Saturday, December 30, 2017

Merry Christmas, Happy New Year, and All That...

It's been quiet around here, peaceful, mostly. 

I'm feeling grateful, and a little bit of survivor's guilt, but mostly grateful. 

Christmas came and went without (medical) fuss.  Oh, there was a lot of other "fussing."  You know, cooking, cleaning, declaring that I was completely done, finished, not going anywhere until after Christmas, and then making three more trips to the store anyway.  (And that was ME going, not the times I sent someone else.)

Oh, well. 

But there were smiles, bright packages and tons and tons of goodies to eat.  Plus all my kids, minus one, under my roof for almost 72 hours.  Matthew wasn't here.  He's serving a mission for the Mormon Church up in Toronto Canada, but we were able to video call with him on Christmas day, so there was that.  For those brief moments, we had everyone together, and it was so good. 

And Aaron is completely turned around in his sleeping.  It's a bit of a struggle for him as he tries to stay awake during the day, and tries to sleep at night, but mostly he's happy about it all.  Of course, his siblings are similar.  I saw our first one up today about 10 am.  It's now almost 11:30 and the other two are still sleeping hard!  Wednesday morning return to school is going to be painful to say the least. 

I know I've mentioned before that there is some definite PTSD going on with me.  Actually, it's more Persistent Traumatic Stress Disorder than Post, and that's a good thing.  The only way to get to the "Post" part is for Aaron to not be part of this life anymore.  Most of the time we just sail along, no problem.  Yep, there's diapers and feedings, cares and suctioning.  Meds, LOTS of meds, but whatever.  It's what we do, day in and day out and it's just part of the routine. 

But some of you may have seen the post on his Facebook page a week or so ago where I referred to an emergency on the 18th.  For those who are curious, here are the details, in as much color as I can stand to rehearse. 

The Lone Peak Band played their Christmas Concert on Monday the 18th.  Joseph, band geek that he is (and so proud of him!) was actually playing in all three bands.  He's part of the upper two bands, and the director often has kids from those play with the beginning band to help round out the sound as they're a very small class.  Concert started at 7 pm and our nurse was scheduled to come at 6:30.  No problem, that works great.  Until it didn't. 

At 6:25 Aaron started dropping his sats, and pretty dramatically.  I put him on his big tank for the first time in a long time.  12 liters, and nothing was happening.  When he's off oxygen (usually due to Mom forgetting to turn it on) he usually settles with blood oxygen saturations in the low 70's.  If he's struggling, it might be high 60's.  Those are pretty ugly numbers, really.  And even on 12 liters, Aaron looked like he wasn't on anything at all.  We began bagging him, forcing 100% oxygen into those lungs and he improved a little bit, to the mid-70's.  His nurse arrived and I turned him over to her while I stepped away for just a minute to return something to the kitchen.  As I was in the other room, I realized I could hear him vocalizing, a lot and loudly. 

Andrew calls this the "house divided" picture.
Note that BYU is on top of the U of U.
Now, Aaron often does this, but not quite as loudly, and only when he's doing well. I quickly noted that he was pushing way too much air up and past his vocal cords, which meant it wasn't going into his lungs. But I had suctioned, a few times, and the catheter passed easily through the trach and really didn't pull anything out.  However, regardless, the oxygen obviously wasn't reaching down into his lungs and then to the rest of his body. 

Coming back in, I announced we were changing the trach and quickly.  Grabbed his already set up emergency trach, his nurse stopped bagging as we pulled out the one in him and rehooked him up to the new one that I popped in.  Examined the used trach and yeah, it was clean, totally clear, not the problem.  Except in the few seconds that he had no trach in, he coughed hard, two or three times.  We immediately suctioned him and pulled out three big, yellow plugs. 


Those plugs weren't in the trach.  They were down lower, somewhere.  We couldn't get them with the suctioning we were doing.  His sats popped up immediately.  He settled down and went to sleep.  I made sure I had the spare key to the car Joseph had taken over and we left.  Except I couldn't hardly leave. 

I was completely torn.  Aaron was looking just fine, absolutely perfect! We'd turned his oxygen way back down and he was satting in the mid-90's.  He couldn't have been better.  And there was Joseph.  He's a senior.  It was his last Christmas concert.  I needed to be there, too.  We were a few minutes late, had missed the opening number for the beginning band.  And I sat there and cried and tried not to throw up.  I kept checking Aaron's camera, only to see him still sleeping peacefully, numbers exactly where they should be, and his nurse watching him like a hawk. 

