On Hospital Time

Well, we're sitting on "hospital time."

I've heard people talk about South American time, where 2 o'clock means sometime mid-afternoon.

Hospital time is kinda similar.  "Morning" means between 5 a.m. and 2 p.m.  Really, it's the nature of the beast.  Until we can figure out how to schedule our emergencies, unexpected events, and just the ebb and flow of life, I think that's the way it's going to be.

That said, we should bust out of here sometime this "morning."  (Hospital morning, you know.)

Haven't seen the doc yet, but our prescription is ready downstairs, and his highest oxygen needs yesterday were 4.5.  We didn't even need to have the safety net of bumping above 5 for a brief amount of time.

So tonight we'll sleep in our own beds, grateful for all the help we get up here, but also grateful to pass their expertise onto someone else who needs it.

"There's no place like home, there's no place like home, there's no place like home."

Dorothy

Countdown Clock

And the countdown clock has started.

I've felt almost like I was living a Groundhog Day type existence.  Every day, starting on Saturday, it was "he's looking so good, not tomorrow, but home probably on ________ (insert the next day)"  Repeat, repeat, repeat.

He made it back to his home vent on Saturday evening on about ten liters.  And most of the time since then, he's been up there.  When he was asleep, we might get to seven, but not really below that.

Then this morning, I woke up and found him on 2.  Yeah, TWO!!!  He was sound asleep, but still!

So start the clock.  He needs to be consistently five liters or less for 24 hours.

And sometimes we've had to stop the clock.  I mean, that's what the countdown is for, to make sure he really can handle it.  But so far, he's below four and active and playing.

We're hoping...

The birds of hope are everywhere, listen to them sing. 

~Terri Guillemets

Sleep...

He's FINALLY sleeping.  This kid has been having a party since he got here.  Like, he'll sleep for an hour or so, and then play for several more!  Until last night, he probably only has slept about eight hours since we got here Friday morning.

Yeah, exhaustion anyone?

And when he's awake, or tired, he uses more oxygen.  Once he was sleeping soundly, we made good progress.

He woke briefly this morning when his nurse did his food and his medicines, played for a couple minutes, and is back out again.  I think he may sleep most of the day.

We're also probably going to the floor today.  He's on his oral antibiotic instead of IV.  It looks like our old buddy, pseudomonas, has gotten out of hand.  He's been colonized with it for years, but every so often, it gets out of control and causes problems.

So now we just have to get his oxygen under control and everything should be good.

Sleep is the golden chain that ties health and our bodies together.

Thomas Dekker

Hotel on the Hill

 After posting yesterday morning, I put in a call to the hospital.  I was just really worried and was trying to decide if there was more to things.

He had a low-grade fever, not even technically a fever.  100.8.  But he usually runs low, like 97.7 instead of 98.6.  And there was all the "stuff" I was pulling out of his trach.  Plus, we were sitting on about eight liters of oxygen.

Our trach ninja felt like he needed to be evaluated.  She also felt like if it was just viral, we were still probably in an okay place at home.  But especially since he'd been sick ten days earlier, there was the chance it had turned into something bacterial.

So we loaded up and drove on up.  And yep, good call.  There is something bacterial going on.  We're not quite sure exactly what, but they're looking into it.  His white blood count, those infection-fighting cells, came back pretty high (24 with a normal range of 5-15) with a significant left shift.  That means that the bone marrow is not only producing a large number of white blood cells, but it's also releasing them into the blood stream before their fully mature so they can get right to work.  Isn't our body incredible the way it works?

But that also meant that staying home and giving more breathing treatments wasn't going to work.

His x-ray showed some white patches in the lung behind the heart, so it may be a pneumonia.  That's what they're leaning towards right now.  My money is also on the trach cell sample growing out something nasty.

He's graduated to a "posy bed."  The crib has gotten
too small, and a regular bed just isn't safe.  Doesn't this
look fun?  He thinks so.

But one way or another, he's up here at his vacation home getting the help he needs.  He's on IV antibiotics, a fairly broad spectrum one until we can figure out exactly which bug to target.  And he's on their ventilator, which means we're in the PICU.

Once again, someone forgot to tell him he's sick.  He figured since he was on vacation, he ought to party. This morning his nurse asked if I slept okay.  Yeah, pretty good for the chair/bed and PICU.  But apparently he didn't.  He played until 4:30 a.m., which means he'll be sleeping all day.

