Friday, October 30, 2015

All I Want for Christmas Is...

My Two Front Teeth!  Yep, he's lost 'em.

The first one got pulled in the OR a year ago.  The new one hasn't grown in yet.  The second one has been getting steadily looser.  When we saw the dentist this week, she said they'd pull it if he still had it when he goes in for his cleaning.


I guess he wasn't having that.  He lost it yesterday.  My funny gap-toothed kid.


That's six now he's lost, at about the age when his olders were losing their first.  I guess he thinks he's got to hurry and catch up with them.



And just for giggles, a funny video from PT (physical therapy) last week.  He wasn't too concerned on working in the gait trainer, but he sure had a lot of opinions he wanted to expound upon.  He's definitely my kid, through and through.

video

Life is like a mirror, we get the best results when we smile at it. ~Author Unknown

Wednesday, October 28, 2015

Surgery It Is

Yep, that about says it.  Sometime in the future, probably next few weeks, Aaron will be heading into the OR again.

He's certainly been there before although not as much as some.  Of course, that's in part due to us piggybacking as many surgeries into one trip as we can.  And so far, we're looking at at least three things.

The reason we're doing it sooner rather than later are those darn ears of his.  Our visit to the ENT last week showed that he doesn't appear to have an active infection anymore, (YEA!!!) but his left tube is sitting ON, not IN his eardrum, and we can't find the right one.  Given that this kiddo comes up with an ear infection every six to eight weeks, well, he needs tubes.

He'll also have a dental cleaning.  Now, I don't know about you, but I think I would be okay with going under general anesthesia for my dental work.  Somehow, I haven't been able to convince anyone that it should happen that way for me.  But they're totally on board for Aaron.

These two really are easy peasy.  He doesn't even have to be able to breathe on his own afterwards.  Ventilators can be really handy things.  We usually start a timer as soon as he leaves the OR and we're on our way with walking papers after the minimum required time.

Except I said we've got three things on the docket this time.  Yep, one more.  They're going to fix the notch in his alveolar ridge.  That's the bone that makes up your upper gum in your mouth.  He's got a gap there.  It's been kinda handy.  Perfect place to stick his finger in his mouth.  Except apparently, that bone helps keep your face from collapsing, like a keystone in an arch.  And he's missing some of it.  I had noticed that it was smaller than before, I guess because it's coming in on itself.

So they'll use something called "bone putty" to close it off.  It will work better than a bone graft from his hip, and has the added benefit that we won't have a second surgical site to deal with.  I'm told it's same day surgery, but he'll be really swollen afterwards, and it will be about a six week recovery.

So there's a lot going on.

And to top it off, he's still trying to overcome the pneumonia and the bacteria he grew out back in September.  Remember when we spent Thursday of Fall Break in the ER?  Well, I figured this time I'd misread things.  Apparently he didn't really need to be seen.

Except it turned out that he did.  He continued to struggle through the weekend.  Not really bad, but not his normal self.  He couldn't be off the vent at all and we were using yet more oxygen.  Plus the "junk" in his trach was turning some interesting colors.  At least interesting in an academic sort of way.  Not so interesting when it's your kid and his health, or lack thereof.

Monday morning I got a call from the ER doc.  Yeah, the doc.  Not the secretary, nurse or even intern.  They took a sample from down in his trach on Thursday and it was growing massive quantities of bacteria.  So back on antibiotics he went.  We're almost done with them now, and I'm hoping, HOPING, that we can have a good long stretch of health here.  We're due for it.

Plus doctors really don't like taking people into the OR who've been sick recently.  And when it's a pneumonia, they like a good six plus weeks.  We need the surgery, we need the health.  They kinda go hand in hand.

So onward and upward we go.  And aren't we lucky to get to enjoy these smiles?  Such a blessing this kid is.

I learned a long time ago that minor surgery is when they do the operation on someone else, not you (or your kid). 
~Bill Walton

Sunday, October 18, 2015

Hedging Our Bets

I like to think I'm a faith-filled person.  I rely on God.  I believe in Him, in His goodness.  But I also think He requires us to do what we can to improve our lives, or avoid trouble.

For example, I taught my kids you don't play in a busy road.  I encourage them to get enough rest and eat right.  We brush our teeth (I know, crazy, right?)

We have documents ready with all of Aaron's medications, normal vital signs, trach and vent specifications, etc.  And we have measures in place with each school for our other kids if things go really, really bad.

When we had to take our car in for repairs, I grabbed Aaron's car seat.  No, we weren't planning on needing it, but I worried that if I didn't have it, he'd decide to go south on me.  (Okay, that is a little on the neurotic side.)

