Sunday, May 20, 2012

It's Not PTSD, But What Is it?

Got him out!

Right into the glove!
Fun and games continue at our home.  Actually, fun and games is a good way to describe it.  Aaron went to two of the four baseball games this week and we also finished up the soccer season.

He also got a "long sitter" chair that he's really enjoying.  He spends a good portion of each night (yeah, he's still pretty mixed up days and nights) playing in it.

Rocking out in his long sitter.
On Friday night, Mary and Jonathan were playing the piano as I was rocking Aaron.  It was so great to be able to sing fun songs to him.  He really got into them, waving his hand around and smiling.  It took  me quite a while to be able to sing to Aaron.  Others have right from the beginning and it bothered me that I couldn't.  Every time I would start, I would cry.  Music is so imbued with emotion that I couldn't separate the two.  Friday was a fun evening.  We sang songs from "Rigaletto" (the movie, not the opera), "Behind the Waterfall" and "Sound of Music."  We sang "Grandfather's Clock" and "All the Pretty Little Horses". And others that I can't even remember, but I'll always remember those feelings.  A good memory.

However, we've also had some intense moments.  He decannulated this week for the second time in just a few days.  This time I had a really hard time getting the trach back in.  He was tight enough (like when you clench a muscle) that the trach just kept bending back on itself.  Last time I was able to just shove it back in.  This time I had to pull the air out of the cuff (like a balloon on the end of the trach).  Still wouldn't go in.  So I grabbed the obturator, a skinny, stiff plastic piece that makes the trach inflexible, and used that to help it go in.  As you can imagine, he wasn't happy at all.  We cranked up his oxygen and Daddy rocked him for a while and he settled back down.  But I wondered for a minute if I was going to have to get his back-up trach.  While it was handled quite calmly, it really wasn't much fun for anyone.

He's also being kinda squirrelly again (or still?).  He's still not real stable on his oxygen, up and down quite a bit.  And his secretions, those lovely things we pull out of his lungs, are tinged with color.  That suggests that there might be something brewing.  Yesterday I was all set to go to Michael's last soccer game.  Then, 30 minutes before game time, Aaron dropped his sats, down into the 70's.  And I couldn't convince him to come back up.  His lungs weren't sounding good and we weren't getting anything out with suction, so it was time for a breathing treatment again.  It worked, it worked really well.  BUT, this is what happened mid-April when we went rushing back up to Primarys.  I had given him an albuterol treatment, he did well for about 45 minutes, and then went south again.  Fortunately, this time he behaved himself.  Maybe it had something to do with the talk Daddy had with him about needing to be here at home.

So here's where my question comes in.  I've had some people suggest it's Post Traumatic Stress Disorder, but when I look at the signs and symptoms, I don't think it really fits.  I don't have flashbacks or nightmares. I don't avoid certain activities due to fear, but rather due to advice regarding his safety.  There is the hyper-arousal component.  So maybe that's where it comes in.  When we come home from the hospital, especially if he's still struggling, it can take me up to two weeks to be able to sleep much at all.  I hear every alarm, even the short bursts that mean he's just stretched.  Last week I was at Target and a couple paramedics were there, too.  Their pagers went off.  Those tones are very similar to the code alarm in the main part of the hospital.  Now, I don't respond to codes.  Not anywhere in my "job description".  BUT, my heart rate increased and I immediately started looking around for Aaron.  HE WASN'T EVEN WITH ME!

I'm always planning for the what-if, because it often turns out to be the does-happen.  Over the winter, without many admits, my hospital suitcase started to get unpacked.  But since April, it's packed again.  If not fully, then with the things that are not actually in it are right where they can be grabbed.  I keep tamales in the freezer to grab when the ambulance is on the way.  (One of the few foods that actually tastes good warmed in a microwave, but I probably will never eat again anywhere else.  Too many memories.)

Yesterday, when Mary headed out to go to that soccer game with Michael, I was fairly certain that we'd still be here when she got home.  Certain enough that I didn't take Aaron's car seat out of the van.  But Michael's games are played on the field behind the fire station.  And I told her that if the ambulance pulled out and her cell phone rang, that she'd better tell someone to bring Michael home and come quickly.  Turns out we didn't need it.  But when Deborah left for work last night, we did pull it out.  Just in case.

So if it's not PTSD, what is it?  If he sleeps too much, secretions change, alarms much, I worry.  I have a very hard time thinking or focusing on anything else besides him and his care.  I don't sleep well and I'm constantly monitoring him to make sure he's okay.  Meantime, he's playing, working on rolling over, smiling and growing.  Hyper-vigilance helps to keep him doing those things.  So maybe it's just being a mommy, and doing what you have to do to keep your child happy and alive.  Because in spite of that "incompatible with life" label, he is happy and he is alive, oh, so alive.

And by the way, we're celebrating in just over two weeks.  So save the 13th of June for a party!  Two Years Old!!


  1. Rebekah,

    Do you use any water based lube when you put A's trach back in?

    Ivy Lane told their nurses NOT to use any lube when placing trachs and it did some damage to Parker's stoma, not to mention make trach changes a fearful experience for him. grrr.

    Parker's ENT has told me to use a water based lube....he even had me lube up the trach as he watched to make sure I was putting enough on.

    Anyway, that lube sure helps get those cuffed trachs in. Also, you may want to have a totally uncuffed back up or two on hand for emergencies. xoxo

    1. This comment has been removed by the author.

    2. Oh, yes, we goop him good with lube. I'm shocked that they tell them that. But I train them here, and have them do a change when they first come on. And I watch them do it and have told them to use a lot and then suction him back out. In fact, we lube both the trach and the stoma. My back-up one is an uncuffed one, and I never did use lube or an obturator with that one. It goes in slick as a whistle. I miss using it...

  2. Rebekah, I'm no clinician, but certainly live in the land of PTSD...we're bombarded with it daily...have been for years. Anyway, I would not be surprised at all if that is how you would be labeled. You are in almost constant "fight or flight" mode trying to keep Aaron safe and alive. You're not having to be hyper-vigilant about insurgents or IEDs, but hyper-vigilant about life and death matters, just the same. I can't even imagine living on that kind of adrenaline. And 2 years?!! THAT is something to celebrate! Can't wait to read all about it. =^)

  3. Oh Rebekah, that sounds scary. You are so amazing... though if you're like me - you're getting tired of being "amazing", and would sort of rather be "average".

    I also think that PTSD is a possibility. I think I may have it too, ever since we got a 2am call when Norah was 3-months old, rushing us to PCMC. Life with a medically fragile child is so intense. Our cortisol levels are constantly overloaded, and we can't ever seem to rest our minds at ease. Norah was trach'd at 6-weeks, but has always been inpatient (she demands her Drager vent!), so I can't imagine how scary it will be at home. But when that day comes, I'll definitely look to you as a role model.

    **hugs*** and happy almost-birthday Aaron!!!