My silly bug.  So grateful he can get the help he needs.

At some time in everyone's life, we all start needing a little help.

Jim Robbins

PTSD . . . Yep, it's Ugly

I HATE PTSD.  It's awful.  It changes my brain, doesn't let me focus, sleep, function.  It can come out of nowhere.

And it's back.

Thursday evening

Tuesday afternoon

Aaron has been back on his vent trials.  The past few days have been amazing.  Off almost the entire day.

Plus, our medical equipment company no longer provides the filter with O2 connector we've been using, so we had to switch to a different kind.

Down side is I no longer have a "door" I can open and suction through.  Up side is the oxygen is firmly connected, and with the addition of a small rubber band, I can make it so he can't take it apart.  Something he regularly did with the one I had been using.

But yesterday, his regular school nurse was out of town and we didn't have any other.  So he stayed home.  And the vent trial didn't go so well.  By 2:00, I gave up and put him back on his ventilator.  By 3:30, he was still on a lot of oxygen.  And by 5:30, I knew things were up.

He was tired, almost lethargic.  His heart rate was up, much higher oxygen needs, starting to pull gunk out of his trach.  His brothers got pretty grossed out.

And BOOM, there I was again.  Right back at Christmas time when we lifeflighted.  He'd been sick for a couple days, but we weathered it at home.  Got better, but then started acting "off," more tired, more junky, and then spiked a fever.   I took him into the local hospital to see if maybe he was developing a bacterial infection.  Nope, but while there, he decompensated (went downhill) really fast.  The chopper was called in and we spent the next several days fighting to keep him alive.

It was scary, it was ugly.  And last night I was right back there again.

He did develop a low grade fever, and we pulled lots of nasties out of him.  But we've also really ramped up his breathing treatments, and his wonderful primary nurse was here.

William asked me what I thought our chances of going in were as we went to bed.  I told him that at the beginning of the night, I'd have put them at about 95%.  But since he'd settled down and his fever didn't progress, I was going to say closer to 75%.

Well, we're still here at home this morning.  But the hospital bag is all packed.  He's still higher on his oxygen and his heart rate and breaths are faster than normal.  But he's still well within what we can support at home.  We'll just have to see what happens once he wakes up.

But if I'm short-tempered, easily distracted, and can't focus, you know why.  I guess the thing to be grateful for is that I'm still being thrown into this.  I can't even begin to wrap my head around what happens when it's all taken away.

And really, can't he just leave these rhinos alone and catch an elephant instead?

A new wound makes all the old ones ache again. ~Mignon McLaughlin

Siblings: The Unsung Heroes

Here we go again.  Not much to say, but that's never stopped me before.  So just be warned, if you choose to read, you're going to be subjected to my inner ramblings.

Aaron has been sick.  He's fighting off something, something upper respiratory.  But he seems to have peaked and tolerated things well at home.  He has been home from school, and frankly not gone anywhere since Wednesday morning.

This morning is the first time I've taken him off the vent since then, too.  We'll see how he does.

But we haven't been in the hospital.  We haven't even bagged him, although I came close a couple times.  He's gotten albuterol treatments about once a day, instead of every six or four (or even two!) hours.

And he's screwed up his sleep schedule again.  Yep, party monkey is back in full force.  "Bedtime" last night was 4 a.m. this morning.  Thank heavens for wonderful night nurses!!

I've been thinking a lot about siblings lately.  Yeah, the unsung heroes in these battles.  They do so much, and do without so much.

One son's teacher (really a nice lady, I do like her a lot) asked where he went on vacation for spring break a couple years ago.

Um, that would have been nowhere.  Instead, he stayed home with his siblings while Dad was out of town and Mom and Aaron hung out at the Hotel on the Hill, enjoying the amenities of the PICU.


Last week, I was doing Aaron's cares, and Michael wanted to do them instead.  He's NINE.  Nine years old, and he did trach cares, including changing ties, and g-tube cares as well as many I've seen do them in the hospital.  Then he changed Aaron's diaper.  He wants to do the next trach change.

Yeah, change the trach.  Something many, many adults have a lot of trouble wrapping their minds around.  But it's part of his life.  He knows sat monitors, wave patterns, when it's bad, when it's good.  He's grown up with it.

