My Son

I'm not quite sure where to take this.  (I know, you've heard that before.)

This week has been quiet (relatively speaking) on the homefront.  Aaron is home, yes, still.  (Big grins.)  It's been over three months since his last discharge.  William told me not to say that, why did I have to say that??  But it's true!  And it's worth noting and celebrating.  While it's not our longest break (yet), it's been quite a while since we've gone that long without a stay at the "hotel on the hill."

But there's a lot that goes into keeping him here, safe and happy.  And with all the noise about cuts and changes, well, this mama is a little bit nervous.  See, it's exactly the kind of support that is being scrutinized that makes his life possible.

Yes, there used to be (not long ago) pre-existing condition exclusions and lifetime caps.  And most of us really didn't give it a lot of thought.  Well, maybe the pre-existing conditions, but who was ever going to need a million dollars worth of coverage in their lifetime?  Frankly, anyone dealing with a major illness or injury.  Lifeflight can cost $12,000 to $25,000, and that's before you even get to the hospital.

There, an average ICU stay is a minimum of $10,000 a day.  That doesn't include any surgery, specialists (and yes, if a specialist looks in on you, that's a charge) or that type of thing.  If you're really critical, it's more.  There's the OR time, anesthesiologist, surgeon, assistant surgeon (yes, they bill separately) and so on.  Then there's the follow-up after discharge, any special equipment, medication, etc.

So if you end up with a few broken bones, an appendectomy, the run of the mill type of things, well, you're probably still safe.  But now throw in a premature baby, cancer, any really bad car accident or skiing accident, and you'd better worry.

Our last hospital stay, you know the one where I worked the phones so hard to get out of there sooner rather than later, well, that was a cool $100,000.  Yes, that's five zeros.  And we spent no time in the ICU.

Here at home, I do most of his cares.  Just yesterday, I spent an hour drawing up his inhaled meds and cutting the ones he takes half a time so I wouldn't have to do that while I was also working.  But he's got equipment that we will never own, no matter how long we use it.  Ventilators and oxygen concentrators are rented because then the company maintains them.  He takes between 27 and 31 doses (depending on the month) of 18 different medications or vitamins per day.  And yes, we've occasionally tried to wean him off of some of them.  It's not pretty.

This kid is expensive, with a capital E.  And thank heavens for a Medicaid waiver that helps provide for him.  It doesn't cover everything, but most of it.  It also covers his nursing.  Some states, many states, would cover him at 20 to 24 hours per day given all his medications, therapies, and interventions.  Because of recent additions to his medications, he now qualifies for ten hours a day, up from eight.  And you know, that's okay.  We can totally make that work.  I'm substitute teaching now, so I'm at work while he's at school, and he's got a nurse for that, and then we have our nighttime hours covered.

But without nursing at night, I'm not sure what we would do.  We were without coverage for eight nights this past month and it was hard, really hard.  See, among those 27-31 doses, he gets ten between the hours of 2:00 am and 5:00 am, plus a shake vest therapy.  Trust me, working a full day on either side of those nights wasn't pretty.  (And I wonder why my headaches are back?)

But here's the thing:  Aaron has worth, tremendous worth.  Just by himself, his soul has value.  And I don't think you can put a price on it.  This child, this very handicapped, limited boy, has been an influence for good for people around the world.

In the beginning, it was just our family and a few close trusted friends.  It was so raw, so painful, so incredibly heartbreaking, but it drew us together.  We rallied around this tiny unborn child and put aside our selfishness, strengthened each other, called upon God for hope.

Then he was born and word trickled out to the community, our local community, and he inspired others here.  As I reached out for support and wrote about him and our journey, others were touched.  I initially wrote on a Carepages website and titled his page "Gift From Heaven."  We outgrew that site when he was about nine months old and I started this blog.  In the past almost six years, the blog has reached I think nearly every single country in the world and has had almost half a million hits, over 16,000 in December alone.

So not only does he have worth just by virtue of his "being," he has influenced countless others. He gives hope, joy, inspiration.  And in my view, that is exactly what this world needs, someone to inspire us to be our better selves, to give to others, to smile more, love more, remember faults less and to try harder.

Coming home from school.

And Aaron?  What does he think?  Well, he just keeps on going.  This week while I was drawing up one of his medications with a needle, he reached up and hit it and sent it flying, and then laughed at me.  No, he doesn't get injections, so it wasn't going to hurt.  He was just playing and thought it was funny.

