May Means Lots of Pictures, and Some Musings...

Soooo much going on.  You know, it's the end of May.  That's the way it works.

We've had final sports...

And final concerts for everyone.  

Including the final final choir concert for Matthew.  The tradition there is the Chamber Choir all gathers around the piano and sings "The Music We Made."  That one always gets me.  Maybe in part because choir was my "thing" in high school, and I still have very fond memories of the time, the laughter and the tears we shared.  

Aaron even had a dance festival, although it was so sunny out that he wasn't as enthusiastic as he often is.  His eyes are light sensitive and it's hard when it's bright out.  

Even some scout awards were thrown into the mix, plus we have Joseph's Eagle Court in a week.  

And through it all, Aaron was there.  At least for most of it.  There were times we chose to leave him with a nurse at home because of his needs.  Last year at the band concert he struggled with a startle seizure, and for graduation, well, that was a wonderful mad house, but a mad house none the less.  So he hung out at home for those and played.

But I have to admit, graduation tore at my heart strings in a manner I didn't quite expect.  Matthew was the first graduate to come out, and the pure unadulterated joy on his face caused tears in my eyes.  He's a kid who often plays things close to the vest.  It's rare to see his true emotions so clearly.  And he was pumped up!  That grin was infectious.  And I was sooooo thrilled for him!!

It's a little strange to have my 5th child graduate from high school, be the middle one, but only have three more graduations left.  

It also brought to mind a conversation I had with Jonathan a little over six years ago.  We were driving and he said it wasn't fair that our baby wasn't going to be able to have the life the rest of the kids had.  I retorted with:

"You're right.  It's not fair.  He's not going to deal with the playground bully.  He's not going to worry about calculus.  He won't be heartbroken when the girl he wanted to ask to prom turns him down.  He won't have rotten roommates or fight with his wife or stress about his kids.  You're right, it's not fair."

And he asked, "But what about the good things?  What about graduations and making friends and playing sports and singing?  What about those?"  

And I told him I simply couldn't think about those things.  I couldn't process that way, not then.  But watching Matthew broke my heart for Aaron.  He won't get a graduation.  Not really.  His school will "graduate" him just before his 22nd birthday, but chances are, he'll actually "graduate" much sooner.  The oldest living males with full Trisomy 18 passed away before then.  And Aaron has struggled so much lately with his lungs.  So it was kinda bittersweet on Friday.  

But then I look at him, and he's so content with his life.  He has what he wants.  He's surrounded by people who love him and play with him, take him places and make him laugh.  Nope, not bothered at all by the lack of math classes and ceremonies.  He finds joy in the simplest things.

So many others are struggling with a variety of challenges.  I look around and am grateful for the blessings in my life.  June is just around the corner and we get to start it by welcoming Jonathan home.  

Then Aaron's sixth birthday is only two more weeks away.  For a little guy (who's not very little anymore!) who was rushed out of the NICU so he could come home before he died, that's pretty amazing.  Six whole years with this precious child.  We are so, so blessed.

So shines the setting sun on adverse skies, 
and paints a rainbow on the storm. 

~Isaac Watts

A Rough Week

It's been kinda a rough week around here.

We did manage to come home from the hospital on Tuesday, and a sweet friend loaned us a "shake vest" while we try to get insurance coverage for one of our own.  This is a device that vibrates and shakes loose junk inside the lungs.  And also starts about $7,000.  Yikes.  He's been using it twice a day and we're starting to see "stuff" moving.

Being "bagged" while at an
end-of-year banquet.  Yep, that's
how our week went. 

Wednesday he returned to school and came home with a big plug.  The school bus did it's own version of shake therapy and shook a nasty loose just as they arrived.  So we changed his trach emergently, again.

Since then, he's had two MORE trach changes, each with thickened mucus and he's also been quite unstable on his oxygen needs.  Anywhere from two liters to 10 and not maintaining so he's needed to be bagged.  Like I said, it's been rough.

