Sitting Pretty

Some might remember last fall when there was a nasty virus going around, putting otherwise healthy kids in the hospital.  Yeah, that would be the enterovirus that Aaron seems to have picked up.  When they told me on Friday night that he'd tested positive, it was all I could do to remain positive myself.

But one of the RTs helped.  She told me that yes, they had been hospitalizing otherwise healthy kids, but for some reason, kids that were already compromised seemed to actually handle it well.  And I clung to that, thinking that maybe it's because our kids know how to put their fighting gloves on.  After all, they've been dong it all their short lives.

We're still not out of the "peak" window, but if he continues along the path we're on, I'm quite hopeful that we'll get home soon.

I know part of it is because we've been very aggressive with his care.  They put him on a steroid burst the first night we were here to help relax his airways.  He's also getting CPT and albuterol treatments every four hours around the clock.  Plus lots and lots of suctioning.

Don't get me wrong, he IS sick.  But he's also handling it really well.  Silly boy even managed to dislodge his IV.  The things this kid pulls.  It looked like a massacre site in his bed.  Blood on his face, clothes, blanket, bed, and even the mobile hanging above him.  And him?  He was just laughing at us trying to clean him up.  Plus, notice how he's lying in bed.  His preferred position is sideways with his legs hanging over the edge.  But this is the first time since we got here that he's even tried to get that way.  Until now, he's been content to stay upright, lying straight.

And right now?  Right this very minute?  Well, he's entertaining himself by yanking on all his monitoring wires. Fun times, 'cause it makes funny noises when they come off of him.  His nurse and I are just shaking our heads.

Yep, our little guy is a fighter, and he's got his game on.  Lucky us.

We acquire the strength we have overcome. 

~Ralph Waldo Emerson

Doing Better, For Now

Aaron's actually doing really well, at least right now.  In fact, he's been on home vent AND oxygen settings now for several hours.  We even transferred out of the PICU and onto the floor this afternoon.

IF (and notice that's a great big "if") he can stay here, we'll come home in a couple of days.  But the challenge is that they don't expect these viruses to peak for another 24-48 hours.  And remember, there are two different respiratory issues that he tested positive for.

Plus, he's starting to get more junky and we're pulling more "stuff" coming out of his trach. (Better out than in, right?) So we'll see what happens.

Right now, we're hanging out on the floor, continuing breathing treatments and all that jazz.  And we've even had a talk about how this isn't supposed to be a field trip to the floor, but rather the step towards going home.  But at the same time, if he struggles again, the PICU is only an elevator ride away, instead of an ambulance ride.

And it has been kinda fun to see some of the staff that I call friends up here.  I first met our PICU nurse over four years ago, on his very first trip here, with heart failure.  Over time, she's held my hand, taught me, cried with me and mostly, laughed with me.  It's been so good to catch up with her as she cared for Aaron over the past two days.  Plus, it was fun for her to see how big he is.  When she first had him, he was only just over 2 kg, not quite 5 pounds.  Now, he weighs 19 kg, or over 40 pounds.  I love that my son is considered a favorite patient, that he provides a pick-me-up for his nurses.

So we'll do what we have to, and make it home when we can.  But at least tonight, I'm cautiously optimistic that we won't be here too long.  That may change, but hey, live in the moment, right?

If you could travel back in time to the present moment, what would you do differently? ~Robert Brault

Here We Go Again

I was really hoping to be thankful for not needing medical help this weekend. Instead, I'm grateful for them. Yep, we're back again.

Aaron started needing more oxygen yesterday.  Not a whole lot more, but some. And he wasn't able to come down at all during the night, which is kind of unusual.  But overall, he was pretty good.

This morning I left to (try to) get some dental fillings for a couple of the boys. It didn't work so well. Just before they started on Joseph, Deborah called and Aaron was in trouble. I felt badly for those listening to my side of the conversation. The looks on their faces was a mixture of horror and pity as we left in a  hurry.

