Thursday, September 24, 2015

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."

Wednesday, September 23, 2015

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

Monday, September 21, 2015


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

Saturday, September 19, 2015

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

Friday, September 18, 2015

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

Sunday, September 13, 2015

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

Thursday, September 10, 2015

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

Sunday, September 6, 2015

So Much of Life Happening...

First Day of Kindergarten
Okay, so it's been a while.  Too long, in fact.  But life around here not only continues to go on, it's kinda crazy.  I guess that's nothing new, right?

Senior, 4th grade, 7th grade, Sophomore
The kids are all back in school and we're trying to find our pace.

Living at home,
BYU student
Aaron actually made it to his first real day of school this year!  First one.

Moving 2 into the dorms.  ALL 3 guys
in David's apartment are DAVID!
His first year, he had a PICC line and a blood infection.  Yep, not going there.

His second year, last year, he was trying to get over a cold.  That was one of the few times we didn't end up in the hospital with a cold, but he still wasn't leaving the house.

This year, he made it!  YEA!!

Anyway, so how things roll around here, well, we just keep going.

Aaron had an audiology appointment this week.  He's got a hearing aid that he wears on his head, but when his hair gets long, it causes feedback.  So in preparation for that, he got a haircut.

I guess it's the weird lot of a medically fragile mama that every time I cut it, there's a niggling thought in the back of my mind wondering how many more times I'm going to get to do this.  So far, we've been able to do it many times.  How lucky we are.

But this time was a little different.  See, usually when I turn the clippers on, I show them to him, and place them on his hand, his cheek, etc, so he can feel the vibration and not be scared by them.  But this little mostly deaf boy heard them click on this time.  And he was scared.  I tried to show him it was okay, but he just wasn't buying it.  It was the first time we've had tears for a haircut, and it about broke my heart.

Next up was the bath.  That one almost always has tears, and since he was already feeling on edge, I figured it might be a bad one.  But he was okay.  Still not smiling and playing, but hey, over the sobs we usually get, I'll take it!

For those who wonder how we do it, he's got this mesh bath chair a friend gave us when her daughter outgrew it and he sits in there.  He can't lay down in the tub, or even get water into the trach site.  You know, perfect path right to the lungs and all.

But he recovered from the ordeal pretty well.  Usually after a bath, he's all tuckered out and wants nothing but sleep.  Not this time.

Audiology went well.  He still doesn't seem to hear well without his hearing aid, but we definitely get some results with it.  But this mellow kid doesn't make it easy.  He hears a tone, and reacts.  But when you repeat, even at higher volumes, it's like, "I already heard that, no need to respond."

Maybe kinda like selective hearing that sometimes others employ??

Afterwards, we got to visit for a little bit with one of his sweet friends who was on his way to his first day of school.  Isn't he a cutie?

A couple snapshots into what our days can be like around here:

Aaron uses a pulse/ox 24/7.  It's a big part of keeping him safe.  But like anything, there are false alarms, and silly alarms.  To disconnect it, you press on two little spots on either side of the cord probe and pull it apart.  No biggie because he really doesn't reach his feet, so it stays on.  But every once in a while, it alarms "no sensor" and he's somehow disconnected it.  He thinks it's hilarious.

Then there are sirens.  Pre-Aaron, I would hear sirens and fleetingly wonder where they were going.  That's it, nothing else.  Yesterday morning there were several.  My heart went out to whoever they were trying to help.  But a small part of me grinned and said, "there are sirens, and I have no idea where they are going, and that's good!"  And that's pretty typical of my thought pattern when I hear them.  I can also usually pick out which vehicles they're coming from, police, fire truck or ambulance.  Yeah, I think I've become a bit too familiar with those sounds.

We've been nurse-less for three of our last seven night shifts.  One night, the nurse was sick, another nurse's car broke down and she couldn't make it, and last night, we just didn't have anyone.  So I was on duty.  A night nurse can't sleep on the job.  I mean, really, do you know many jobs that pay you to sleep?  But I have to, and I'm not getting paid.  So when we have no nurse, this is how we do it.  The boys put a mattress on the floor for me and I set alarms for his 2 a.m and 6 a.m. meds.  He also gets one at 5 a.m., but I combine those two when I'm doing it myself.

And then I try to sleep.  This crazy monkey of mine seems to think that when there's no nurse, it's party time.  Most nights, he's going to sleep around 10 p.m. or so.  Which would be wonderful!  But on the nights I'm taking care of things, it's usually close to 1:30 a.m.  And he rocks and rolls, grabs toys and throws them out.  Sets off alarms.  You get the picture.  So if I'm a little absentminded, you know what's going on.

Still, I wouldn't have it any other way (most of the time).  What a privilege  to be his mother.  What a gift our Father has given our family with this precious soul.  And I'm grateful that I still get those sometimes sleepless nights with him.

When everything doesn't go perfectly as hoped, it isn't tragedy — it's life. 
~Terri Guillemets