But then there's also the "stuff" going on in my own head, between me, myself and I.  Yeah, he gave us a great blood gas after six hours off the vent, but he's also been getting a lot of plugs.  And the consensus seems to be that's what caused last Saturday's emergency, plugs down too low to suction out.  Plugs are a real threat to trach kids and we nearly lost him last week because of them.  We tried increasing his fluids to see if that would thin the secretions out, but he started retaining quite a bit.  And "wet" lungs are hard to breathe through, too.

Hanging out at his brother's concert.

Plus we've now entered that magic six-week bubble where he simply cannot get sick if he's going to have the surgery he needs.  So I've made the decision that he can't come off the ventilator until at least after he's recovered from his surgery.  That may not seem like a big deal, but inside my mama's heart, it is.

No one likes to think their child can't do something.  We all have dreams for our kids.  For most of us, the idea that they might breathe on their own doesn't even register anywhere on the radar.  But for me, it is (was?) a big one.  And also possibly, someday down the road, the ticket to fixing his heart.  Now that dream is on hold, maybe forever.

Then yesterday a friend of mine didn't wake up.  At least not in this life.  She's a sweet lady, probably ten years younger than me, and a fellow heart mom.  I think I read the post five or six times.  It's an ugly but sad truth that we become somewhat used to medically compromised kids passing away.  But medical mamas?  We're supposed to be invincible. I guess not.

Having fun with his voice while getting his 

shake vest treatment. 

Like I said, it's been rough.

I went to church today, hoping, praying, needing to find some comfort, and honestly, afraid and doubting that I really would.  But I did.  And I'm so grateful.  One young man, getting ready to leave his family for two years to teach the Gospel in Argentina, referred to our Savior's time shortly before the Atonement.  He knew what was coming, and He struggled with it.  He dealt with anticipatory grief.  He knew it, and because He did, He knows what I deal with.  As I study Him, learn more of Him, I can call on Him for strength.  And the Atonement not only covers my sins and mistakes, it also enables or strengthens me when I hurt, when I'm scared, when I feel lost.

So while it's not easy, while I don't have all the answers, or even very many of them, I know Who does.  And with His love and grace, I'll make it through.

Peace I leave with you, my peace I give unto you, not as the world gives, give I unto you.  

Let not your heart be troubled, neither let it be afraid.

John 14:27

Highs and Lows, or Lows and Highs

Last night was a rough night (lows) but this afternoon has been really good (highs).

We settled in last night, but I woke to several alarms about 2:00.  He was struggling again, and once again, we had decreased lung sounds.  He was collapsing, again.  That put the kibash on going home today.  X-ray was called and there was definite haziness in his left lung.  He was also a lot higher on his oxygen.

Today we discussed using the speaking valve for up to six hours and getting a blood gas (pH and carbon dioxide levels) afterwards to make sure that his use of that hadn't contributed.  So we tried this morning, and gave up quickly.  He was just working really hard and breathing fast.  A little later, he was making his snoring type noises, and still working pretty hard.  So in spite of the fact that we had just changed his trach 24 hours earlier, I decided it was time to do it again.

Good call.  That thing was awful!  I don't know how it became so occluded after such a short time.  For reference, we usually change it every 2-3 weeks, and there's rarely anything in it.

After the change, we tried the speaking valve again, and once we suctioned out his upper airway, he did amazing!  In fact, he did the whole six hours, and then gave us a perfect blood gas.  So he's cleared to keep using it, yea!!

He also treated the unit to a concert.  It was loud enough that some of the nurses were concerned that he was upset.  Nope, just playing with his voice.  Of course, as soon as I got the camera out, he toned things down.  But here's a sample of what he was doing.

So IF he can do well tonight, and IF he can maintain on lower oxygen limits, we MIGHT go home tomorrow.  If not then, I'm almost certain by Tuesday.  There is always the chance that something is just starting to brew, in which case, all bets are off.  But for now, it looks hopeful.  And as long as he's good by Wednesday, surgery can still take place in July.  Wednesday starts our golden six-week bubble.

Oh, and look what a friend did for me.  She treated me to a new "do."  It's been years since I've had a cut and color by someone else.  I feel like a new woman.