And we get our flu shots!

Now, I've heard it all, and yes, I'm well aware that last year the vaccine didn't cover the most prevalent strain.  Believe me, it came here.  I KNOW.

But we're hedging our bets here.
 And I believe the scientific community, and what's more, I believe my doctors that getting the flu shot annually decreases our chances of catching the bug.

Contrary to what some people believe, the flu is not throwing up and diarrhea.

It's high fever, body aches where every movement hurts, coughing and coughing and coughing, headaches.  Basically, feeling like your whole body is betraying you and wondering how long you can possibly endure it.  And that's for otherwise healthy folks.

Then there's Aaron.  You know that cold that makes you a little miserable?  Yeah, it puts him in the ICU fighting to breathe.  So I will do ANYTHING that might even think about preventing him from getting sick.

Including telling people that they can't come in our home without having had a flu shot.  And hauling my boys in for their own over Fall Break.  Yeah, I can hear it now.  "So what'd you do on Fall Break?  We went camping, to Disneyland, hiking, etc."  "Us, we got shots."  Oh well.

Please, please, please, if you're going to be around us, PLEASE get your flu shot.

We already had some "fun" this week when I wondered if he was getting sick.  He'd been running low fevers intermittently and was higher on his oxygen, with "junk" coming out of his nose and trach.


So we spent Thursday in the ER at Primary's.  Good news (and it IS good news) is that he had rhino again.  Better news is that when they asked what I wanted to do, I said, go home!  Because he was still well within what we could handle here.  And he's recovering well, just not able to be off his vent at all yet.

Please help us keep our happy bug happy.  Sick is no fun at all.  And well, we're not going to even think about what we deal with beyond "sick."  And isn't it a lot more fun to see pictures of him laughing and playing, then lying miserable in a hospital bed?

"He who cures a disease may be the skillfullest, but he that prevents it is the safest physician."
Thomas Fuller 

Tuesday, October 13, 2015

No Answers Yet...

We don't have any answers yet.

Yesterday I got a call from our ENT's office.  They had the notes and wanted to put him on penicillin.  Which would be great if it worked.  It won't.  I asked her to double check the sensitivities again, because I was under the impression that there were no oral medications that would work.

Thank heavens for a frustrated pediatrician last week who went over everything with me.

The report was worded in a confusing way, and at first glance, it did look like there were some that wouldn't work, but others that would.  And again, I mean, it's an ear infection!   Really, those should clear up with almost any antibiotic.

When she reread it, she realized that wouldn't work and sent it back to the ENT to review and called me back today.

For now, we're going to be doing vinegar rinses to try to clean it out.  Nope, probably not going to fix everything, but it won't hurt it.  And vinegar does have some antibacterial properties.  Then next Thursday (9 days from now) we'll head on up for a look at things.  He's booked way out, but they're double booking us on this one.

And Aaron?  Well, there's "something" going on.  He's not tolerating being off the vent quite as well. His heart rate has been a little higher. And on Sunday, he ran a low grade fever and was really miserable.  Like, every time I shifted him in bed crying miserable.  Let me tell you, my mind went places no mama's mind should ever have to go.  But he weathered the night well, and he was happy again on Monday.

A small part of me wants to believe he just wanted to play hooky from school.

But he's more "mellow" than usual, and sleeping a bit more than he has been.  I'm pretty sure it's the ears.  After all, pain is exhausting, and ear pain is just plain awful.

So we're hoping.  Hoping that we can come up with a good plan to keep this in check.  Can I say, I'm really not a big fan of an antibiotic resistant bacteria being loose in my little guy's body.  But if we can keep it to a colonization level and not an active infection level, well, I guess we'll go with that.

I woke this morning to a picture on my Facebook news feed of a kiddo who had gone in for a fairly straightforward surgery yesterday.  He won't be struggling with the recovery, but his family sure will.  Another little guy, T18 like Aaron, is also having a really rough time up at Primary's.  Tomorrow isn't a given.  Not for them, not for us, not for anyone.  Savor your children.  Be there,  Love them and make sure they know it.

Make the most of your time with others.  Now is all we're guaranteed.

"Spend the afternoon. You can't take it with you." ~Annie Dillard

Friday, October 9, 2015

Sticking my Head in the Sand . . . It's Easier That Way

I've decided I'm going to ignore the medical world and stick my head in the sand.

I got a call from our great pediatrician today.  He's awesome, but he's stumped, and I am, too.  When we were at PCH, they cultured the drainage from Aaron's ear and sent it off for testing.  They FINALLY have it back, plus the susceptibilities.  That's the good news.  The only good news.

