Sunday, January 18, 2015

What a Week

After his visit on Wednesday.  Like the
mask?  We were doing everything
possible to avoid bringing home
any new bugs. And the cute bib
is courtesy of Gramma Brown.
Love my li'l bandit.
Oh, boy, it has been a rough week.  But I guess I'm glad the "rough" was the first half and the second half has slowed down a bit.  This may be a bit disjointed and it's kinda long, but hey, you're invited to my "therapy session" and you've been warned, right?

Sunday night we had various parent/child meetings for scouts and church with a few of the boys.  Deborah kindly offered to stay with Aaron.  Except Aaron was feeling left out, I guess.  He had a massive asthma attack that had her giving albuterol, and then bagging him because his heart rate was too high for a second albuterol dose but he was still struggling. I raced home, we bagged some more, got his heart rate back down, gave more albuterol, and he figured he'd gotten what he needed so he went to sleep.  We had no nurse that night, either.  But that also meant I was right there, keeping a close eye on him myself.

Monday morning, I was in Aaron's room as Joseph (14) was headed out the door for school.  As he waited for his ride I thought, "you don't look too good, maybe you should stay home."  Except it was the last day of term and he had assignments that had to be turned in.  Yeah, I could have taken it over, but I figured he'd be okay.  Um, not really.

About noon he called and said his throat was killing him and his head was exploding.  "Turned everything in?"  "I will have in the next five minutes."  "Okay, I'll come."  When I got there, he was a mess.  You could tell just looking at him.  I called his ped from the school to see if we could get in for a strep test, and hoped he hadn't given it to Aaron.  (See, I'm really good at denial.)

Uh, not strep, Influenza A.  Yeah, the nasty one that the flu vaccine missed.  And while we were waiting at the hospital for the test, Aaron did it again.  Yep, more asthma.  Racing home, again, to take care of things as they threatened to spiral out of control.  At that point, I also gave an emergency dose of steroids and started him on a 3-5 day steroid regimen.

Joseph was quarantined to his room, yeah, the good old fashioned quarantine where he doesn't come out for anything except bathroom breaks (in a bathroom no one else could use) and the only person who ever goes in just delivers food and picks up trays, and scrubs really good afterwards.  Hey, it's worked before and seems to have worked again.

Tuesday was pretty quiet, thank heavens.  We needed a small break.  But a small one was all I got.

Wednesday, William had some minor surgery.  And yes, it was minor, but it was still surgery.  And Aaron had an appointment at Primary's with four different specialties that had been scheduled since August and simply couldn't be put off.  Cancelling it would have had him seen next in June, plus, remember, his asthma is out of control.  Not breathing for six months?  Not good.  We had to keep it.  So I took William to our local hospital and stayed briefly and had to leave.  A kind neighbor picked him up afterwards and brought him home.

Meanwhile, I got Aaron from school and headed north.  Unfortunately, in the craziness of all the preps being done for the day (food, etc, for Joseph in his room, William's surgery and Aaron's appointment) we missed a filter on Aaron's vent system that helps keep his air warm and humidified while he's away from home.  As we got to the hospital, his breathing changed, became labored, he started to look worried.  That's when I realized what was missing.  I couldn't find a spare quickly and knowing the respiratory therapist would have one upstairs, we made our way to the check-in desk and told the nurse that we needed to get a "nose" or a filter from the RT that was there.

By then, Aaron had held on as long as he could and started dropping, fast.  I turned up his oxygen and suctioned, got almost nothing, but he dropped even faster.  As he hit the low 70's, I was grabbing his ambu bag (again!  3rd time this week!!) and taking him off the vent.  I turned around and told the secretary,  "I need the RT here, RIGHT NOW."  I didn't even realize that right behind her was the nurse who did an about face and left immediately.  As he dipped below 70% (these are his oxygen saturation numbers) I briefly wondered if I was going to have to have them call a Code.

At that moment, I managed to pull a really big, thick plug out and our trach whisperer came around the corner followed by that nurse.  We pulled more out of him, used saline to break up more of the junk down there, and got him back.  And then I started breathing again myself.

Just then, my phone rings and it's William's surgeon.  He asked how I was.  Probably not the best question.  But at least he was calling to say that everything went well, surgery was done, and William was recovering.  Aaron was also recovering, and I was trying to recover as well at that point.

Aaron's visit went well.  We're taking one medication off since it's for allergy relief, and his recent testing shows no allergies whatsoever, even to cow dander.  (Yeah, who'd a thunk it?)  And since he's been on oral steroids nearly every single month for the past five months, we're going to try an inhaled steroid instead.  It's still a lot of steroids, but at least it will target his lungs directly and not have to go through his whole body.

Oh, and all of the above was preceded by nightmares on Saturday night.  Not going into them, but they involved Aaron and hospitals and really bad outcomes.

Needless to say, by Wednesday night, I was a mess.  The PTSD was alive and in full force.  I really had no idea how I was going to be able to sleep or function, so I started looking up ways to deal with it on the internet.  That wasn't real helpful as most of it involved things to remind yourself that you were in a safe place, the danger was gone, and so forth, and seeking professional treatment.  Well, the danger was NOT gone, and I needed help now, not in a few days or weeks.

I also started praying about how I was supposed to put this behind me and move forward.  I was reminded that our leaders have often taught that gratitude is a balm of healing for many things.  I started by sending an email to our trach whisperer.  I know she can't do everything, and she can't always fix things, but just at that moment, it helped to see her.  I started listing, out loud, the good things that are happening, including the gourmet hot chocolate packet I found hiding in my cupboard.  I'm grateful for hospital staff who knows me well enough that they trust me when I say I need help, and don't think I'm just crying "wolf."  A friend and one of our nurses both offered to loan me a diffuser and some OnGuard to purify the air.  I don't know how it works, but my house sure smells good.  Joseph was improving and no one else had gotten sick.

And guess what, being thankful worked.  It helped, a lot.  It refocused my perspective.  I slept really well that night with nothing but silly fluffy-type dreams.  Sleep, a wonderful thing!

And Joseph, William and Aaron?  They're all doing well.  Joseph is chomping at the bit to get back to normal activities.  William is recovering well.  And Aaron is only using 1-2 liters of oxygen and his lungs sound great.

Life is good.  We go on.  And I'm so grateful.

"Thinking of things we are grateful for is a healing balm."


  1. Reading this post took me back to those days, not so long ago, when we were in the same spot. O2 saturations dropping, searching frantically for the problem, albuterol, bagging my precious son. Praying, praying that this wouldn't be the time he went back to God. Thankfully, he's off the vent and got his trach removed last April so he's doing really good. But the fear and the PTSD is still there. I guess it never goes away. When I finished reading your post, I had to breathe deep and slow my heart rate because I was right there with you. God bless you and your family. You all are in my prayers daily.

  2. Oh my stars, you darling woman. What a week. Bless your house. Here's to healthy people and fluffy dreams.

  3. Wow. What a miracle that you were able to find peace in such a stressful time. Thanks for the lesson.Truely amazing that noone else has caught the flu. I would not have thought that possible.

  4. P.S. Of course you have PTSD! Oh my goodness! Praying for you.