“I hate to complain...

No one is without difficulties, whether in high or low life, 

and every person knows best where their own shoe pinches.” 

― Abigail Adams

I Almost Blew It

At the beginning, before the struggle.

Today did not go as planned.  This one may be long, and it may be a bit disjointed, but part of the reason I write is to untangle all the thoughts going round and round in my head.  Once again, you're invited to participate in my therapy session if you wish.  If not, well, I guess just move on.

Today was full of fun plans.  Andrew, Aaron and I started the day bright and early, or at least early.  We left the house about 5:15 to help out at the Unified Firefighters Outreach Half Marathon and 5K.  They contribute a lot to Angel Hands, a group that helps families like ours with activities.  The plan was to hang out there and work during the morning hours and then head to a birthday party for another little boy with T18 who turned one yesterday.  (I know!  Pretty amazing!!)

Except as I said, that's not how it worked.  Aaron has been doing really, really well all week, but as we got to the site, he coughed a little bit and struggled some.  It continued so about 6:30 I put him back on the vent (he'd been using his speaking valve).  And he just nosedived.  It was like he wasn't even on any oxygen at all.  I double and tripled checked the lines, the tank, everything.  It was all the way it was supposed to be.  So we gave albuterol (all-better-all) but again, pretty much no response.  So we bagged him and changed out the trach, hoping that would solve everything.

It helped, some.  But not much.  He was actually doing much better on the speaking valve than on the vent, probably because he's on 100% oxygen on the valve where it's diluted quite a bit through the vent.  He kinda hung out okay, higher on his oxygen than I liked, but still "okay."  Gave albuterol again a little while later, in hopes of bringing him up more.  Again, it should have done a lot, but there was no difference.

About 8:30 he got kinda sad and his heart rate went up.  I figured so much for trying to stick around.  But because of his higher heart rate I was worried that maybe a fever was setting in.  I have a thermometer, but it was buried in a bag.  And remember, we're at a "Unified Firefighters" event.  Paramedics and EMTs everywhere, plus a really nice first aid station set up right by us.  So I asked them to quickly check his temp.  It was good, so I figured we'd just head for home.

But I looked at him once more as I buckled him in and decided that maybe that wasn't the best idea, so we headed in.  He really wasn't a happy camper.  My little guy who always smiles cried almost all the way, and his heart rate continued to climb.  Andrew did amazing bagging him.

Now, you're probably wondering with all the medical people there why I didn't ask for help.  Yeah, that would be a really good question.  The thing is, I figured we could handle things.  Except I forgot something.  I didn't listen to his lungs.  I just went on what I was seeing.  Big mistake.

Resting peacefully, once he can breathe again.

When we walked in, the triage nurse was very calm, but she immediately directed us to the doors (that might have had something to do with the fact that Andrew was bagging him as we walked in) and called over vocera "Attention:  Urgent red patient admit, Resus 1" repeated.  Then called the ED RT (Emergency department respiratory therapist) urgently to Resus 1 (resuscitation room).  While she's doing this, she's walking us to, wait for it ...  Resus 1.  In reality, most of the time that Aaron comes in, he's going to come in as a red admit (top priority).  But most of the time, that call goes out when the ambulance pulls into the bay.  It's the first time I've ever heard it called on my child.

The room was full as you can imagine, but it needed to be.  When the RT (and then the nurse and doctors) listened to his lungs, the breath sounds in his lower left lung were significantly diminished.  And that was the only place they could hear anything!!  His breath sounds were ABSENT everywhere else.

By this time, my poor child was guppy breathing (yeah, it looks just like it sounds), retracting like crazy, and mottled from head to toe.  The RT bagged with a therapy bag then put him on a vent with higher settings and 15 liters of oxygen.  They pulled a blood gas and it was as ugly as he was.  His pH was 7.24 (7.35-7.45 is normal, cells quit functioning at 6.8) and his CO2 was 72 (normal is about 35-45).

Fortunately for Aaron, the increased vent settings worked really well and really fast.  By the time x-ray got there, he was opened up enough that it looked like a normal x-ray for him.

