Could He Walk??

First off, for those who are concerned, we did get lab results from last nights ER visit back, and so far, nothing is positive.  Which certainly doesn't mean he's not sick.

His white blood count is pretty high so he's fighting something.  But he doesn't have pneumonia, or RSV, or our nemesis, rhino virus, or any other of a number of nasties they test for.

He's been home today, and we've continued to be really high on oxygen and pulling yuckies out of him.  But there's no IV, no hospital ventilator.  And best of all, we're HOME (and hoping to stay here).

But last week, I borrowed a contraption from a friend to try out.  It's called an "Upsee".  So tonight, when he was happy and doing better, David and I got it out.  I can tell from the pictures, we don't have it quite right.  He's not supposed to be tipping forward at all, and his pelvis should be farther forward.  So we'll have to adjust the harness some more.

But he did seem to have fun, even if he wasn't bearing weight much.  But a few times, I could feel his muscles turn on and him pushing down.  Which is HUGE.

See, when that cute tiny baby pushes up and you support him, he's not just having fun.  He's also seating his femurs further into his hips. He's not only building muscle strength.  He's building bone mass, too.

Yeah, all those things Aaron doesn't do.  If you try to pick him up and put his feet down, he thinks it's a funny game.  "Just how long can you hold me up?"





And kids like him have been known to break bones, just through normal range of motion movement, or dislocate hips, because they're simply not strong enough.




But I'm hoping that if we make it a game, and if he can move around, he'll develop an interest in using those legs.  And doing so won't only increase his bone and muscles in his legs, it'll increase his lung health, too.

And frankly, the last time I got a look at his leg bones, well, they don't look like they'd support a sparrow.  So here's to helping our little sparrow soar more like an eagle.  The goal is to use it nightly for a couple of weeks and see if we can see progress.  And then I guess we'll go from there!

Listen to the musn'ts, child.

Listen to the don'ts.

Listen to the shouldn'ts, 

the impossibles, the won'ts.

Listen to the never haves,

The listen close to me...

Anything can happen, child.

Anything can be."

Shel Silverstein

Sometimes Reality Stinks

This kid hit the jackpot.  Last week a friend
gave him 13 size 5 onsies.  Big onsies are
considered "special needs" 'cause most kids
that size don't wear them.  And like anything
else "special needs" there's a crazy price tag
on them.  He is soooo much more comfy!

Thursday, May 21st, 2015

You know how you're going along, everything is great, and then something smacks you upside the head?

Yeah, just had one of those.

Aaron's been doing well, and I've been enjoying (okay, mostly) the month of May.  Around here, May is much busier than December.  We had choir concerts (yes, multiple), band concerts, ballroom concerts.  There were grade school and special needs school performances.  Final soccer games (again, multiple) and soccer tryouts.  Job interviews (not me), and just the normal everyday goings on.  And it has been good.  I enjoy watching my kids enjoy what they're doing.

Plus some fun times for me, including a great Heart Moms lunch last weekend.  There was a new mom who sat between me and a friend of mine.  My friend's daughter has Trisomy 13, and while she turns nine the week after Aaron turns five, her life expectancy is pretty much the same as his.  In other words, they've already outlived more than 95% of their peers.

This new mom asked us how we dealt with it, knowing our child had lived longer than they were "supposed to," knowing that we have no idea how long we have with them, and knowing that unless something happens to us, we will be at their funerals.

We told her we don't think about it.  We shove it in the back of our minds, way, way back, and leave it there.

But sometimes, it creeps out. And sometimes it charges out.  Tonight it was somewhere in between, and I don't even know if it's really "something" or not.

We were at the band concert, and Aaron was with us.  When the Jazz band started playing (and they were really good!) Aaron got startled.  But he was a little off before, too.  But his body started jerking, and spasming.  And it continued, even when I took him outside.

Was I seeing seizures?  Maybe, possibly.  I know it sure brought back what the future will bring in spades.  I decided to just get him home and watch.  Whatever it was, and it continued all the way home, stopped once he got in bed, thank heavens.  We don't have a seizure protocol or seizure meds.  Our only option if they continued was to call in help.

Here's hoping for a quiet, restful night.

Friday Morning:
Aaron did have a very calm, quiet night.  I did a little research and yes, being startled, especially by a loud noise, can bring on seizures if you're prone to them.  Many, many kids with his challenges have them and there have a been a couple times over the last few weeks where we thought he might be having one or two.  We're going to have to look into this.

