Rough Ride

It’s been a tougher go this time around.  Not anywhere close to what a lot of my medical mama friends deal with, but still, for us, it’s hard.

Over his last several admits, we have come in at or close to the peak of his illness and need some, but not much, extra support, get better and get out.  This time, we were admitted pretty close to the beginning, plus there was the whole need-way-more-support-than usual thing.  Like I said last time, we haven’t needed this vent for several years, and he’s still on it.

We tried to reduce his PEEP from 14 to 12 on Monday, but I guess he forgot to read the script, or just decided to go rogue.  Whatever the reason, it didn’t work.  (FYI, most of us would probably sit about 5, and Aaron’s usual is 10.)   When we increased it back, he still needed more oxygen.  He spent most of Monday afternoon and all of yesterday needing between 80 and 100% oxygen.  They also tried to stop his antibiotics because his samples weren’t growing much out.  But by afternoon, we were pulling some really nasty, thick, tan colored secretions out of his trach.  For the record, that’s not a good thing.

So we restart the antibiotic (he only missed one dose) and also added on one more, Vancomycin.  The thing with Vanc is that it can cause something called “Red Man Syndrome.”  Now, he’s had Vanc before, quite a while ago, and not had any problem at all.  Again, not this time.  Poor baby, as the IV meds finished, his face turned tomato red, swelled a little, the rash spread over part of his torso and back, and down into the groin area.  Treatment was Benadryl, which knocked him out.  

All in all, it was a really rough day.  Not only did we not make progress, but he continued to get worse.

But then, Daddy showed up for a little while in the afternoon, which brought out the biggest smiles we’ve seen so far!  He’s been happy pretty much the whole time, but not nearly as much as when Dad came by!  And after his long (Benadryl-induced) nap, he stayed up most of the night.  You know, his typical routine.  He’s sleeping again now, and we have (finally!) been able to wean down on his oxygen again.  The charge nurse brought by a beautiful quilt for him that someone donated.  

So life is not all bad.  There are some incredible people here who take really good care of him.  The PICU is bursting at the seams again, mostly with respiratory “stuff”.    Part of the neuro trauma unit has even been converted to extra PICU beds.  But they all keep working hard, trying to keep these kids safe, get them better again.

And I’m so grateful for them.

“A river cuts through rock, not because of its power, but because of its persistence.”

James. M. Watkins

Double Whammy

Well, I got half of the diagnosis right, he does have rhino.  I missed the pneumonia.  Oops.  

Yeah, pneumonia.  I think I mentioned a long time ago that it’s the longest four-letter-word I know.  No bueno.

There are a variety of ventilators that are used for patients depending on their needs.  At home, we use a Trilogy home vent.  Works great!  There’s an ICU version which lets us give up to 100% oxygen because the home vent is limited to about 60% (and that’s on 12-15 liters of oxygen).  That’s what he was on yesterday when I wrote, and using 80%.  That worked for a little while, but didn’t last.

We ended up on 100% on that vent and he still wasn’t terribly impressed.  By the time we got settled in the PICU, they had to switch him to a more sophisticated and powerful vent called a Drager Evita. There are still more complicated ventilators, but he’s never had to use one.  We used to be on the Drager when we came in, but that was before the hospital had the Trilogies.  We haven’t used one for over four years.  But this kid wants what he wants.

Overnight, we were able to wean his oxygen down from 100% to 55%, but he’s also on much higher support keeping his lungs open.  The immediate goal was to get his oxygen down so that if he got worse, we had some room to move to help him, rather than already being maxed out.  They haven’t rounded yet, but I think (I hope) today’s goal will be to reduce his support settings closer to his home settings, and then we continue to work.

He’s had so many x-rays, he glows in the dark!

Long and short, he’s pretty sick, and there is no way we were going to be able to take care of this at home.  And I’m so glad I listened to that little voice yesterday morning that said, “it’s time to go.”  With the support he needed by late afternoon, it would have been a challenge to get him up here, even bagging him all the way.  Much nicer to drive ourselves than to have to rush up with lights and sirens, which is where it would have been.  

That white stuff? Not good.

BUT, someone also forgot to tell him that he’s sick, which is huge!  When he didn’t have the support he needed, he was tired, almost lethargic.  But support him?  Yep, smiles and songs and crazy hijinks.  He serenaded the unit last night while also pulling his wires and monitors off.  He took his 15 minute nap about 9:30 last night and then was good for a long, late-night party.  Right now, he’s asleep, but my guess is most kids who stayed up late would like to be as well.

So it’s going to take time and effort, but he’ll get better.  They’ve got some high-powered antibiotics on board, given that the most likely culprit is psuedomonas, a nasty bacteria.  And in the meantime, there is a lot of staff around here who are stopping by to say “hi” to him, and remarking about how wonderful it is that they haven’t seen him for almost six months.