Andrew (12) just checked on Aaron's alarms.  Bad wave pattern, bad numbers.  So he did some troubleshooting.  Good wave pattern, bad numbers, oops, oxygen was undone.  Hooked it back up, and did a capillary refill test to make sure that Aaron really was okay and the monitor was being accurate.  Last time we had to call the ambulance, he bagged Aaron, keeping him breathing and comfortable, and asked if I'd thought to change out the trach.

And the others are no less knowledgeable or capable, even if some would rather not deal with the stomas.

But underlying all of this, underneath all the medical knowledge, skills, information, is the knowledge that their brother will not be here forever.  And they are not alone in that.

This morning, a friend and her sweet baby left for the Mayo clinic.  Her little one has a complex heart condition.  She's just over two years old and is going to the best pediatric cardiac surgeon who will be attempting something that hasn't been done before.  Because that's little Capri's only chance.

And her brother and sister know this.  And it's heartbreaking.  Her brother's tearful comment was, "I'm afraid the next time I talk to my sister, it will be in a graveyard."  He's six.  Do most six year olds even know where or what a graveyard is?  Other than a spooky place on Halloween, I mean.

When a child is born with a broken heart, it's not just one heart.  It's three, or more.  Because it breaks the hearts of each family member as well.  When you remember the little ones with special needs, remember their siblings, those standing in the shadows.  The quiet heroes behind the scenes who love their brothers and sisters with a fierce, protective passion.  Who play and goof off and contribute so much to each family.

 

A sibling may be the keeper of one’s identity, the only person with the keys to one’s unfettered, more fundamental self. ~Marian Sandmaier

I Have NO Idea....

I have NO idea what this kid is up to.

Yesterday morning when he woke up, he was "off."  His eyes looked sad, he had a clear runny nose, but no color.  We also suctioned him a bit more than usual, which means we actually needed to suction.

And he wasn't his usual happy self.  His nurse also told me that there had been a kiddo in the class the day before with a snotty nose and cough, but since he stayed on one side and Aaron was well away, they thought it would be okay.

I was not okay.  I told his nurses (he had two as one was shadowing/training) that if the child was there again, Aaron needed to come home.  And to go ahead with albuterol if he was struggling with sats, etc.

Just before 11, I got a call.  He was pretty junky, they'd already given albuterol, and he just wasn't himself.  I decided to go get him, and yes, I was irritated and on edge.  (Sorry to anyone who had any contact with me yesterday.)

Get him home, try to make him comfy, call the office and arrange to have files I can do if we end up at the Hotel on the Hill (Primary's) and wait for it.  And Aaron?  He goes to sleep.

And sleeps, and sleeps, and sleeps. In fact, I was going to schedule his albuterol instead of waiting for him to tell me he needed it, but he was so sound asleep I didn't want to disturb him.  Like low 70's heart rate asleep.  (FYI, that's about as low as his EVER goes.)  And it went on for hours!

And he woke up happy, and not needing quite as much oxygen as usual.

But then, he went to sleep pretty early again, he was agitated during the night, and slept quite late this morning.

I'm not sure what's happening here.  I mean, if it was me or one of the older kids, I'd totally expect it.  Especially my college and high school kids.  Those guys not only burn the candle at both ends, they often use the middle, too!

I'm holding out for it being a growth spurt. That sounds like a great option.  But whatever it is, we'll just work with it.  If he looks good all day, he'll probably go back to school tomorrow.

And his newest, latest trick is one I would have been happy for him never to have learned.

Aaron's trach is held in with trach ties.  A simple thing, a piece of soft material that hooks into the holes on each side and secures with some really tight velcro.

Except that twice within the past couple weeks, he's managed to somehow undo the right side and pull it loose.  Really, kid?  Are you trying to give me a heart attack?  I mean, it's only your airway, no biggie, right??  Both times I managed to discover it before he decannulated (took his trach out of his airway), but seriously, can't we work on a different skill?

In other news, there are some exciting things hopefully on the horizon with Make A Wish.  Everything's still in the preliminary stages, but it is moving forward.  This has the potential to really improve Aaron's life.  If you want more information, or to be involved, please contact me privately.  The more the merrier, and many hands make light work, you know how it goes.  When it's ready for public knowledge, you know I'll be shouting it out, though!

Anyway, I'm thinking that perhaps I should have taken ballet as a child, 'cause Aaron sure likes to keep me on my toes.

"Each day is a new life. Seize it. Live it." - 
David Guy Powers