Reality is too much to take in heapfuls, 

but sprinkle it sparingly upon life's path and most can tread it lightly. 

~Terri Guillemets

Mother's Day.  Love it or hate it, aching or being pampered, it's here.  And this year, we're at home.

I'm so grateful for my children, those people (some of them not so little anymore) who made me a mom, made me who I am.  Next to my own parents, they've shaped my soul more than anything else in the world.

My mom, who seemed to feel like she didn't quite measure up, but did, really did measure up and then some in every way that mattered, and many that weren't so important.  She raised six kids who bless others' lives, who strive to live true to values, who get goofy and love to be together.  If that's not the way to measure successful motherhood, I don't know what it is.

But I have to admit, my heart is heavy today.  Anyone who's ever read my blog knows I know way too many angel moms.  Not that I don't love them all, not that I would want to give up my association with any.  Just that I wish their angels were still earth angels.

And yesterday, I discovered another.  I felt so glad to have been able to alleviate some trach fears last week, to offer support, both now and for when this family would take their child home.  I'm not sure what happened exactly, but yesterday, this precious angel went Home ahead of the family.

Hug your children, cherish them, smell them, cuddle them, laugh with them, cry with them.  It can end way too soon.

I'm not into sharing videos much, but here's a couple.  One for the moms who don't feel they are "enough."  (Doesn't that kinda seem like the definition of "mom"?)

You are enough.

And one for anyone who's ever said good-by, good-by for school, for a mission, or a much, much longer, more painful good-by.  If you really want to explore further, follow the link to the making of "Homeward Bound."  Just make sure you've got your tissues close by.

Homeward Bound

My mother friends, both with earthly and heavenly angels, you're all in my prayers today.  I know how hard today can be for some, and can only imagine for the others.  I love you.

The moment a child is born, the mother is also born. 

She never existed before. 
The woman existed, but the mother, never. 

A mother is something absolutely new. 

~Rajneesh

Going Home!

We're bustin' outa here!

He had a good night and he's on the mend.

AND we have a culprit:  Norovirus 2, the bane of cruise ships.

So while we managed to keep him from giving C.diff to family members, apparently we didn't keep him from getting what was going around the house.

But it's okay now.  He'll finish recovering at home, we're almost there.

So grateful.

Praise the bridge that carried you over. ~George Colman

A Child's Prayer

Sleeping, but notice all the toys he's been playing with today.

I know there have been so many, many prayers offered on Aaron's behalf, not only over the past few days, but also over the past five-plus years.  And I think that prayer, faith and love are why he is still here with us, beating the odds, living, loving and thriving in spite of his diagnosis.

Now, before I go farther, please understand that I don't believe for one second that Aaron is more precious, or our prayers more heard than those whose children watch from above.  If love and faith could save everyone, there would be no funerals for these precious ones.  The little angels gone on ahead are no less loved than Aaron is.  Why they left and he stays, I have no idea, except that he's got a mission to perform here on earth that hasn't been fulfilled yet.

Anyway, as to where he is now, he's doing so much better than last night.  This was the x-ray we got of his abdomen about 24 hours ago.  There's TONS of air in there, and it's pushing up on his diaphragm, making it even harder to breathe.  You know when pregnant woman struggle to catch their breath because there's just no room?  Same idea.  And frankly, he looked pregnant!

His girth (measured at his belly button) topped out at 73 cm last night.  This morning it was 67.  We vented his tummy to get the upper air out, and he had a couple of diapers, one pretty big, which helped reduce his lower air.

When I woke up this morning, he was sound asleep on 3 liters of oxygen.  Yeah, I couldn't quite believe it.  He'd been on 6-10 last night, mostly on 8.

And today has been a pretty good day.  He also got to meet with some 3rd year medical students who are finishing up their pediatric rounds.  After their instructor finished showing them the features which would lead them to investigate a chromosomal challenge, she asked if I wanted to say anything to them.

I asked them to always remember hope, and that a challenges like Aaron's don't make for a bad life.  He likes his life, and he's been given the support he needs.  They don't need to sugarcoat and try to hide things from future patients, but they should give as much support as possible, give hope, and give compassion.  I will forever and ever be grateful that my doctors did this.