Back home, he was doing okay, sort of. He was really high on his oxygen, about 9 litters, but more or less maintaining.  When he dropped again, and we bagged again, I also changed his vent settings to give him more support. Each time we bagged him, he would actually do okay for a little while. Unlike past times, he would hang on for a bit and then slowly drift down.

I finally gave up at about noon and called for back-up. And the verdict? Rhinovirus and enterovirus. I'm glad we came when we did. Here's hoping it doesn't get too ugly.

Timing really is nearly everything. And what it isn't, circumstance makes up for.

Steven Van Zandt

Hooray for Ear Infections!

No, really, I'm glad!  Just over a week ago, I found Aaron with quite a bit of blood in his right ear.  He's got ear tubes in and our course of action is really simple.  Drainage (of any kind) and we start antibiotic ear drops.  We rarely see blood (like only one other time), so I also put in a call to the ENT because not only was there a lot, it continued through the night.

The nurse wasn't at all concerned, especially since I'd already started the drops.  But if it continued through the week, give a call back on Thursday or Friday and they'd squeeze him in the following week.  So I reminded myself that we'd gone down this exact same road a couple years ago (last time we had blood in the ear), tamped down my anxiety, and got on with the million and one other things going on.

By Friday, we still had a bit of brown drainage, so I called and they scheduled us for yesterday.  In the meantime, we also tried to upsize his trach.  Unfortunately, he didn't do so well with that one.  By Saturday night, I had to change him back to his original trachs.  I'm still a bit perplexed on that one.  All his vent output numbers were the same as with his old trachs, but his heartrate and respiratory rate became waaay too high.

Sunday, he was still kinda "off" and by Sunday night/Monday morning, his oxygen needs were high, too.  And frankly, if it had been the trach, that should have resolved long before them.  So he took Monday off of school.  (Again, third time in a row!  I'm beginning to think this kid's got something against Mondays.)  And my worry-meter shot up a bit more.  He was doing okay  when asleep, but eating or awake, and even better when both eating and awake, he was needing way too much of that good O2, like about three times more than usual.

So the plan was to head into the ENT appointment, see what they found, and then probably head over to the emergency room for a cardio work-up.  'Cause it wasn't his lungs.  They sounded good and I wasn't able to pull anything out of them.  It was pointing towards worsening pulmonary hypertension tending towards heart failure.  And the anxiety ratcheted up a bit more.

BUT, when we got to the office and she pulled up the microscope and pried his tiny canals open, there it was.  His tube was intact, but completely blocked up again.  And when she suctioned it out, drainage started pouring out from behind the eardrum.

Poor baby.  He was not happy at all.  He was a real trooper, but imagine someone putting a speculum into your ear, and then deep suctioning it out.  Not only the feeling, but also the noise.  And remember, he doesn't hear so well through those ears because his canals are collapsed.

At first it was the startled eyes, then a big pouty lower lip.  It startled to tremble, and the crocodile tears started.  Finally, the whole body shudders and sobs joined in.  My heart both ached and was glad.  Ached for his pain, but rejoiced that we had a good and easy answer for his instability.

And funny enough, by the time we left the hospital, his oxygen needs had already dropped by almost half.

He's still not 100%, he's a bit more tired than usual and on a touch more oxygen, but I'd put him at 95%.  So yeah, hooray for ear infections.  'Cause it's so much better than the alternative.

If you don't get everything you want, think of the things you don't get that you don't want. 

~Oscar Wilde

A Bigger Pixie Stick

Aaron's been getting a lot more plugs lately.  We had our first one back in August, like, first one EVER!  Which is quite an accomplishment for a trach kiddo.  But since then, we've had a few others.  Including one a week ago, and one exactly a week before that.

So I put in a call to our good ol' Trach Whisperer.  She claims it's because he's getting bigger, who'd have thunk?  Apparently, the bigger you get, the bigger your boogers.  (Sorry, it's a fact of life.  He's got them, I've got them, we've all got them.)

As long as he was breathing well, meaning oxygen (O2) in and carbon dioxide (CO2) out and no plugs, we were good to sit where we were.  Which was with our original trach size.  Yeah, the ones he got back when he was a little 4.5 kilo (about 10 pounds) munchkin.

