ABCs

Have you ever caught yourself visually tracing the contours of your child's face in the wee hours of the morning while they slept?  No?  Me, neither... well, until Monday morning.  Who has the energy to wake up before the kids and watch them sleep?  Not this girl.  However, Monday morning, I could hear Ellie jabbering through the monitor before 5am.  By the time I made it up to her room, she was sitting upright unraveling her pulse ox probe and had turned off her cool mist machine.  I scooped her up, changed her diaper, and headed back to bed hoping to get her back to sleep in my arms for a while.  She fell back asleep quickly, I, on the other hand, started reeling through what my day held... and couldn't sleep.  At some point, I stopped daydreaming and looked down at her sweet face, snoozing away in the crook of my arm.  I whispered a prayer thanking God for this crazy little girl that I never knew I wanted.  I mean... I wanted a girl... I just never thought I needed one so wildly different.  But she's changed every ounce of who I am and in that early morning moment, I was eternally grateful.  I'm glad I had these few minutes with her as just a few minutes later, I was alerted of school closings and soon realized that a day of chaos was about to ensue.  On to the topic I really want to lay out, though...

Elz was originally diagnosed with severe obstructive sleep apnea when she was just under three months old.  Since then, she's had nine sleep studies and a boatload of procedures to help this and fix the myriad of other wonky things she had/has going on.  First, there was the nasal cannula to increase oxygenation, then the trach and ventilator.  Then we weaned off the vent and onto bipap, then onto just a cool mist collar around her trach at night.  We still need oxygen bled into that line a few times a week, and she still sleeps with a pulse oximeter on her foot to make sure we know when her oxygen saturations dip lower than we want them to.  Her saturation goal is 90%.  Have you ever had an oximeter reading of 90%?  I haven’t had mine taken often, but when I was really sick and felt like I had a bag of cement on my chest, my reading was 93% in urgent care and they gave me an albuterol treatment that finally made me feel like I could breathe.  So a saturation of 90% feels awful to the rest of the world… but Buggy has always been a bit different.  When she was little, her goal was to stay above 70%... but that was a cardiac thing and we’re not living in that world anymore (thank goodness).

Anyhow – back to my story – her sleep apnea was always an issue, but it didn’t take center stage until after we tackled the most life threatening issues she had.  Raise your hand if you’ve taken a CPR course.  How many of you remember that you had an acronym to remember the priorities you check (okay… this is before the hands-only CPR method… I’m old school)?  You checked your ABCs, right?  Airway – Breathing – Circulation.  For Ellie… her ABCs have been jacked up from the start.  We addressed them in reverse order… but we’ve addressed them all.  Circulation trumped all others in her case, so we had those issues fixed in her first 9 months of life.  Breathing was the next hurdle… and we were pretty sure we had cleared that one once we were able to put the ventilator on standby.  And airway, she’s had a ridiculous number of surgeries to stabilizer her airway and has had that handy dandy trach in place for three years as a crutch until we get to a solid place for her airway. Once we have her airway on solid ground… I feel like we’ll smash A and B out of the park.

Now that we have some background, let’s jump into the present.  Ellie had a sleep study done in mid-December where she slept with a capped trach.  So all of her breathing had to happen from her mouth/nose while she slept (remember that she hasn’t had to do this since she was two months old).  We made it through the whole night and anxiously awaited the call from her specialist to give us results.  They hadn’t rushed in through the night and uncapped her, so I knew this sleep study had gone better than her last.  I was cautiously optimistic.  Her ENT called me on Monday to go over results.  Here’s where we’re at now:

•       Ellie’s shown marked improvements in her ability to breathe while she sleeps.  In the past, her apnea-hypopnea index was in the 60s (double the threshold for severe sleep apnea).  Now, it’s measuring 26.  So she’s only half as bad as she was in April 2017.  That’s good.  But 26 isn’t great, either.  We’re getting there.

•       Ellie had no episodes of complete obstruction – this is fantastic – removing three tonsils and her adenoids and some tissue from the inside of her trachea has helped tremendously here.

•       She had 1 episode of central sleep apnea (this is where the brain forgets to breathe).  Sounds awful… but 1 episode isn’t bad.  The crap part about CSA is that there is no way to fix it… it has to resolve on its own.  Her doc wasn’t concerned about this, though, so neither are we.

•       She had 231 episodes of incomplete obstructive apnea.  Ugh.  So 231 times during the night, she stopped breathing.  That’s roughly once every two minutes that night.  The length of her apnea episodes lasted anywhere for 17 seconds to 44 seconds and dropped her oxygen levels between 82-89%.  This means that she's still in the "severe obstructive sleep apnea" range.  Frickety frack.

Needless to say, with results like those, this trach isn’t going anywhere right now.  When she was inpatient last week, we also got a new diagnosis of reactive airway disease (RAD) [think: asthma].  So we’re kind of bummed out about it all.  It’s not horrible.  We’re realistic… and we’re used to this trach life… but I’m not over here throwing a party, either.