After his little nap.

We repeated his blood gas test twice more, first on the higher settings to make sure he was doing okay, and then after he'd been returned to his regular settings.  Both times looked amazing.

So why did his lungs collapse like that?  That's the big question.  No one seems to know.  All his other labs looked really good, including viral panels.  If it had been an allergic reaction to something, or an asthma attack the albuterol should have made a difference, it didn't.  There is nothing to go on.  So he's staying overnight to make sure it doesn't happen again.  He is creeping up on his oxygen needs right now, but we'll see what happens when (if?) he goes to sleep tonight.

But the lesson has been learned.  You know the saying "look before you leap."  From now on (I hope) I'll "listen before I leave."  Had I done that, I would have realized how much trouble he was in.  There certainly were enough emergency personnel there to help.  And they would have put him on the helicopter they were bringing in for show.  It was that bad.  I'm just so grateful that my mistake didn't cost us a whole lot more than a day or two in the hospital.   And I'm grateful I listened to that little voice inside me that said I wasn't going to be able to handle this one at home.
 

“Just breathing can be such a luxury sometimes.”

Walter Kirn

RollerCoaster!! (And a Silly Kid)

This kid of mine....

Earlier this week I ran into a friend I hadn't seen in a long time and we got to talking (go figure).  In the course of things, she asked if life just seemed "normal" to us now, or if it was still tricky and hard.  I think she's one of the first to put voice to the way things are for us.  This is just life the way we know it.

It's almost like going from single to married with kids, I guess.  You know you were busy, active, and your life was full, but you handle so much more now and often without even thinking about it.  There's the major adjustment, and then of course lots of other adjustments, but you mostly just go with it.  And that pretty much describes it.

But this week, man, the highs and lows were so quick it could give you whiplash.

The steroids he was on really did their job.  They reduced the inflammation in his lungs and he was breathing better than he has in longer than I can remember.  He's even used his "speaking valve" for hours, often up to 12, a day.

But then yesterday was a struggle, a really big one.  We went to a funeral for a tiny baby and while there, his oxygen needs went up.  And up.  And up some more.  We actually had to leave early and head for home because even with the extra tank in the car I wasn't going to have enough.  He ran on eight liters all the way home, up from the two he needed when we left the house.

At home he continued to climb.  We started using Albuterol every two hours.  We bagged him.  We suctioned and got nothing.  We changed out his trach.  He finally maintained, but barely, on ten liters.  Yeah, TEN, the limit of what we can do at home.  And I couldn't figure out what was going on.

I mean, he certainly didn't act sick.  Besides his oxygen needs, he looked great.  In fact, he felt like being bagged was an imposition because he couldn't play as hard.  The bag kept getting in his way.

 I couldn't understand what I was missing.  I was on the verge of calling 911 multiple times, I was antsy, anxious.  But his demeanor was so great, and there was literally NOTHING else out of the ordinary.  So we waited.  And I worried.

And then it happened.  Just before his nurse got here.  A huge "code brown."  Nasty, gross, and large.  (TMI?  Sorry.)   And all of a sudden, he started doing better.  Ten minutes later we were on eight liters, after 15 minutes, it was six and I went to bed.  Now he's playing happily on four.

Thank goodness for easy fixes (even if they're smelly).  We get to spend Mother's Day as a family and we'll all be here for Jonathan's call from Argentina this evening.  And it's my last one!  He's home in three and a half weeks!!  (But who's counting, right?)

Giving up is conceding that things will never get better, and that is just not true. Ups and downs are a constant in life, 

and I've been belted into that roller coaster a thousand times.

Aimee Mullins

Some Things Never Get Easier

 Some things get easier, and some never do.

When Aaron was tiny, I was scared of the ng-tube we used to feed him, I was terrified of a g-tube.  I worried every time I had to crack open an oxygen tank that I would do it wrong.  Now I do those things without even thinking, practically (sometimes in actuality) in my sleep.

But death?  The death of a baby, a child, a friend's closest heart, that never does get easier.  And I've been given lots of practice.

