior is more in check.  On days when he gets to help another kid with math, he’s beaming after school.  At home, when he teaches Kaleb about the parts of a flower, or about planets, he’s calm and seems proud of the “purpose” he’s been given (plus, the nerdy science girl in me is stoked when they talk about photosynthesis and cloud formations).  While it’s sometimes hard to stay patient on bad days, and sometimes hard to empower him to find that purpose every day, I feel like we’re starting to see the kind of kid he WILL be… the kind of adult that might emerge from this spirited little boy.  I see someone who is a helper.  Someone with compassion and vast intelligence, but also someone with a fiery temper and impulsiveness that needs bridled.  Let’s see where that takes us and how we can build on that.  He just wrapped up his season of Runner’s Club and wants to take on basketball camp next.  Brandon and I are not the basketball type, but if that’s what he wants to try, by all means, kid… do it.

Mook with his Captain Underpants pumpkin

Finishing up one of his races... nice stride, kid!

Kaleb is well into his first year of daycare and pre-K at Shelby Hills.  Honestly, I thought that their daycare would be more of a babysitter before preschool.  Oh, how wrong I was!  The first week, he came home and told me all about China and about how he tried ginger tea and ate sushi with chopsticks.  Then they were off to Egypt and learning about pharaohs what a sarcophagus was.  WHOA!  He came home dressed for a mariachi band when they studied Mexico, told me all about the boat taxis in Venice on Italy week and brought home his own leaning tower of Pisa.  Then told me all about the deserts of Africa last week.  He’s a tiny world traveler and he loves to learn about other countries/continents.  This is all happening before he even starts his day at preschool.  I could not be more impressed.  Kaleb is going to try out for wrestling this week.  Brandon is thrilled.  I think this is a better fit for Kaleb than for Lance (Lance might get a little too rowdy).  I’m just hoping Kaleb doesn’t cry… he has already said he is going to tickle them… eeeek, this might be a wreck.  Kaleb has a more athletic build, so I wonder what his strengths will be.  He’s a gentle soul and is always updating me on who is friends are and how he “feels” each day.  Oh, how different these two boys are.

An African tribal mask

In Italy, you eat pasta.  Isn't this the cutest craft you've ever seen?

Kaleb made his pumpkin into Leonardo

My mariachi musician on the way home from school

And Ellie, crazy Ellie… she’s busy being destructive most days.  She seems to be getting bigger each day – seriously!  She’s a busy body and cannot be left unattended for any amount of time without coloring on the walls, climbing into the dishwasher (or stopping it mid-cycle), emptying out the bathroom cabinet, or decorating the living room with baby wipes.  She also finds random things to throw into the garbage and then “prizes” in the garbage she thinks need to be distributed throughout the house.  I’m not getting any new volunteers for babysitting with this talk, am I?  Ha!  She is learning more and more words each week and has loads of personality to spare.  When she’s around people, she waves and says, “Hi” to everyone.  If they don’t pay attention or don’t wave back, she leans in and waves harder.  She will NOT be ignored.  You go, Bugsy!  After a super cute 4-wheeling play time she had with her friend, Grant, I asked Mary (Grant’s mom) if it was totally unacceptable to arrange a marriage for them.  Ha!  In all seriousness, Grant and Ellie have taught their mommies so much and we look forward to many years of them playing together.  There are many other families that are in the thick of this with kiddos close to their ages, too… we seriously need to get play groups started.  All in good time, I’m sure.

If you didn’t already see Brandon’s post on this last week, we’ll need your prayers on Wednesday morning as we head to Columbus to speak in front of the Ohio House of Representatives on H.B. 332.  I had trouble reading the letter I wrote to Brandon, so I’m not sure how I’m going to keep it together in front of strangers.  Yes, I’m emotional… I’m well aware of this.  Anyhow – if you wanted a peek at the letter I’ll be reading to them, I have it attached below.

If that’s not enough excitement for us this week, Ellie will be heading back to the OR on Friday for surgery #14.  She’s having her lingual tonsil removed (until a few months ago I had no idea what a lingual tonsil was) and possibly part of the base of her tongue.  Gross, I know.  But they need to assess how much has to come out to allow her to breath during sleep.  Right now, her airway is much better than in was six months ago.  Removing her tonsils and adenoids made a big difference, but when she’s sleeping, her tongue still falls back and occludes her airway.  Let’s see what this next surgery reveals.  Are we on our way to finally having a Bandaids for Bugsy celebration?  I hope so.  We won’t know until she heals from surgery – it’ll be another two months or so before we can think about that. 