Her doc said, “How do you feel about this, Mom?  What is your breaking point for the timeline on the trach?”  Ha!  I told him that we’ve had the stinkin' thing for three years now, so it’s not like it’s anything new and it’s not like we have a huge adjustment to keeping it.  And while, OF COURSE I want it out… I fully realize that she has to be able to breathe AND sleep… so we’ll hang out here for a while longer.  He said we’re probably looking at a solid year yet – maybe two.  And in response to his question about my breaking point, I said, “Right now we’re okay.  We have a plan that works.  She has the care in preschool and home that is good for her and a staff that’s very capable of taking care of it with us.  I really don’t want her to go to kindergarten with it, though.  That’s 2.5 years away and I REALLY don’t want to do that.”  Of course… if that day comes and we’re still in this position, we’ll do it… but I’d rather not.  He said that seemed pretty reasonable and we spent the next long time talking about the things he thought might be causing distress still… and interventions we could work on to address them.  Some things we can do in the next year:  a sleep endoscopy, a tongue resection (if needed), fixing the suprastomal collapse in her trachea.  Some of the ideas (if they’re the culprit) are things she’s just going to have to outgrow: a small nasopharynx and tracheomalicia.  So from here, we plan to go back into the OR for a sedated sleep endoscopy to help evaluate her airway during sleep with a camera.  This would help us determine the next steps… and we’ll have this scheduled sometime in the late spring/summer time frame to keep this trached kiddo away from the hospital if at all possible during cold/flu season. Dr. Elluru (her ENT & surgeon) is also bringing in Dr. Kalra (pediatric sleep medicine) to help handle our case.

During our stay in TCU last week, along with the RAD diagnosis, we were referred to work with our pediatrician on getting answers to some new questions on storming, too.  We like to keep Dr. Smith busy, I guess.  So we’re diving into the possibility that storming (in Ellie’s case) may be related to cyclic neutropenia.  This would mean that Ellie’s white blood cell count would dip in a cyclic fashion… and that, in and of itself, would throw Ellie into a storm and also make her SUPER susceptible to sickness.  This might make sense… but is all new to me.  We’re bringing the Infectious Disease team on board to see if they have any suggestions or ideas about this. 

For now, we’re just taking things as they come and bouncing around to see if we can come up with plans and such that make sense for us… that make sense for Ellie.  I can’t say enough how fortunate we feel to have a team that is crossing all Ts and dotting all Is as they try to do what is best for our Bug.  She sure is a complicated little booger.

And for following along through my vomit of medical jargon, here are some recent pictures of our crew.  Thank you for continuing to care, for continuing your prayers, and for drudging through this weirdness alongside us.  We love you! 

Some light reading as we checked in for the sleep lab

Sleep study #9:  I'll never understand how anyone can actually sleep like this.

Have you tried Kiwi Crate?  It's super cute and your kids can do projects each month.  This month, the boys made a stethoscope (that works), and sewed these plush organs to put on their body... and made glow in the dark x-rays.  Cool stuff!

Buggy on Christmas - it's not often we get a still shot of this busy body

Dressed as Moana, holding Moana, watching Moana... can you tell it's her favorite?

Christmas with great grandma Shuster

Christmas with great grandma Ward

Big cousins are the best - Andrew cuddling with Kaleb

Please tell me that other people's kids steal their phones to take silly face selfies while going potty.  He took about 42 photos and 3 videos of him singing me songs.

Grandma & Grandpa Schroer on Christmas Eve (at grandma Shuster's house)

Mamaw and Papaw Maier on Christmas

Ellie decorating her hospital bed

And watching Moana... for the 8th time in 3 days.

Papaw Ward & Stacy visited for Christmas, too!

We got a movie projector for Christmas.  Best. Gift. Ever!  Now we have movie nights and project a 12' screen on the wall.  So worth it!

Mook was drawing pictures in the lobby of Dr. Smith's office.  He said, "These are birds.  This is a hurricane."  I said, "Like two sparrows in a hurricane?" and chuckled as the song played in my brain - yeah, Tanya Tucker!

Grief and Love

These past few weeks have been both quiet and chaotic in our household.  We’ve been hustling and bustling around the holidays, we’ve had lazy snow days at home.  We’ve been taking down our Christmas decorations and sprucing the place up to look fresh for the New Year.  We’ve been going through old things and getting rid of what we could – and overall, just enjoying this time we’ve had together as a family.

We also spent a few days in the hospital after Buggy had some unexpected illnesses.  We joke that Ellie knew it was a new year and wanted to make sure we met that deductible on day one.  Little monkey.  Our rush to the ER last Monday was a scary drive, mostly because we’d been shaken to our core recently when a little friend of Ellie's and Kaleb’s passed away.  I don’t want to compare our experiences to theirs at all, but when another little kiddo with medical complexities seems to be so healthy (for her) and then is swept into the arms of Jesus so suddenly, it’s hard not to think about how damn fragile life is.  Not just for kiddos like Victoria and Ellie… but for all of us.  It’s hard to swallow the lump in your throat when you can’t see through your tears of mourning as you’re trying to keep it together.  I waited until after Christmas to let Kaleb know that his sweet friend passed away.  We both sat and cried it out together.  Then he asked me for a blank paper and grabbed his crayons and headed to the table.  He drew a picture of him building a block tower with Victoria and showed me.  I put it on the fridge and let him know I’d give it to her parents.  A few days later, I came out of the bathroom ready to go to her viewing.  Kaleb saw me (not in yoga pants) and asked where I was going.  I told him.  He jumped up saying, “I want to go with you”.  I encouraged him not to.  I told him that it was not a fun thing… it was a very sad time and I didn’t think he wanted to go through that.  I was trying to shield him from the realness of it all.