He's recently discovered his right foot.  Up until now, he's always worn socks.  For him, that's a comfort measure.  Most of the time his IVs are placed in his feet.  So if he wasn't barefoot, there was no chance for an ouchie.  But he's taking his sock off now, over and over.  And it's pretty fun.

He's been at school, where he's hit all of his IEP goals for the year, which means he'll only be in summer school two half days a week, and that for socialization.  And he still thinks that the ideal sleeping hours are 2 am to noon, just like some of his siblings.

He loves his life.  He lives it to the fullest of his ability.  And he deserves to have it supported.

A great soul, with a great purpose, can make a weak body strong and keep it so... 

~Mark Twain

Our "Ordinary" Life

I can't believe it 's been a week.  It seems to have flown by, but also like last Sunday was ages ago.

Hanging with his brother.

Aaron is doing (fairly) well.  The weather and asthma are still kicking his heinie, and we're still trying to get a balance on his digestive system and his meds.  But in between, he's laughing and having fun.
Thursday and Friday were a bit rough for him with his belly.  I picked him up at school on Thursday after I finished working, and then kept him home Friday.  By Friday afternoon, he was doing better.  Not fabulous, but much better.

Utah got nailed with snow Friday night.  As in, we had to leave by 7:30 Saturday morning so Joseph went out with the snow blower.  He finally came in and said, "Mom, I've done the driveway twice, and you can't tell I've done anything!"  Overall, I think we got about a foot of snow, and mostly between 5 and 8 a.m.

Cheering Michael on.

Let me tell ya, driving in the snow takes on a whole new level of anxiety when you also have a medically fragile, wheelchair bound child with you.  David (oldest son) suggested that was because Aaron was more important than the rest of him.  (Yes, he was joking.)  I told him, "no, it's because if we get stuck, I'm counting on you guys to be able to get yourselves out, and maybe even get the car unstuck!  The wheelchair doesn't move real well in snow."  He totally knew.  He was just trying to yank my chain.  Didn't work.  I laughed.

But that snow!  We're talking, the two-lanes each way with a suicide lane in the middle road was actually one lane each direction, and that was because we were all driving in the tracks of the car in front of us.  Believe me, I seriously considered just not going.  But I had one kid who had futsal practice (which could have been missed, but was on the way to the next stop anyway) and three who's only opportunity to recertify for refereeing next year was yesterday morning.  And since that's how they earn their money, well, going a year without a job, not so cool.  So we ventured out and made it.

All tuckered out after a long day at ballroom.

And Aaron, kind, wise soul that he is, grinned but behaved and set off no alarms.  Then that afternoon, it actually cleared up quite a bit, and since it was (relatively) warm, the roads cleaned up well, too.  So we all loaded up again for Michael's first ballroom competition.  His team did well, he had a lot of enthusiasm, and they brought home gold ribbons for their level.  And Aaron loved it.

Today, well, this morning was good.  He was all smiles and laughter at church.  Afterwards, not so much.  He was still smiling, but once again, we were pulling out all the stops trying to keep him here at home, and I came very close to throwing in the towel and calling for back-up.  He's been getting a lot of albuterol, shake vest treatment, and tons of oxygen.  We've even bagged him a couple of times and changed out his trach.  But he seems to have pulled through whatever was bothering him, and is doing much better tonight.  Again, my money is on Utah's bipolar weather.  So much fun, right?

Anyway, he's hanging in there, being a kid, having fun with his brothers.  I think I'm writing less often because this is just our life!  It seems relatively mundane, ordinary now, and I wonder who would even want to know.  But that right there, ordinary, just life stuff, that is a miracle and a blessing in and of itself.  And I'm so grateful.

Time stands still best in moments that look suspiciously like ordinary life.

Brian Andreas

Thrown For A (Promising) Loop

I'm sorry for not updating sooner, especially after last Sunday's post, but I've been working full-time and also trying to process my thoughts.

See, last Sunday, along with everything else I wrote about, I was revisiting the (very incomplete) funeral plans I've thought about off and on for almost seven years now.  It's less than a month until the seven year mark from when we were told our baby was not likely to ever live, ever at all.  That coupled with all the challenges we've had with his oxygen brought it all back to the forefront of my mind, and I was reviewing what I do have.  Vague plans, some ideas, but yeah, they're written down.  Some may think that's morbid.  Really, it's just our reality.