So on Wednesday, please pray that the Ohio House hears our story and votes for this anti-discrimination bill.  Organ transplant waitlists shouldn’t be denying people based on disabilities.  And on Friday, send more love and prayers our way as we again head into the OR.  And one more very important request:  we got a letter last week saying that Ellie’s pulmonologist passed away suddenly.  We’re heartbroken.  He was a wonderful man with a passion for helping children.  He actually had a trach himself when he was ill as a child and his experiences lead him to his profession.  He was a gentle, kind man who was calm and encouraging even in the midst of the craziest appointments.  Dr. Cohn’s family and co-workers have been heavy on my heart – can you join me in prayers for them as well?  I know that Team Ellie Bug specializes in prayer… I know our prayers are heard.  I know they’re powerful.  THANK YOU!

And of course, thank you to all of you who came out to support us at Walk Your Socks Off on Saturday.  We had a beautiful day and a great turn out.  We’re thankful for the opportunity to network with those in our community and to advance opportunities in our area for children and adults with Down syndrome.  We couldn’t do it without your support.  You’ll get a nice break from my constant posts promoting this event.  Come spring, we’re planning a craft beer & food truck rally in conjunction with a cornhole tournament.  Get excited about that, y’all!!

Until next time… much love from the Ward household.  Thank you for following along.  Please oblige our prayer requests above, and for the love of Pete, go out and spread some kindness today!  Have a wonderful week.

See photos below and my letter to the House.

Entertaining Bug, but with a back that had had enough.  

Thank you for being my muscle, hun.

Ellie and Gia at Walk Your Socks Off

 Being silly at Lance's race

Building the picnic table for the WYSO raffle.  Thanks, B!

Next project:  a matching one for me!!

My letter for H.B. 332

This is my letter that I wrote as our testimonial for House Bill 332:

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October 9, 2017

Chair Huffman, Vice-Chair Gavarone, Ranking Member Antonio, and Members of the Health Committee:

Thank you for allowing me to provide sponsor testimony on House Bill 332, which would ensure that individuals with disabilities will not be banned from an organ transplant waitlist solely based on their disability.

I was approached by Courtney Hansen after hearing of the proposal of Ohio House Bill 332 and wanted to share our story and put a face with the impact of this bill.  We found out that our unborn child would have Down syndrome in the spring of 2014.  Suddenly, the hopes and dreams I had for my child came crashing down around me.  I hadn’t had much interaction with anyone with Down syndrome in my personal life and honestly didn’t see past that diagnosis at all.  A month later, we found out that our daughter, Ellie, also had a severe heart defect that would require at least one open heart surgery to repair.  I knew from the day of our diagnosis that I’d have to become an advocate for our child – I had no idea that I would have to advocate to show the world that her life was worth living.

Ellie arrived that September and was out to show the world that impossible was nothing.  She was closely monitored from day one by her pediatrician and cardiologist.  When Ellie was just two weeks old, she went into heart failure.  At one month old, she was admitted for failure to thrive and congestive heart failure.  Her battle had begun – as did ours.  At two months old, we found out that Ellie’s heart defects were more complex than we’d imagined and we tossed around the idea of three surgeries now and a possible heart transplant in her future.  The next month brought a trach and g tube, several more tests, and a heart cath.  By Christmas, Ellie was spending her days in the Cardiac ICU and was only awake for a few hours each day.  She was in the depths of heart failure.  We prayed over her every night, begging her to be here in the morning.  She’d get another pep talk each morning, begging her to power through so that Daddy could see her when he came back after work.  Every day was spent fighting for her – making sure that there was a future for our daughter.