See, when I had just graduated high school, a close friend of mine died during our class trip.  The days that followed were impossible.  We’d been there… we’d seen things as they transpired.  We got the call from friends who went with the ambulance to the hospital.  We made the calls home and parents cried on the phone with us and booked us emergency flights home.  When we went to his house to talk with his parents, I can’t begin to describe how awful I felt.  How unfair it was that we were home… and he was not.  The guilt in the midst of that grief was unbearable.  I took my own experience and tried to impart a bit of that wisdom on Kaleb.  I told him that he didn’t want to see Victoria this way and that it was better for him to remember all the fun things they’d done together.  Through tears he said, “Mom, she’s my friend.  I’m going with you.”  I called Brandon to get his take on it.  If Kaleb really wanted to go, he could go.  So I sent him upstairs to get some nice clothes on.  He came down with a new button down and asked me to put his tie on him.  He had slacks on and brought down tennis shoes.  We swapped the shoes for dressier shoes and combed his hair.  All the way there, he talked about Victoria and the things they’d done together.  He talked about how funny she was and about all of the things they’d done together in the two years that they were in the same classroom.  I was so proud of him, but still unsure of how he’d react at the funeral home.

In October 2016, my grandma passed away.  This was the first funeral that my kids had gone to that they’d remember.  They mostly played in a back room during the viewing.  They had a TV there to watch and games to play.  Not until the end of the day did they come into the room to be with the rest of the family.  It was then that my boys realized that grandma was in the front of the room, laying in a casket.  Lance stood back and looked over her, then sheepishly came back and sat by me.  Kaleb went up to the casket and stared at her.  He stood there for a long time taking in the whole situation, then came back to me and said, “Mom, isn’t that your grandma that got dead?” in a voice way too loud for comfort.  He went back up to the casket and took another long look, then came back and joined me.  He was pretty awkward.  I was sure this time would be no different.

When we walked into the funeral home, Kaleb immediately noticed the screen in the lobby cycling through pictures of Victoria.  He carried his artwork with him as we went into the viewing.  I went up and hugged her parents and spent some time talking with her momma.  Tears poured down.  Kaleb followed suit and hugged her dad, then handed him his drawing.  He hugged her momma, then took a long look at Victoria and told me how pretty she looked.  She did look pretty.  He went up closer to her casket and showed me all the things he recognized in there – her special backpack that he said held her feeding pump (he knows all about these, he said) – her doll – and other sweet drawings.  Victoria’s mom thanked me for bringing Kaleb and we proceeded to spend the rest of our time looking at the hundreds of photos throughout the room.  Kaleb was excited to look at the pictures and show me how cute Victoria was as a baby and was really excited to see a picture with him and Victoria together.  Overall – he was everything I needed him to be that day and more.  He showed strength and peace through the viewing that was admirable for a five-year-old.  I know that he likely doesn’t understand the whole impact of the situation, and that is okay.  I was afraid to bring him with me… I was afraid that seeing classmates would be too hard on her parents.  I was wrong.  Looking back on my own experience at 18, I was probably wrong then, too.  I’m sure Jason’s parents had a very hard time seeing us come home when their son couldn’t, but I also think that maybe it was helpful to have his friends in their home again.  I guess I don’t know. 

I’ve had far too many friends and family members lose their children.  I’ve thought about this scenario too much.  I know that if one of our children were close to going home to heaven, I’d want the rest of our children there, too.  I don’t want to shield them from the pain of that experience.  While it’s tragic and it’s awful and it’s a pain that never goes away, it’s always seemed like a necessary pain to me.  As most of you already know, I lost a nephew 13 years ago.  The pain of his passing is still so very sharp.  It’s sad and it’s unfair and it’s overwhelming, but it’s real.  And the pain we feel today is a testament to the impact his little life had on our hearts.  When a friend of mine posted this video last week, I had to watch it several times.  If you watch to the very end, you’ll hear her say, “You can trust a human being with grief.  Grief is just love squaring up to its oldest enemy.  And after all these mortal human years, love is up to the challenge.”  In that story and in my own, children have found ways to teach us adults that love is certainly up to the challenge.  Allow grief to well up in you and burn in streams down your face.  Let that love you have square up against death and let it be real – however that manifests for you – because we are capable of handling it.  Our love is great enough.  Take in your day today – and tomorrow – knowing that love sustains us all.  Take some time to be thankful for all of the sweet memories you've made with the loved ones you've lost.  Let grief happen.  Let the scars be known because they are, indeed, signs of love... deep, ridiculously beautiful love.

This link will take you to the powerful video on grief.