Friday, January 30, 2015

Asthma, I Hate It

Asthma. I hate it.

Heart rate creeps up
Breathing increases
Sats go down
Pulling with arms and legs, 
Using accessory muscles to try to get air into too tight airways
Albuterol finally kicks in and he collapses,
Exhausted from the effort to breathe,
Sleeping, until the next time.
Me, not so much.

Waiting in the ER yesterday, totally
wiped out from working so hard to breathe.
Yeah, that pretty much sums up our week.  It's been a rougher one.  He was actually breathing okay Monday and Tuesday, but cried a lot those nights, too.  Talk about heartbreaking.  Big sad sobs, quivering lips, pained expression.  You know, there's a difference between a mad face and a heartbroken face.  His was heartbroken.

Wednesday at school, he had a pretty bad asthma attack.  It took giving inhaled albuterol twice in 30 minutes to get him out of it.  Talked to the experts, put measures on board, and stayed home.  There really can be some great things about his machines and monitors.  Because we've got them, I've got more leeway to stay home where with another child, we'd have been in the emergency room because it's simply not safe to do so much albuterol without seeing how it's affecting the heart.

Anyway, we did okay.  In fact, Wednesday night, not only was he looking good, but he was happy, too!  Then Thursday, he did it again, in spite of the fact that we were giving albuterol very aggressively.  He got three large breathing treatments in the course of an hour, which meant it was time to throw in the towel.  

Good news is that with those treatments, and one more just before leaving for good measure, I drove him up here instead of taking our golden chariot (ambulance, you know, a ton of gold needed to ride in one of those things!).  But seriously, for those who don't know, albuterol is usually dosed at 2 puffs every 4-6 hours.  Aaron's usual emergency dose is 6 puffs.  We were doing 8.  So on Thursday, he got 32 puffs in the course of 2 hours.  Yep, not maintainable at home.

So we're here, and he's doing much better.  We've changed up some meds (again!) and also looked at ventilator settings.  You know, it IS called the "practice of medicine," and we're practicing on him.  

See, his asthma has gotten worse with the settings we changed him to about a year ago.  BUT the old settings were worse for his heart issues.  So now the plan is to keep him on his newer settings as long as he's doing well.  If he starts to struggle with his asthma, we switch back to his old settings (reset for new body weight).  Thank goodness for his awesome ventilator which will let us switch with the touch of three buttons.  The old one we would have had to go into settings and reset all the different functions.  

We're hoping to go home this afternoon.  There is (as always) lots of bugs and germs up here, and all his tests came back totally negative.  We'd like to leave while they're still that way.  

Breathe. Let go. 
And remind yourself that this very moment 
is the only one you know you have for sure. 
~Oprah Winfrey

Sunday, January 25, 2015


My little guy is growing up.  You know those little things that you sorta know are going to happen with your child?  You don't really think much about them, but it's exciting when they happen.  First lost tooth fits right in there.  But if your child doesn't live long enough to even get his teeth, he won't lose them either.

Aaron lost his first one last September, but I'm not sure I really counted that one.  I mean, the dentist pulled it in the OR.  Does that count?  Maybe.

But he's had a couple loose ones, you know, those cute tiny ones in the front on the bottom. The doc checked them when he was in a week and a half ago, and said, "Yeah, they're loose, but he's got a little while, you'll know when."  (I'm thinking, right, I only knew with my other kids when they brought me the tooth OUTSIDE of their gums.)

And hey, consistency is great, right?  I went in yesterday morning and one was missing!  I was kinda confused as to how it happened without him having an issue.  I mean, from all evidence, he does protect his airway, but a few months ago I tried to give him some cookie crumbs and it was kinda ugly.  He just didn't know what to do with them.  He gagged and choked, and had a pretty rough time.  And those crumbs were a LOT smaller than his tiny tooth.  But nonetheless, the tooth was gone.

So I figured I'd better try to pull the other one one.  After all, it had been looser than the missing one.  Nope, it was stuck in there pretty good still, so I left it alone and figured I'd try again today.  Well, like his sibs, he apparently wanted to take care of it on his own.  Sometime during the night, he was chewing on one of his blankies, and his nurse noticed that there was a lot of blood.  Yep, he took care of it, again!