Yep, life is good.

Life:  it’s about the gift not the package it comes in.

Dennis P. Costea, Jr.

Party’s Over

Well, it was fun while it lasted.  Aaron started having cold symptoms yesterday morning and by this morning I was out of tools to keep him home.  We’re in the ER right now but I drove us up here (taking my victories where I can).  He’s headed to the PICU after they get x-rays and labs.  He’s just on too much oxygen to go to the floor.  My money is on rhino again.  

So here we go.  You know that song from the 80’s?  “Should I stay or should I go? If I go there will be trouble.  If I stay it will be double.  So come on and let me know, should I stay or should I go?”  Yep, been singing that in my mind for the past 24+ hours.

How’d we get here?  Well, it was like this.  I think I may have jinxed myself.  On Tuesday, Aaron threw a plug about the same time he got off the bus.  In fact, he’d done the same thing last Friday, five days earlier.  I looked at the kid and told him that I had an insanely busy week and if he was going to try any funny business, he had to wait until Saturday night.  He wasn’t an only child and this was the week I was tied up with siblings.  Guess he took me at my word.

He actually did really, really well all week.  I was down at BYU with the Dancesport Wed, Thursday and Friday, AAALLLLL day.  Then on Saturday, Andrew had his Grand Concert at the middle school.  Saturday morning he started having more trouble breathing, more junk coming out of his trach, followed by his nose.

By this morning it was pretty obvious, I could either try to bring him in on my own, or wait a few more hours and call an ambulance.  So I hyper-oxygenated him by bagging him up and put him in the car.  We made it up here just fine, and then he started struggling again.  We’re now on 80% FiO2 on the ICU vent.  So yep, apparently it was a good call to come on in.  

And so the ride begins again...

Every day has a little bit of beauty and a little bit of chaos. 

~Tanisha,

Thoughts and Prayers

I've heard a lot of chatter this week about the futility of "sending thoughts and prayers."  Along with the rest of the nation, I was shocked, hurt, angered, saddened, and frightened by the news out of Florida on Valentine's Day.

Valentine's Day.  The day I danced with my last 6th grader at his dance.  The 6th grader who was a 1st grader at the time of the Sandy Hook shooting.  The day I subbed in a ballroom class in a high school.  The day my 17 year old attended a typical day in another high school.  Did it hit home?  Yeah, it really, really did.

But here's the thing, in reality, there's not a whole lot I can do for those families in Florida.  Do I think more gun legislation would help? I don't know. Would better mental health services work?  Maybe.  Would establishing better connections between people?  Probably.  So I'll work on that one.

And in the meantime, I do what I can in my own little world.  Every. Single. Morning when I walk into a new classroom, I scout it out.  I lock the door and use a magnet strip to cover the strike plate so it only takes a second to secure the door.  I look to see how to close the blinds.  I figure out where kids can go to be out of sight of a door.  And I pray!  Because I think it matters.

There are so many times when we can't do anything else.  But I believe prayer matters. I've always believed this in kinda a ethereal, nebulous way.  But in the past eight years, I've come to know it in the most intimate, personal way.

Eight years ago, when I simply couldn't stop crying, I felt the peace descend as family members found out, and started praying for us, and I found strength.   When Aaron was lifeflighted, I felt the prayers of the neighborhood that was woke out of sleep in the wee hours of the morning, and found peace.  When things took an awful turn for the worse during a time I stepped away from the hospital for a few hours, and I went racing back, the prayers of people around the world went with me as my daughter sent out a plea for them on Facebook.  I learned that they are tangible, real, and oh so important.

Does that mean that's all we have to do?  Of course not!  If a staff member showed in in Aaron's doorway and said, "Good luck, I'm praying for you" I think I'd take their head off.  They have a job, they can do it, and they darn well better.  But if they also want to add their prayers, well, this mama had better have some Kleenex handy.  I remember a nurse stopping me in the hall and telling me he was praying for Aaron, and he's not a member of our faith.  That was several years ago, and I still tear up when I think of it.  Because it matters.

So yes, using prayer as an excuse for not doing something is not acceptable.  Not at all.  But using prayer in conjunction with whatever can be done, big or small, and maybe especially praying and sending good thoughts when there's nothing else you can do is important.  It's vital.  It's life-sustaining in many, many ways.

And if you want to spare some prayers for my four boys who will have to drive home from Southern Utah tomorrow afternoon in the middle of a winter snowstorm, and maybe a couple for their mama who is already worried, I'd be so grateful.

The effectual fervent prayer of a righteous man [or woman] availeth much.