Now he's a much bigger munchkin, like closer to 18 kilos, or about 40 pounds.  And guess what, when your outsides grow, so do your insides.  So he needs a bigger trach.

We don't actually go in to trach/vent clinic until January, and the thought is that since he's still ventilated, he'll need a cuffed trach again.  But the whole reason he was trached has resolved, like, resolved almost two years ago.  And yes, he's still on the vent.

But if he's got a bigger tube, could he breathe better, maybe even off the vent?  Could he maybe get away without the cuff?  I even asked for permission (instead of forgiveness like I usually do) to see if I could try him on the bigger size without the cuff.  I thought I had one or two larger trachs in the basement.  Unfortunately, no dice.

So I asked some of my awesome friends in the special needs world if they had any spares.  I mean, I've got any number of neighbors that I could borrow a cup of sugar or a couple eggs from.  Trachs, well, not so much.  And they are all sorts of sizes and styles of them when you do find someone who's using one.

And just down the road is a girl who's cute daughter uses the bigger size we need.  And she had an extra!  It doesn't have a flex-end (the flexible part that is on the outside, makes it so the vent tubing doesn't pull so much on him), but it's the right size for the inside of him.  I waited until this afternoon to try it.  Frankly, if he's not going to tolerate it, I don't want him at school, or even better, on the school bus when things go south.

The new trach, with our own version of a "flex-end" on it.

And so far so good!  He IS pulling the vent tubing off it at an alarming rate.  It just pops off much easier than the flex-ends.  But it's a really good starting place.  And another friend in California put two of the same size, but with flex-ends, in the mail for me and they're supposed to be here tomorrow (which will keep my monkey from disconnecting himself every five minutes.)

So I'm watching, carefully.  If he starts to hold onto too much CO2, we'll have to go back to his old trachs until we can get a cuffed one.  And I'll probably wait until we are seen to do that.  But if he can maintain well, if he keeps his respiratory rate and heart rate down, stays playful, we'll keep him right where he is.

And maybe, maybe, just maybe, this will be the key we need to breathing on his own.  Who knew a millimeter could make such a difference?  Going from breathing through a 3.5 millimeter opening to a 4.5.  I wasn't kidding when I called it a pixie stick.

Life loves to be taken by the lapel and told: "I am with you kid. Let's go." ~Maya Angelou

More Than One Way to Skin a Cat

Ever since he was teeny tiny, when he couldn't even open those itty bitty fists, Aaron has tried to scratch his eye.  Not his eyelid, not his eye area, his eye, the eyeball.

On his right hand, the pointer finger was the only one he could extend, and he would take that finger, and put it in his right eye.  That finger, that eye, almost four and a half years.  Owie!  At least for Mom.  He seems to like it (whatever!).

Most of the time we can distract him, play with him, something.  A couple days ago that wasn't working.

So I got out his no-nos.  Yep, just like telling a little kid, "no, no, no."  They're designed for kids after cleft surgeries to keep them from playing with the surgical site.  Straps around the arm and they can't bend the elbow.  Also works for keeping little fingers out of eyes.  (grin)



I wondered how long it would stay on, maybe 15 minutes or so?  Try about 15 seconds.  But after that, he was happy to play with the no-no, in his right hand!  So it worked, right?  After all, the goal was to keep the finger out of the eye.

Gotta keep those goals in mind.  Good thing for this mama to keep in mind, too, as we work towards new heights.  Going to be some changes in his trach over the next little while.  We'll be trying some new things this weekend while he's with me all the time to keep an eye on things.  If they work, great. If not, we'll wait until our check-up in January to change things up a bit.  But this kid's growing, and so are his needs.  Gotta love that, really.

The best angle from which to approach any problem is the try-angle. 

~Author Unknown

What Love Looks Like

Aaron's getting big.  Which is a good thing!  This tiny kiddo is growing right up.  I think he finally made it into 3 month clothes around nine months old.

I know he had barely grown out of his preemie clothes and into newborns at four months.  But he's really made up for it since then.