Anyway, so we had our cardiology appointment on Tuesday, and I will freely admit, I wasn't looking forward to it.  I mean, if it didn't happen, they couldn't tell me bad news, right?  But we went anyway, just not real thrilled to be there.

And Dr. D. threw a curve ball, a big curve ball.

"So how about setting up a heart cath to see what needs to happen to make him a surgical candidate?"

What???

I didn't think that could ever happen.  But Dr. D. thinks that if we do a two-step process, it might be an option.  There are a TON of challenges and complications, and that's IF his pressures are determined to be safe enough.  It's two heart surgeries, several months (at least) apart, and the second is open heart.  It's risky for a typical kid (yeah, there are typical kids born with holes, too).  It's exponentially more risky for him.

First they would go in and put a band on his pulmonary artery to restrict the amount of blood that is allowed through to his lungs.  Right now, the lungs get way too much, which causes them to stiffen, yeah, pulmonary hypertension.  This would decrease that.  Then, when the pressures drop enough, they'd go in and close the hole in the lower chambers of his heart.

See, the meds he takes do a (somewhat) decent job of mitigating his pressures, but the VSD (hole in the lower chambers) is the cause of it.  As long as we treat symptoms but not cause, it's going to get worse.

On the other hand, if we do nothing, it progresses.  But according to Dr. D, baring anything else (and there are a TON of "elses") with his pressures increasing, he could live into his 20's.  Seriously??  20's???  The oldest living boys I've heard of with full T18 both died at either 18 or 21 (differing accounts).  When I pointed out that each med had only bought us three years and we were out of options, he said that was only three years with sats in the high 80's, low 90's.  But what would happen is that his sats would slowly, slowly drift down until they could no longer sustain life, but that was still many, many years off.

Now, like I said, there are a lot of other "elses."  Plugs, viruses, other illnesses, they all can and do rear their ugly heads.  In the past week, two young men who are local to me lost their lives to viruses, and then there was my friend's daughter just before Christmas.  Like I said, it's our reality.

But to go from revisiting and revising funeral plans to being told that he could be expected to live for another 15+ years, or even longer if he could have and tolerate the surgery?  Well, it's a little mind bending.

In other news, he's done pretty well this week.  He did come home from school early on Friday because he was having tummy trouble, but he's recovered well from that.  Earlier this week when we didn't have a nurse, he actually slept all night.  Of course, on Thursday after I'd worked all day and had another full day's assignment on Friday, he chose not to sleep.  Oh well.  I've kept him up and out of bed today in hopes that tonight (nurse-less again) he'll cooperate.  If not, I guess I'll sneak in a nap.  Since I'm subbing now and there's no school tomorrow, I won't be working.  Either way, we'll make it work.  And, heaven willing, look forward to making it work for a long time.

Always look on the bright side of life. 
Otherwise it'll be too dark to read. 

~Author unknown

One of "Those Days"

The super cool shirt one of his brothers
got him for Christmas.  I think it says it all.

It's been one of "those days."  Ups and downs and all arounds.

Got woke up at 3 this morning by my nurse.  He was desatting into the 70's.  Yeah, the fun begins.

He's been struggling more the past couple of days, but I was also remembering that for some reason, January and February see him struggle more with his asthma.  We've been doing extra albuterol (all-better-all) treatments, and seeing some success.  Got him back to where he belonged, and went back to bed.  The rest of the night went pretty well, but he was still needing ten liters of the good stuff.

So we stayed home from church.  During church time, he did amazing!  Actually got down to six liters for a while.  After church?  Well, not so much.  It found us bagging him, again, because 15 liters wasn't doing it.

I wavered.  Do I throw in the towel and call for back-up?  We changed out his trach, nothing.  Did several breathing treatments and bought a little bit of space.  But I did pack my suitcase.

But here's the thing, he looks soooo good!  I mean, through this all, he's laughing at us and pulling at his tubes and things.  His sats are down in the low 80's, high and sometimes lower 70's, but he's giggling!   I mean, how do you call 911 for that?  And yeah, it wasn't just the monitor.  Capillary refill on his forehead corresponded with his machine.  It was real.

This is him getting his treatment.  How do you call 911
when you're dealing with a kid this goofy and happy?