Then this morning, when changing his clothes, I found two tiny pearly whites, sitting underneath him in his bed.  So mystery solved.  Somehow, he got them out, and out of his mouth without swallowing them.  Now, if I could only convince the tooth fairy to show up.  (He's kinda been MIA for the past several years, lazy mama.)

Anyway, on other fronts, Aaron is doing REALLY well.  (I do say that with a tiny bit of trepidation.)  He's almost completely off his oral steroids, just a teeny, tiny amount today and tomorrow.  He's also now on his inhaled steroids and is using his frankincense oil lotion.  And he's on ONE TO TWO LITTERS of oxygen.  He has been for several days now.  I honestly can't remember when he's needed so little.  Plus, his heart rate and respiratory rate are lower than we've seen before.  All really good signs.

A couple weeks ago, I had dreams about him dying, then not dying, then in a lot of trouble in some strange hospital and I couldn't find him.  (My husband pointed out that this was my version of the "end of semester I forgot to go to class, it's finals time" dream.  He's right, and it helped to have that pointed out.)  But then it was followed by that awful week.

Last night, I had a different dream.  I was carrying Aaron around and I had been for quite a while.  I realized that I probably ought to be heading home, but was a little confused about why I needed to.  Then I realized/remembered, that he wasn't on a vent, and hadn't been on his oxygen for "a while," and while he was looking really good (in my dream), it was probably time to be near his oxygen again.   No, I don't think these dreams were harbingers of things to come, but oh, I sure enjoyed last night's more than the one two weeks ago.

Hope springs eternal.  I'm hopeful that we've got some really good days ahead, time where we can make progress of reducing some of his supports, increasing his heart and lung health.   A pretty different outlook from just a few weeks ago.

God sends the dawn

that we might see
the might-have-beens
that still might be. 
~Robert Brault

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."

Sunday, January 11, 2015

Tender Mercies

Aaron is still on the mend, a little better every day.  I did keep him home from school Monday and Tuesday, but he went back on Wednesday.  Funny kid thinks he's in high school.  He managed to fall asleep at school all three days he was there!  Told him to stop trying to catch up to his big kids.

He finally got himself a haircut last night.  I mean, these curls were getting really impressive, but there are a couple of challenges with that.  When you spend the majority of your time lying on your hair, it gets pretty tangled.  And it also causes interference and feedback with his hearing aide, so yeah, it was time for a trim.

Not his favorite thing, especially when it's followed by a bath.  Poor kid was just all tuckered out afterwards.

He does have a blast with his Christmas present though.   They say it's the simplest things that are the best, and it doesn't get much simpler than some PVC pipe and connectors.  He loves to get those toys swinging, and it's also motivating him to move around his bed more.  Big grins!

This weekend I finally came to the conclusion that I needed to leave some excess baggage behind.  I actually belong to several support groups, groups that I've gotten a lot from, and I hope, given a lot to as well.

There are a couple of local groups, some Trisomy groups, a couple trach pages, a vent page, a heart page.  Well, you get the picture.  They each have their own niche, but in each, I also felt like I could be me.

However, one that has been near and dear to me has been changing a lot.  There are lots of new "rules."  Like, "no religious discussions or posts" which has been interpreted as, "no religion." If a group member has any extra supplies, they can't decide to give them to someone else, they have to turn them over to an administrator to deliver them.  Group members can't ask questions for anyone else except the child that's involved.  They can't put up anything remotely political.  You can't talk about another Facebook page on there.  And so on.  It's gotten to where I felt like I couldn't put up anything, especially my blog, because somewhere in what I say, something's going to cross the line.   And if a post "crosses a line," it's deleted.  Even posts where members say they're moving on are deleted.  I finally decided that it was too painful to continue being part of it.

But leaving was painful, too.  It had been a good fit, for quite a while.  Parents on there "get" that it's hard, but good, parenting a special needs child.  And I met (yeah, actually literally met in person!) several friends on there.  I had an emotional investment in it, time, energy and a lot of love.  So it was hard, even if it shouldn't have been.  And I was struggling.

But then on Saturday, a sweet package came.  A friend, whom I haven't seen in over 18 years, sent me a present.  She told me she had a "little something" she wanted to send me.  That "something" turned out to be a "hug" that she had crocheted.  It came at the perfect time.  She told me she had made it for me and prayed and loved me with each stitch.  Perfect timing?  A tender mercy?  Absolutely.  I needed that hug, and I needed it this weekend.  What a blessing.