This particular bug is not susceptible to ANY oral antibiotics, and just forget about the topical ones we usually use to treat his ear infections.  That's NONE, ZERO, ZILCH, NADA.  Oh, some IV ones can take care of it.  The really big guns like vanco and gent.  But really, IV antibiotics for an ear infection?

Plus, remember back in April and May when he had that lovely C.diff?  Well, that can flare up just about any time now if he's on antibiotics.  The stronger they are, the more likely.  

So we have the fun of antibiotic resistant bacteria (yep, that's exactly what it is) plus an antibiotic caused inflammation just waiting to erupt.  'Cause we just know how to have fun around here.

Anyway, so I'm going to just pretend, for a little while at least, that none of this exists.

No worries about Aaron.  He's had his "toys" around long enough that they're just part of the landscape, just what we do.

But we're going to go to the football game tonight, and hope Lone Peak slaughters the opposition.  I'm going to watch as my sophomore takes the field with the marching band at halftime, and then enjoy the other part of the halftime show where he will be back on the field, along with my senior and all the spirit teams dancing.

Then tomorrow, we're going to try to get the house clean, go cheer on some kids with soccer, and then head to church on Sunday.

Unless someone calls me about medical things, I'm not calling them.  And I'm not going to think about it until at least Monday, and maybe not even then.

We need a break around here, and so I'm going to make one.  And it's going to be good, 'cause I said so.


"Each person deserves a day away in which no problems are confronted, 
no solutions searched for.” 
― Maya Angelou


Friday, October 2, 2015

Jumping Back into Life

Hanging at the soccer field,
cheering big brother and breathing
on his own.






He's been home for a week now, and we're trying to cram as much as we can into this last little bit before the weather changes.










He came home and went to a Disney concert.  We claim Chicken Little, right in the middle in the jeans shorts and yellow shirt.

I think this is one of my favorite concerts, and Aaron LOVED the music.  Rocking out and grinning just like he hadn't been discharged earlier that day.

The weekend found him watching his brother's team cream the opposition (9-0).  All the while, he was working out as well, breathing without any help from his ventilator.  (Which of course was with us, just not turned on.)

Church on Sunday was the Primary program.  Each year I think, well, maybe next year he can be up there with all the kids.  But each time, something stops me.  This year it was the minor detail of him having been in the PICU one week before, and just discharged three days earlier.  Just a little bit leery of having him in such close quarters with so many children.  But it was a wonderful experience and again, no ventilator.


This week he's been to a marching band show where another brother plays the baritone for the Lone Peak Marching Knights.  Again, he LOVED the music.  This mostly deaf kid gets so much enjoyment out of music in his life.  So much fun to watch him.


It was a beautiful night, the weather couldn't have been better.  He's been doing so well with his breathing.  Some days he's done eight to ten hours, once he made it 12 before we put him back on the vent.  Today and yesterday were a bit less, more like six.  But still, six hours.  One of the doctors in the PICU actually got teary when I told her what he'd been doing.  This was not something that was "supposed to happen."

A few years ago when we were in, I told them my plan for weaning off the vent.  She was part of that group.  They kinda looked at each other and shook their heads.  I could almost hear them thinking, "we thought this mom was well-grounded in reality, I guess not."

Wednesday, sadly, he attended a funeral with me for a dear neighbor.

Later that day, he got a fun package from an adopted "grandma" in Australia.  She sent him a bunch of story books, a calendar, and some cute cut outs of animals.

 Then yesterday he had an appointment for some leg braces (DAFOs).  They'll help keep him from hyper-extending his knees when he uses a gait trainer.  Poor kid was a bit nervous about that one.

See, usually when someone is looking at and pressing on his feet, the next thing that happens is a tourniquet is wrapped around his calf and a needle is poked in, and dug around with in his foot.  Not a pleasant sensation.  But he held it together, probably a whole lot better than I would have.  His eyes were big, and he was tense, but there were no tears.  I think I would have been a blubbering mess.

Anyway, we're trying to get as much in as we can before bad weather shuts us down.  See, not only is it really hard for me to lift the wheelchair in and out of the back of the car, but loading and unloading him into the chair exposes him to the elements for a five to ten minutes each time.  That's just too much if it's raining or snowing, or even if it's really cold.  And that means, literally exposed.  Door open, moving him, moving his equipment.

So we'll make hay while the sun shines, and see as much of the world (or our little corner of it) as we can.  Love that wherever he goes, whatever he does, he does it will a great attitude.  And he shares it so it can rub off on the rest of us, too.

Don't be fooled by the calendar. 
There are only as many days in the year as you make use of. 
~Charles Richards