When I was pregnant with Aaron, our ped told me that as a resident he met a 12-year-old girl with Trisomy 18.  She was in a PICU with pneumonia and didn't survive that stay, but still, 12!  I was amazed.  I asked him how she lived that long and he told me that her parents were incredibly knowledgeable and meticulous in her care.  At that point I decided that would be me.  I would know everything I possibly could, do everything that could be done, and Aaron would live, maybe.

And I think that's what we all do.  As special needs parents we hope that somehow we can learn more, run faster, do better and keep our kids alive.  But deep down we know that's not the way it works.  These children, even more than most, are not ours.  They're on loan from God, and can and will be called back before we're ready, (as if we ever could be ready).

Every week, often multiple times a week, I hear of another child who has gone Home.  And that, that never does get easier.  I'm closer to some than to others, but they all still hurt.

Today it was a beautiful four-year-old princess.  Born with Trisomy 18, chips were already stacked against her.  She conquered cancer.  But three weeks ago she had to have surgery.  They think afterwards she also contracted a virus.  On Saturday, her family made the choice to place a DNR.  Today she seemed like she might rally, but did not, and instead, passed away.

I ache, oh, I ache for her family.  We've been asked about DNR before, asked "how far" we want to go in saving Aaron's life.  The time will come when we also pull back on care, and I don't know that my heart will ever heal afterwards.

Most of the time, I'm all good with this.  Most of the time, it's just the way our life is, our "new normal" even if it doesn't feel very new anymore.  It's different than most people's lives, but it's still good.

But sometimes, it reaches out and punches you in the gut.

"As long as I'm living, my baby you'll be."

Robert Munsch

International Bereaved Mother's Day and Me

Today my heart is full, heavy, aching.  Can a heart hold all that at once?  But mine seems to be able to, along with a heaping dose of thankfulness.

See, today is the Sunday before Mother's Day, and has come to be known as International Bereaved Mother's Day.  It's an exclusive club whose membership is so secret that many don't even know who all is enrolled.

It wasn't until after Aaron was born that I learned that one of my neighbors was a member.  It was when I was talking with another friend about where Aaron had spent the first two weeks of his life that I learned that she was, too, and it was through the efforts of her family in memorializing her son that the first oscillating ventilator was donated to that hospital.

With Trisomy 18, I know way too many moms (even one is too many but there are a lot) who are part of this group.   And at yesterday's Heart Mom luncheon, there were quite a few pictures with angel wings around them.

I'll join this group someday.  It's kinda strange knowing that you will outlive your child.  I've heard it called anticipatory grief.  Whatever it is, it's real.  Before Aaron was born, I sorta knew in the back of my mind that there were things medical science couldn't "fix."  I mean, you see the billboards about cancer research, hear the radiothons.  But those things happened to "other" people, people I didn't know.  In fact, usually people that those I knew didn't know.

Now I scroll through one of my Facebook accounts and there are many, many children with various tubes or wires or wheelchairs.  They're kinda cumbersome, I'll admit it.  But in our life, to be without them, that's a thought I try not to entertain.

We don't know how long we get to keep Aaron.  He's coming up on his sixth birthday, and that's kinda mind blowing.  I know of at least three occasions where he had the chance to go Home.  There may be more.  But for some reason, he chose to stay.

For him, today is a good day.  The steroids he's been on for just over a week are really doing the job.  I'm a little worried about what happens when he comes off, but for now, I'll enjoy.  His heart rate has consistently been below 100, even awake.  He needs much less oxygen than usual.  And he's been spending time off the vent again, anywhere from four to eight hours.  Today he did it using his speaking valve, a huge accomplishment.

He's happy, he laughs, and he seems to love his new chair.  He looks so much bigger in it, sitting up straight.  But still, I wear my butterfly necklace every day, doing just a tiny bit to remember my friends' children, the ones that won't be making them breakfast next week, the ones that will be instead sending angel kisses on the breeze.

“A Mother is not defined by the number of children you see, 

but by the love that she holds in her heart.” 

– Franchesca Cox