James 5:16

Grounded!

Shirt says,
 “I’ve got MOVES you’ve NEVER SEEN”

Boom!  He’s grounded.  Until Easter.  

Yeah, we tried to make it work this winter.  He’s doing so well.  But more and more I’m hearing about how bad the flu season is, more people around here are getting sick, more children are dying.  We still haven’t reached the peak according to reports I’m seeing.  And it’s just not worth it.

While mortality rates haven’t hit as high as some years, the number sick are rivaling the year the swine flu made it’s debut.  And as long as people think they just “have to” go to church, the store, the hockey game (seriously!!), we’re not taking those chances.

He’s still going to school, but see, he goes with a nurse whose primary focus is keeping him well.  His school is very careful to watch for any signs of illness, any of them, and quickly exclude the child.  And his nurses think nothing of calling me and saying, “today doesn’t look like a good learning environment for him.”  Code speak for someone looks germy.  Nobody there is thinking the world will end if they happen to miss a day.

And frankly, that’s the crux of the matter.  The world in general will go on, in fact, it probably won’t even realize you missed a day.  Yeah, there may be some assignments that need to be made up.  Someone else will have to pinch hit for you.  That’s why I even have a job.  I substitute when a teacher can’t make it to work.  Is it ideal?  No.  But is it worth killing someone over?  No, it’s not.

But most people don’t see it that way, so I have to.  It’s okay.  We’ll just stay home and try to keep him safe.  And when spring comes (the real one, not just this lack-of-winter season we’ve been having) we’ll come out of hibernation with the rest of the animals.

Eight years ago today, we had an ultrasound that rocked our world, changed my whole focus.  I never dreamed my life would look like it does now, but that’s okay.  I’m a better person for it, more focused, more grounded.  And I’m not looking for it to change any time soon.

And that trach change that Michael said he wanted to do?  Yep, last Sunday night he did one.  My 11-year-old son changed his brother’s trach and did a fine job of it, too.

Better a thousand times careful than once dead.

Proverb

Not Much, But Still, So Much. Life is Good.

This cute kid has been doing really well!  Unfortunately "has been" seem to be the operative words here.  He's struggled the past few days and I'm not sure why. 

Has he caught something?  Right, like that could happen with all the bugs going around, not to mention we had the lovely influenza B right here at home a few weeks ago.

Is it a change in diet?  I ran out of the tofu we've used as a protein source and I started using a protein powder.  I've gone over the ingredients in the powder and really, there's nothing there that stands out.  It's a vegan, non-GMO, no sugar, etc, etc recipe, but still...  Actually, I'm kinda hoping it's this one.  Much easier to fix.  Tomorrow he'll be getting his food without it and we'll do that for a few days to see if that makes the difference.

In other news, he got a haircut yesterday.  Yep, he liked it about as much as most 7 year old boys do.  Not at all.  Unlike most of those boys however, he was also afraid of the clippers.  Poor kiddo.  As I flipped them on, he started crying.  But with big brother's help, he managed to get through it, and his bath and then fell asleep.  But the new do sure looks good!

Aaron knows what's going on.  He is very aware of what's happening around him.  A couple weeks ago he was using his talker at school to tell his classmate "good job!" on a presentation.  The next day he announced that he was "tired and grumpy."  And his nurse agreed, but then he perked up in the afternoon.  In fact, it was the same morning after he stayed up until 4 am.  Tired and grumpy?  I can't imagine why.




The other day I was talking with one of the boys about maybe learning how to change the trach.  We've always been more than open to teaching any of our kids how to take care of Aaron, but also careful not to push them into something they don't want to handle.  Joseph (17), Andrew (14) and Michael (11) are all very capable of suctioning, bagging, increasing oxygen, feeding, venting the tummy and so on.  But none have ever changed the trach, so I was asking about it.  Joseph and Andrew were both adamant that it was something they really didn't want to learn.  They've helped enough times that if they had to, I have no doubt they'd do just fine, but they don't want that responsibility, and that's okay.  Michael on the other hand, did try once, and Aaron was a bit of a turkey and started trying to do crunches and laughing at him. 

So as we were talking, I mentioned that Michael probably would want to do a trach change, and Aaron, who had been lying there watching the exchange, starts nodding his head!  Yeah, he really did!  I looked at him and grinned, and asked him, "So do you think Michael wants to change your trach?"  And he nodded more, and more vigorously!  Michael wasn't around, so later when he was, I asked him, and "of course I want to!"  Aaron knew, he knows his brothers, and he called it.  He knows Andrew and Joseph would do anything to help him, but they're not comfortable with that aspect.  And he knows that Michael wants to do it all. 