I did discover a lot of blood inside his left ear, probably another ear infection, and cleaned that out really good.  He's doing better since then, but really?  An ear infection?  I can only hope it's that simple.

Sleep (and breathe!) peacefully little man.
Sweet dreams.

But when he's struggling, my mind goes places I don't want it to.  I told William it would almost be easier if he was sick.  Then I'd know it was something we needed to work with and support and get through.  Mentally and emotionally, it's much harder when I can't see a reason for him to be struggling.  I remember that whole "progressive and nonreversible lung disease" thing, and try to ignore that he's on a lot more support than he used to be. I try to distance myself from reality, asking questions like, "if I ignore his sat monitor, will it stop beeping like a child throwing a tantrum?"  No, I know it won't, but then that never worked with my toddlers either.

So here's hoping it was that ear.  It wouldn't be the first time an ear infection masqueraded as a heart or lung issue.  (There are a couple posts about that in 2013 here and here.)  We have no nurse tonight or tomorrow night, so I'll be watching him extra close.  He does have a nurse coming in for school tomorrow, although the jury is still out on whether or not he'll go.  If he continues looking well now that I've cleaned out his ear, I think he'll be on the bus.  If he struggles more tonight, well, nope.  But he loves school, and it does him good, (really, it helps him physically) to go to school.  So if we can make it happen, we will.  Besides, I'm supposed to be subbing tomorrow myself, and it's not a good thing for the sub to call off.  And we also have an appointment with cardiology on Tuesday.  Trust me, ain't no way we'll miss that one.

But right now, he's sleeping, peacefully in his own bed.  And even though I won't sleep in my bed, I'll be in my home.  I am grateful.

Visit [him], gentle Sleep! with wings of healing, And may this storm be but a mountain-birth, May all the stars hang bright above [his] dwelling, Silent as though they watched the sleeping Earth!

Samuel Taylor Coleridge

How to Extend Christmas Break

Christmas has come and gone and so has the New Year's Day.  All the decorations were put away, and (eventually) all the regular stuff brought out again.  (I had a sign that goes over the front door go AWOL for a while.)

In the morning, pre-Tylenol.
Just not a happy camper.

And Aaron decided that he hadn't had enough time off of school.  He came down with what looks like a tummy bug Sunday night.  I'm grateful that's all it was, because the way he was acting, I was hoping it wasn't influenza.  (And YES, he had his shot, back in September.)

He spent most of the night and into the morning Monday throwing up, or at least trying to.  Because of a surgery he had at four months, he actually can't throw up.  We have to open his g-tube extension and vent it to relieve the pressure.  But he can and did retch, and the food I gave him at 11 p.m. was still in his stomach at 5 a.m. (TMI?  Sorry.)

Asleep, breath rate of 36, heart rate of 120,
sats 90, on TEN liters of O2.  Not cool.

And then the diapers, and the low grade fever, and just being miserable.  Plus the oxygen, and more oxygen, and some more on top of that, just for fun.

I started running Pedialyte in hopes of maintaining his hydration and threw on a bunch of breathing treatments.  With this kid, anything that is a problem also causes problems for his breathing, and I mean anything at all.

I'm grateful for our big M-90 oxygen tanks.  The concentrator just wasn't cutting it for most of the time.  He was needing 12 to 15 liters of oxygen through his vent, and twice during the day, once in the morning and again in the early evening, that wasn't enough either.  We had to bag him on eight liters just to maintain his sats.  In other words, our home ICU was up and running.

Afternoon bagging session, and grins.

But once we got through the morning (and gave Tylenol) he was happy, so happy.  I mean, does this kid look sick to you?  And I had a hard time justifying taking him to the hospital as long as I could bring him back into where I could maintain him.  I mean, for a virus, all they can do up there is support him, and if I can provide the needed support here, so much the better for everyone.

But yeah, it did get him out of school for today.  All the others are gone.  Deborah's moved out, Mary, David and Jonathan have gone back to college (even though they don't start class until next week).  And of course Matthew is in Canada.  Joseph, Andrew, Michael and Aaron are the only ones left at home.  I know for some that seems like a crowd.  Here it seems pretty quiet.

Aaron's Christmas ornament this year.

But not too quiet, for which I'm grateful.

Sanity may be madness but the maddest of all is to see life as it is and not as it should be. 

~Don Quixote