As the concert progressed, the music worked its magic on my soul.  I calmed, I found peace.  By the time the beginning band was done, I had stopped crying.  As the Symphonic Band played "Veni Immanuel" the words played through my mind, "Oh Come Emmanuel, and ransom captive Israel," I was soothed.  Wind Symphony's "All is Calm" recalled that there was peace to be had.  Mary knew that grief and pain would come, but that night, that Holy Night, it was calm.  I was reminded Who it is that is in charge, and that He loves my son even more than I do, and He loves me, too.  What a blessing to be so cherished.  He knows our days, our hours, and they won't be numbered less. 

So while the PTSD is awful, I'm grateful it's not over.  And I'm grateful for ways to work through it.  Grateful for solace, for peace, for comfort. 

"Christmas… is not an external event at all, 
but a piece of one’s home that one carries in one’s heart." 
– Freya Stark

Wednesday, December 13, 2017

2737 Days...

2737 days, 391 weeks, 90 months, 7 1/2 years...  such a blessing.

Somehow, I really don't know how, I decided when I was pregnant that if we could manage to get four months, four whole months with Aaron, I would be content, happy.  That seemed like such an unreachable goal, and it would be enough, if we could only have four months. 

I was wrong, so very wrong.  It can never be "enough."  I remember when my dad asked me, just before Aaron was trached if I would ever be ready to let him go.  I quickly said, "no, I wouldn't."  He gently remarked that it was good to know that. 

It's Christmastime.  Our eighth.  Such an abundance of time, yet not nearly enough.  Last Sunday I sang in our community choir.  The theme this year was "The Prince of Peace."  I was grateful to be able to get through the songs, mostly.  The closing hymn was "Silent Night" with the second and third verses sung by the congregation a capella.  By the end, there were tears running down my cheeks. 

See, it's a wonderful, joyous time, full of lights and happiness and fun.  But that's not the reason for the season.  It's our Savior's birth, and His gift to us.   

Last week, a woman I've been in contact with delivered her T13 son, and buried him on yesterday.  Saturday another friend's daughter here gained her angel wings, and yet a third child went Home last night.  And it was the angelversary (1 year) of another little girl that I was very close to.  Each one of these rips at my heart.  I know the moms.  They now belong to an exclusive club that no one wants to join, and yet I will, and so will many others.

To be privledged to sing of the Savior's birth, of all that that means...  Well, I am so, so grateful for Father's gift to us.  A line from "Good Christian Men, Rejoice!" kept (and keeps) running through my mind.  "Now ye need not fear the grave, Jesus Christ was born to save!  Calls you one and calls you all to gain His everlasting hall!  Christ was born to save, Christ was born to save." 

And that is the whole purpose of His life and gift, and everything.  He was born to save us.  I don't think I could handle this life, not just Aaron, but all the everyday challenges and struggles and minutia that goes into everything, without knowing that there is a higher power, a Being who loves me beyond measure.  And to think that there was nothing, no continued relation, no afterlife where we get to be with those we love and who also love us, well, my heart aches even more for those who don't know about this.  As hard as it is to be missing someone, especially through the years, we do have the anticipation of a joyful reunion.  Without that, life would be pretty unbearable.  With it, we know that while there will be pain, and we do miss our loved ones, it will end.  They are watching over us, they are aware, and will help us when they can. 

And then we also sang "Were you there," wondering if we were part of the heavenly host celebrating and singing and rejoicing at His birth.  I can't see why not!  What a wonderful night that would have been, and how we must have joyed and rejoiced to witness it.  Surely all the heavenly hosts, of which we were part, must have thrilled at the occasion.  The birth of any baby is such a miracle, but the Christ child, even more so.

I love this season, the season of giving, of sharing, of hope, of love.  I am so grateful for the chance to focus even more on the Savior.
And I'm grateful we're still sharing this journey with Aaron.  He had one of his "all you can eat" visits at the hospital today.  No one is quite sure what's going on, but it's good stuff.  His oxygen needs are lower than they've been in probably over two years.  He's sleeping less, that's a good thing.  Pulmonology said his lungs sound really good, and we're trying again to take one of his medications off.  It didn't work last July, but maybe now it will.  

I've gotten the final numbers from his heart cath, and yep, they're as ugly as I thought.  Research I found talked about one particular measurement and said that it's not good if it's over a six, and "particularly sinister for pediatric patients if over ten."  Aaron's comes in at a 12.   But it also noticed that in children with acquired pulmonary hypertension due to a cardiac defect (yep, that's us!) while the numbers are usually much worse, and don't respond well to medication, it also progresses very, very slowly.  So I'm going to go with that.

And I'm going to enjoy my crazy, silly, don't-want-to-sleep-at-night little boy.  Like I said, an abundance of blessings.

Unto us a child is born, unto us a son is given ... the Prince of Peace.
Isaiah 6:9