One more note about Aaron and Michael:  Michael's science fair projects have been driven by his need to understand Aaron.  Last year, he looked at barometric pressures and how they influence oxygen needs.  This year he also incorporated heart rates and respiratory rates.  As far as his project went, he noticed that even when oxygen needs didn't change, heart rate and respiratory rates increased.  HOWEVER, he also noted that Aaron has become much more stable over the past year.

Last year, Aaron's oxygen needs fluctuated much more than anyone else's did.  This year, his oxygen was pretty stable as his heart and lungs were better able to compensate and he didn't use much more oxygen.  And Michael was the one that realized that, not me.  Pretty incredible. 

Finally, it's heart month.  But for those who live with a congenital heart defect, every month is heart month.  And sadly, many babies don't ever grow up.  In fact, twice as many children die from CHDs than all the childhood cancers combined.  When a child passes, if they are dressed in clothes, those outfits need to be new.  Understandably, new clothes are not at the forefront of the parents' thinking, and so are often pulled from a closet at the hospital.  Primary's closet is empty.  A sweet friend wants to fill that in memory of her own heart warrior and I'm trying to help. 

This was less than $25.

If you would like to donate clothes (with tags on them), you can send them to her or bring them to me, or send money for them to be purchased.  Her Facebook page is Colton's Closet  and you can read more about her son there.  At the moment, sizes 4T and 5T are needed the most, but everything from preemie through children's sizes are welcome.  It's such a little thing for us to do, but means so much to a parent to be able to dress their child, sometimes for the very first time, before sending them away. 

“Awareness is like the sun. When it shines on things, they are transformed.” 

Thich Nhat Hanh

Smiles are Back! (And Sometimes Mama is Slow...)

Okay, ever have those times when things are bugging you, nagging at you, but you're not sure what or why or whatever? 

Yep, that would describe the past few weeks around here, pretty much since mid-December.

Now, of course, there's any number of things that it could be blamed on.  Rising flu season, Christmas coming, work, kids, you know, LIFE! 

Last Sunday morning (a week ago) I was getting ready for church and thinking about Aaron.  I was taking inventory and congratulating myself on getting him off of two (2!) long term maintenance meds over the past month.  His asthma med he'd been taking for over four years, and his reflux one since he was four weeks old, pretty much his whole life.  Pretty awesome!

Until I realized, it wasn't.  Quiet moments are not only nice, they're necessary.  As I sat in the chapel listening to the prelude music, Aaron was restless.  And it wasn't his "this is fun, let's party!" restlessness.  It was more writhing, squirming, and uncomfortable.  He was hitting his head, hard, grimacing, and no way we could coax a smile.  All of a sudden, it all came together, right there.

Coming off the reflux med wasn't a good thing, and he'd been suffering for over three weeks. 

It started off slow, a little less restful sleep at night, not as many smiles.  A little more oxygen here and there.  Oh, I ached for my sweet boy who couldn't tell me what was going on. 

As soon as we got him, I gave him a full dose of his medication, and we restarted it at his regular time the next morning. 

On Friday I sent the following email to his doctor: 

We tried to stop Aaron’s Prevacid after his last visit in December. We gave him a half dose until 12/30 and then stopped. It didn’t work.

When we cut his dose in half, he became less social, less smiley, and less interactive. His sleep patterns are also affected with restless sleep at night and tired during the day. His oxygen needs also increased a bit. At the time, I didn’t connect it with the changes.

When we stopped it, he started needing more oxygen, especially just after eating and while sleeping. Usually those are the times his needs decrease. He had clear lung sounds and no secretions, and no other obvious signs of illness. His last feeding is at 10pm and he gets water overnight from 11 pm to 5 am. By Sunday, January 7, he was visibly uncomfortable, especially right after eating.

I restarted his Prevacid on Sunday, January 7 and we have seen much improvement. He is smiling a lot again and his teacher reports that he is interactive and attentive the way he was before we tried to decrease the med. He is sleeping well at night again. His oxygen needs are not quite back to baseline but they are better, and the patterns have returned to the way they were before.

I don’t know if we want to just keep him on the Prevacid or try Zantac. Please let me know.

She responded quickly that this was a "pretty significant response" and we'd just keep him on his Prevacid.  

My poor baby.  Two months ago my doctor diagnosed me with a "probable ulcer" (I know, what took me so long, right?) and put me on Prevacid. You know, it hurt!  My stomach ached pretty much all the time, and especially after eating.  It took several days of medication to make the pain go away, and I'm a bit leery of what's going to happen when I stop taking it in another month.  No wonder he wasn't smiley! 

But he is now.  And that nagging feeling gray cloud feeling?  Yep, it's pretty much gone, too. 

I’ve never seen a smiling face that was not beautiful. 

~Author unknown