We also got to introduce him to a couple who is having to make a decision about traching their son.  It's hard, it's devastating, but they left with much more hope than they had.  I think staying was a good thing.

But the title, well, let me share with you a sweet message I got today from a friend. This was her son's prayer last night.

"Please, please, pretty please bless Eh-won and his tummy to feel lots more better!  And for him to poop less.  And for all the airs in his tummy to goes away.  And lets him go home soon 'cause home is good.  Thank you.  Amen."  

Her little boy knows only too well the challenges of being in the hospital, and how "home is good."  He and his family are going through their own refiner's fire.  I asked her to please tell him that his prayer was heard, and that we're planning on home tomorrow.

 The pure faith of these little ones overwhelms me.  I think that's what Christ said when he told us to become as a little child.  I pray that I can learn from these precious souls.

Heavenly Father, are you really there?

And do you hear and answer ev'ry child's prayer?

Some say that heaven is far away,

But I feel it close around me as I pray.

Heavenly Father, I remember now

Something that Jesus told disciples long ago:

"Suffer the children to come to me."

Father, in prayer I'm coming now to thee.

 Pray, he is there;

Speak, he is list'ning.

You are his child;

His love now surrounds you.

He hears your prayer;

He loves the children.

Of such is the kingdom, the kingdom of heav'n.

Janice Kapp Perry

We Just Don't Know...

This kid is a mystery.  He's not playing by the rules, which is often a good thing, but kinda perplexing.

Here's what we know:

His second C.diff test, sent after we came up was negative.  That by itself is very strange. The test is incredibly accurate, but almost never ordered a second time.  Apparently it tests for C.diff DNA which stays in the system forever.  (Okay, maybe not forever, but certainly a very long time.)  Which means that he should have tested positive still from his first test.

His first test was positive, his second (and third 'cause they were so surprised at the results) were negative.

We do know he tends to get rid of things quickly.  Rhino is another one that can test positive for a long time, but while it does kick his hind end, he's also tests negative shortly after.

Anyway, the negative test, plus his fevers that lasted for a while, plus his exhaustion points to some kind of virus.

So they've sent yet another stool sample to test for some of the more common GI viruses to see if we can figure it out.

But this kiddo has a real sense of humor.  The nasty diapers have come fast and furious for most of our stay.  That is, until a doc decides they want a test.  Just after writing orders, he stops.  And we wait for a few hours each time.  Silly goose.

And then, 'cause he's not having enough fun yet, he throws us yet another curve ball.  He's been higher on his oxygen this whole time, like six liters, which we attributed to not feeling so hot.  This morning we were actually able to turn him down to five.  But tonight he figured that wasn't enough.  He's up on seven, and nearly ended up on eight.

His tummy has also blown up.   I mean, this poor kid looks like he's about eight months pregnant, and he's carrying high.  That or I could put a red suit on him and he could be Santa's double.

So we're going to use a Farrell feeding bag to let his tummy vent and get an abdominal x-ray.  I don't know if it will show us anything, but I'm not holding my breath for going home tomorrow.  He's just having too much fun here. And as always, he's in charge.

“I was not designed to be forced. 

I will breathe after my own fashion. 

Let us see who is the strongest.” 

― Henry David Thoreau

For My Angel Mommy Friends

I have a lot of angel mommy friends.  Some are obvious, some less so.

You'd expect that I have a lot in the Trisomy/Heart/Trach/Vent world.

What's not as expected as the ones that surround us in everyday life.  I've known of some for a while, but just this week I found out that a woman I've known for a few years lost her teenage son to leukemia some time ago.  I had no idea.

Baby loss ('cause it doesn't matter how old/big your child is, when they're sick or hurt, they're still your baby) is so often taboo, hidden, glossed over.

It's almost like we're afraid it might be catching.  So if we don't acknowledge that it happens, it can't happen to us.

But it does, and it's a pain unlike any other.

Next week is Mother's Day here in the US.  And I'm not for one second suggesting that moms whose babies live in heaven are any less of a mom.  But theirs is a different, special, very painful motherhood.

And today is International Bereaved Mother's Day.  A day that was started in 2010 by a woman named Carly Marie who has sought healing for herself and others through sharing.

My heart goes out to these precious moms.  I love them, I ache for them.  I know someday, I'll join that exclusive club that no one wants to be part of.