She was scheduled for her first open heart surgery on December 31st.  On the 28th, I came into a meeting with her surgeon prepared with notes and questions and a plan.  He told me that she was extraordinary, but in the worst ways.  Her little body likely wouldn’t make it out of the OR.  His words were, “the risks here are steep – the chance of mortality is quite high for her”.  He explained the surgery and what he’d be doing.  He’d be placing a band around her pulmonary arteries to try to prevent permanent damage to her lungs.  He wouldn’t be able to do more right now because of the risks revealed in her heart cath.  I looked down at my list of questions… none of which were relevant anymore.  I asked about future surgeries, he said that unless this first surgery was wildly successful, which was doubtful, he wouldn’t be able to do step 2 or step 3 in her repair.  I said, “Okay, then she can have a transplant.”

“No,” he said, “she wouldn’t be eligible for a transplant, because she has Down syndrome and a host of other complications.”  She would likely be sent home to live out the remainder of her short life with the broken heart she had.

The depths of my soul pooled out of me and gathered like a puddle on the floor.  How could her life not be worth saving?  How could her future not be worth exploring every option?  What in the world does having Down syndrome have to do with access to a transplant?

To his surprise, Ellie pulled through her first heart surgery like a champ.  She was given a few months of extra time.  It was now up to us to figure out a way to get Ellie the surgery that she needed to move forward – a surgery with a future and a life.  We looked into pediatric cardiothoracic programs across the country.  We had others refer us to Boston.

When we were finally discharged after four months inpatient, we went to see our cardiologist right away.  She helped us gather our files and test results and she got her foot in the door at Boston Children’s Hospital.  Ellie would undergo her second open heart surgery just two months later.  At the time of her second heart surgery, Ellie was again in the hollows of heart failure – ventilator dependent, fed strictly by her g tube, and spending her days sleeping and sweating.  The surgeon went in and used part of her pericardium (the sack around her heart) to build a septum in her heart and construct a mitral and tricuspid valve.  He removed her PA band.  In six hours, our daughter had a whole heart.  She came through her second heart surgery and had pink little lips for the first time in her life.  Ellie didn’t end up needing a transplant, but congenital heart defects are never gone.  They can be repaired, but her heart will never be like mine.  There is always a chance that she will need additional surgeries in the future – always a chance that a transplant will again be on the table.  While we don’t have to think about a transplant today, so many of the other families we met in the hospital are looking at that option.  So many of them have been told by multiple hospitals across the country that their child was not eligible for the transplant list because of their disability.  If we have to face this again down the road, I’m counting on you to make sure that her disability will not stand in the way of her getting the treatment she deserves.

Ellie just celebrated her third birthday.  She is in preschool and loves to dance.  She’s been in fashion shows and on billboards.  She knows over 120 words in sign language and is learning more and more verbal words every day.  Her brothers adore her and we cannot imagine our lives without the joy she brings to our days. 

I’m asking you to make sure that other families have this same opportunity.  We all deserve the watch our children grow up.  We all deserve the right to equal medical care and opportunities for all treatments.  Denying a transplant to someone because their life is deemed less valuable is absolutely unacceptable.

As Courtney reminded you, six states (Pennsylvania, Oregon, Maryland, California, New Jersey, and Massachusetts) have unanimously passed similar bipartisan legislation to prevent organ transplant waitlist discrimination. Two more (Kansas and Delaware) currently have bills working their way through state legislatures.  Let Ohio be next.

Adults and children with disabilities in need of an organ transplant should be afforded greater legal protection. Their lives are inherently worth saving. Thank you for your support of H.B. 332.

Warm Regards,

Jackie Ward

Miami Valley Down Syndrome Association

Community Engagement Coordinator

This Face

When I was pregnant with Ellie, I was so concerned that she wouldn’t look like the rest of our family.  When she was little(r), I was always a bit anxious in public because I was worried that people would see a diagnosis immediately and miss this beautiful baby.  Soon enough, that fear morphed to them seeing medical equipment instead of a child at all.  But there’s something about this that changed over time.  I used to ache for her to be viewed as typical… I was so afraid of someone labeling Ellie before they knew anything about her.  This is different now, but I’m not sure what changed, how, or when. 