Cuddling with Gramma and Grampa on his new rocker.

He's four years old, almost 40 pounds, and wearing 5T clothes.  He's bigger than any of his older siblings were at this age, but he still struggles with muscle control, and really, he still needs the support a baby gets.



I've had a wonderful, high quality rocker, a gift from my aunt and uncle that has seen thousands of hours of use.  But it's been getting a little small for our needs.  It's gotten harder to hold and cuddle him in there.



So when my parents were here in May, I asked my dad if he'd ever seen plans for a glider loveseat, or something like that.  Something I could comfortably cuddle with Aaron and rock him.  My dad is an AMAZING woodworker.  Frankly, it's a passion for him.



He and Mom took pictures of my rocker from just about every angle, wrote down measurements, and he said he'd see what he could come up with.

Oh, my....


They brought it up this past week, and dreams and hopes just didn't do it justice.  He even did the cut outs underneath and the carvings on the ends.

It is sooooooo comfortable.  And so incredibly beautiful.  And it adds so much to Aaron's quality of life.  It's much easier to rock and cuddle with him.





And even Andrew can get him in and out of bed and rock him now.  With the other one, he needed to be sitting already and try to balance him on his lap.  And heaven help us if Aaron decided he was wiggly.

Six months of loving, painstaking attention to detail.  Six months of measuring, measuring, and then cutting, sanding, carving, polishing.  I have no idea how to say "thank you" for this.  So often it's a struggle around here to make things work, make them comfortable.  I am completely overwhelmed.  

 Love is, above all, the gift of oneself. ~Jean Anouilh

B is for Breathing

Aaron is learning his ABC's at school.  Remember Dr. Suess ABC's?  "Aunt Annie's Alligator, A...a...A."

Well, today was the letter B.  And this kid needs some work on it.  He's been struggling a little bit more with his asthma, figured it was probably the weather.  But the big change was last weekend.  In my mind (probably not the safest place to play), he should have been fine by now.  Someday, SOMEDAY, I'll remember to ask HIM what he thinks.

Last Friday, Halloween, he pulled a "trick" on us with a significant asthma attack at school.  We put some measures in place, and then weaned back.  He was doing great! (we thought).  And then today, he started again, at school again.  (His poor nurse.)

She called me and started albuterol.  Okay, no problem.  Except she called back again, because he really wasn't responding well.  His sats were okay, but he was working hard, and not looking very happy.  So I went down to get them, and called the pediatrician on the way to see if he could be seen.

Got there, and yeah, he was pretty lethargic.  Again, vital signs were okay.  And "okay" is a good description.  They weren't scary, but they certainly weren't great either.  We put him in his wheelchair to take him out to the car, and I thought, "let's just make sure we don't have any kind of plug in there."  Wasn't sure where that came from.  He's gotten pretty good at being obvious when he's got a plug, and I didn't see any sign of it.  I quickly figured out that the Spirit must have been whispering to me.

I passed his suction catheter down to make sure the trach was open, or at least I tried  to pass it down.  It stopped just before it should have.  Weird, 'cause he wasn't showing any symptoms.  Tried again, again, no dice.  We transferred him quickly back to the floor and changed out his trach.

What was in there?  A nasty, sticky plug, totally occluding the bottom trach.  Think of a thick ball of old ear wax.  That's the consistency and texture.  Gross, and unbreathable.  It couldn't have been there a full minute, somehow it dislodged from further down and had just migrated up there, probably when we transferred him to his chair.  

So the doc put him on a 3-5 day course of oral steroids (which I could have done had I been thinking), and he's already looking a whole lot better.  At some point in time, I may actually remember that if he's using more oxygen, and he's needing albuterol, maybe, just maybe starting the steroids might be a good idea.

So where's he at right now?  After a single dose of steroids?  Well, "lethargic" would NOT be a good word to describe him.  And he's on less oxygen than we've seen in a couple months.  Yep, I think we've found the magic bullet for this time around.  B is for Breathing.

Improper breathing is a common cause of ill health.

Dr. Andrew Weil