So today, may I offer you a gift that I hope might bring a touch of peace to your soul.  A song, from your angel baby to you.  May you feel your child's love especially today.

Give sorrow words; the grief that does not speak 

whispers the o'er-fraught heart and bids it break. 

 ~William Shakespeare

PS:  On the Aaron front, we're still in limbo.  He's getting his feedings again and the fluids he needs, but we're having to use IVs to keep up with it.  He's sleeping a lot, and we're hoping it's a restful, healing sleep.  I think he's comfortable, but he's not his happy self yet.  We'll be here at least until tomorrow.

Time to Throw in the Towel

Yep, that kinda says it all.

I called his ped yesterday morning and they changed his med to a different one, a hopefully better one.  But by afternoon, "stuff" was just pouring out of him.  Almost literally pouring out.

Quick bio/chem lesson.  Most of us try to stay roughly equal on our fluid "ins" and "outs."  That's how we stay "balanced."  That's why you have to drink more when it's hot or you're exercising.  You need to replace the fluid you lose.

Aaron has a bunch of "insensible" losses, like through his suctioning, drool, etc that we can't measure.  But usually he's pretty happy at about 25-40% positive, meaning he's taking that much more in than he gives back in his diapers.

But that's not where he is right now.

We've been running Pedialyte constantly when he's not been getting his food, trying to stay on top of things.  But yesterday was pretty hard.  By bedtime, even with his extra Pedialyte, he was almost even.  And last night got worse.  His nurse couldn't even weigh the diapers, but she estimated they were each 100-150 grams.  And there were 12 of them.  Yeah, more than one an hour.

Four weeks ago, he weighed 20.5 kg.  Today it was 19.75.  That's over a pound and a half on his little body, and  I think he lost all of that within the past 24 hours.  No bueno.  At all.  Plus he's been running a fever on top of that, so more fluid loss.  Yeah, he's fluid negative, in a pretty big way.

Time to give up and call in back-up.  Now we're sitting up in the ED at Primary's where they gave him a bolus of IV and now are running it, trying to get his hydration up.  They've pulled a bunch of labs, and a couple have come back .

His urine culture looks clean, and his blood cells have some bands.  This indicates inflammation in his body (surprise, surprise), but his white blood count is normal, so they're not looking at sepsis, such a relief.  His fever has come down again since I gave Motrin just before we left.

And right now, he's resting quietly, for the first time since Thursday afternoon.

When the attending came in, she remembered us.  She said she knew I was on top of things and she'd already told the team that they were just going to do whatever Mom wanted, 'cause Mom knew what was going on.  Talk about a confidence booster!  I'm so grateful for their trust.

We're really hoping that with a day or two of gut rest and IV fluids, and letting the vanco take effect, we will have our bug back.  I really hope so.  I miss my happy little man.

If I had my way I'd make health catching instead of disease. 

~Robert Ingersoll

It's Back, He's Miserable

Bam, just like that, he's sick again.

He was doing sooo well!  Back to happy, playful, not so much oxygen little man. He went back to school this week, we even got his echo done.  Yeah, the one he was supposed to have done but got sick so we cancelled it.

But yesterday, when I took report from his nurse, she mentioned that his heart rate had been higher all night.

It stayed higher during the day and at school he had a couple of nasty diapers.  Totally out of the norm for him.  He came home, heart rate kept climbing, and he slept, but restless.  Not so much in the way of diapers either.

But by about 8:30, he started running a fever.  And then through the night, he had diarrhea pretty much every hour.

This is where my typical friends are glad they're not on my medical page.  We had lots of TMI discussion about poop going.  At least, it was TMI for most people.  But it was information I needed, and my special needs mom friends have it.  Gotta love it when you can call on the experts, 'cause yeah, that's what they are.

Anyway, by this morning he started showing signs of dehydration, cracked lips, pretty much no drool.  (You know those bibs he wears?  Those aren't just for decoration.)

So I've started Pedialyte again between his feedings and as soon as the office opens, I'll be calling in.

We JUST BARELY finished his Flagyl for the last round.  Like his last dose was at 2:00 this morning.  About 30% of people with C.diff relapse.  I was really hoping to be part of the other 70%.

My poor baby...

God didn't promise days without pain, laughter without sorrow, 

nor sunshine without rain, 

but He did promise strength for the day 

and light for the way.

Author Unknown