I’ve heard so much chatter in the Down syndrome community in the last few months on this very topic, and I’ve been reflecting on it lately.  Today, I thank God for a diagnosis that she wears on her face.  How odd is that?  The label that I didn’t want to be so visible to the world three years ago is worn as a badge of honor today.  I’m thankful for this face that looks different than other faces, but so much like my own, at the same time.  I’m thankful for this face because it’s a face that draws other in, it’s a face that symbolizes a community of support that I never knew before.  It’s a face that others recognize, but not for the pity or sadness that I used to envision.  Yes, there are people who look at Ellie and look away, not knowing what to say.  I’ve come to terms with those looks.  But there are others who see her that relate so well.  Others that see her and are visibly filled with joy.

For example, we went to the Troy Farmer’s Market this morning to pick up raffle items for our walk next week.  As I stood there chatting with my friend, I saw an adult with Down syndrome walking down the street, very confidently, interacting with the different vendors as she went.  As we left the stand and continued down the strip of vendors, we came upon a booth selling beautiful handmade soaps, where I saw that sweet face again.  Another woman at this booth made her way around that table and said, “I just have to meet you”.  I shook her hand and she explained, “This is my daughter, Ellie, and she just came up and said, ‘Mom, there’s a little girl with Down syndrome over there and I think her name is Ellie, too’”.  What??  I then extended my hand to this twenty-five year old Ellie and spoke a bit with her.  She was sweet and kind, her momma just the same.  She had heard my boys saying Ellie's name and had to share with her mom.  The mom asked a few questions and then said, “Wait… this is a trach, right?" (pause)  "Do you know the Adams?” 

“Kenny and Connie, yes I know them.” 

“Oh… this is the Ellie I’ve been praying for.  I’m so happy to finally meet you.”

Wow!  This is the beauty of community.  This is the beauty of small town living and also the beauty of a diagnosis worn on a face.  We would have never met had her Ellie not spotted mine.  Knowing the struggles that she’d gone through, this momma has been praying for our Ellie for all of her three years of life… and I never knew.  As crazy as it sounds, this is not the first time we’ve had an encounter like this.  We’ve had several.  Thanks to this blog and its faithful readers, our story has been shared with others who have no idea who we are.  We met a family while we were out to eat once and they kindly asked questions about all three of our kids.  As soon as we introduced Ellie, they said, “Wait, is this the little girl from Adventures with Ellie?”  I have no idea what my face said in that moment, but I was pleasantly surprised that they, too, were reading about our journey and again, praying for our family. 

Since we were in Cincinnati, I started to reach out to other parents when I’d see a child with Down syndrome.  I’m sure this was incredibly awkward for them because I know I stumbled over my words at the time.  They were gracious, nonetheless.  I saw a sweet little boy in a stroller in the kitchen once and sought out his mom.  I said, “Is this your son?  Does he have Down syndrome?”  Her face was a little skeptical until I said, “My daughter… she has Down syndrome, too”.  Instant relief on both our parts.  I did this again a month or so later when I met a handsome young boy and his momma on the playground at the Ronald McDonald House… and again when we were waiting for a table at Red Robin with our boys.  I always have to throw in the caveat, “my daughter does, too”… but I’m getting better at this greeting.  As much as I didn’t want people to assume anything about Ellie from her face, I get super excited when I meet another person with Down syndrome today.  At some point, I embraced this face of hers and knew that it meant I had instant access to this new world.  A doorway that opened up to a secret garden of incredible souls who have the same trials, hardships, joy, and beauty that I see every day. 

All of that being said, I want to take some time to thank each and every one of you for following along, for praying for us, and for sharing our story.  I have so many other families from all over that I follow because someone shared their journey.  We’re thankful for the community we have, but also for the vast virtual community we’ve established, too.  And in case you don’t already, I give you full permission to use Ellie as your gateway to this community, too.  You are granted permission (not that you ever needed it) to ask a stranger about Down syndrome and you’re allowed to use, “My granddaughter/friend/niece/cousin has Down syndrome, too… and she’s wonderful”.  There’s so much beauty in this face… and I’m thankful for her face that is the same, yet so very different from mine.  Have a wonderful weekend, y’all!

I have to run... Ellie just climbed into the dish washer.  Such is life.

This FACE!!

Ellie, Uncle Josh, and Ethan at Lance's race last weekend

Visitor lunch day at school on Friday.  Lance was happy to have us and sit with this cousin, Jack

The five little boys of our family... yes, they're crazy... yes, they're all boy!

Lance, Jake, Kaleb, Noah, and Ethan