"The tender mercies of the Lord are real and that they do not occur randomly or merely by coincidence."  Elder David A Bednar 

Sunday, January 4, 2015

Merry Christmas! (and a Happy New Year)

I'm sitting here in a very quiet house, even a fairly clean house.  We put the Christmas decorations away yesterday, and it's a little unreal.  By New Year's, I've always felt very ready to have my home "back" again.  But this year it went up late ('cause we were at the hospital) and Christmas was late, too (see the above reason!).

So New Year's Eve became Christmas, New Year's Day was Christmas and New Year's Eve, and Saturday, two days after "Christmas" we took everything down.  It felt kinda fast.  But I have to admit, it's nice to have things back to normal, whatever that is.

This year, we did a lot of homemade gifts.  (Side benefit of being in the hospital, more time for crocheting.)  I didn't realize that my girls were doing the same.  The love that goes into each stitch, each carve of the knife.  What a blessing to be able to focus on one person and pray for them as you work on something special.

This past year has been a rougher one for Aaron.  We managed to stay home from the hospital in January.  In fact, we went in to the ER and managed to come HOME again that night.  (I think we did that twice this year, amazing!)  But in February, he picked up a flu-like virus and ended up in the hospital.  As soon as we could manage it at home, we checked out so as not to pick up something else "wonderful."

Three Minion hats for a niece and two nephews.
30 bears for Grandma Wiess for her 30 grandcubs.
A bed frame for Aaron's toys (a favorite)!
Five Minion hats for the minions around here.
Two scarves for two beautiful daughters.
31 angels for Gramma and Grampa Brown for each
of their grandchildren,
And a family name for another sister-in-law.
We skipped March, but the beginning of April, and again over Mother's Day, Aaron got sick with rhinovirus, and we checked into the "Hotel on the Hill" (Primary's) for a week both times.  I officially HATE rhinovirus.  I know, no one likes the coughs, runny noses, yucky feelings.  But for Aaron, it truly is life threatening.  I mean, you may feel lousy while trying to breathe through it, but I'm pretty confident that your oxygen sats are still well into the mid to high 90's.  Aaron, he likes to hit about 70.  And if we'd let him, I'm guessing he'd drop further, too.  But before he gets that far, we're forcing 100% oxygen into those tight, sick, oh-so-frail lungs.  But good times, he did well, recovered, and came home. Both times in record time.  So hey, it's improvement!

June was a really fast trip, only a 14 hour admit!  But it was scary, too.  He had a massive asthma attack that I didn't recognize in time to get ahead of it.  It was ugly, 'nough said.

Beautiful creations by our girls.  One did our
family tree in cross stitch and the other carved
soaps for each one representing an interest.
July, August, September and October were just "normal" months.  (Whatever that is, normal is a setting on the washing machine, right?)  He went to parties, parades and started school.  He even went out trick-or-treating on Halloween!  Fun times, fun memories.

November found us back in the hospital with, wait for it ...  yeah, rhino, again!  This time he actually did really well.  It was mostly a watch and wait for him to get back 'cause he was in sorta okay shape when we got there, but hadn't hit the peak yet.  We were very aggressive with his care and managed to work through things pretty well.

I guess he took that as a challenge though, or maybe he wasn't back up to speed yet just before Christmas.  We lifeflighted in two days before Christmas, and it was a really rough go of it for a day or two.  Not rough as in "we'll be needing to do a little extra here."  Rough as in "don't you dare give up on me yet, child."  I don't remember ever seeing him as sick as he was this time.  I know we've never needed the amount of support they put him on.  I don't know what to say except that I'm so grateful for prayer and for his fighting spirit.

Which brings us to today.  He's doing better.  He came home much sicker than he has before because we were trying to get home for "Christmas."  He's still be on more of his asthma medicine and more often, than he usually is.  But yesterday, we pulled back to his normal "sick" schedule.  And today, we're going to try just let him tell us if he needs it.  Scaling back, it's good.

He's now on house arrest except for school and doctor's appointments, and if the season gets much worse, we may revisit that as well.  Love my bug.  Gonna do all we can to keep him healthy.

Whether we want them or not, the New Year will bring new challenges; whether we seize them or not, the New Year will bring new opportunities. ~Michael Josephson