Monday, April 29, 2013

Onward and Upward (or Downward??)

We are, right now at this moment, sitting on four liters of oxygen.  I don't know if he will stay here, but if he spends today bouncing between four and five instead of five to six like yesterday, and six to eight like Saturday, well, that's progess!

He's having lots of fun playing all night and sleeping during the day.  His therapist came in this morning and mentioned that he'd had a hard night.  I said, "no, he was playing all night."  She said, "yeah, I heard he didn't sleep a wink."  Well, for you or me, that might mean a rough night.  For him, that's pretty much the norm. 

And right now, he's sawing logs.  I mean, really.  He's snoring and it's pretty loud.  Maybe I should be grateful he played all night.  This might have been hard to sleep through.  But it also means that his leak in his airway is back.  It was gone for about a week because his trachea was swollen while he was sick.  The swelling is gone and he's back to making noise.

All sorts of good things going on.  Still baby-stepping his way back to health.  But it's pretty steady progress.  Hey, I'll take that.

Always have an air of expentancy.
-Steven Richards

Sunday, April 28, 2013

Baby Steps and Really Cute Pictures!

Aaron continues to improve, although very slowly.  He's taking baby steps, which is okay.  My kids tell me he's really not still a baby, he IS almost three, but he still acts a lot like a baby.  I call him our "forever baby."  He has been stable on five liters of oxygen now for several hours, so it's coming.  It's just taking time.

Back in January, I was notified that a friend had nominated Aaron for a photo shoot through Olivia's Act.    I didn't even know anything about it.  One of the little victims in Newtown was Olivia Engle.  Her family had recently had pictures taken professionally and these became treasures in time that has followed. 

Just before getting sick, Aaron had his photo shoot.  Stacey did such an awesome job!  I just love these pictures of our little man.  Bare Baby Photography is out in Eagle Mountain and has a ton of really cute props. 

I got these in an email yesterday.  What a fun suprise to brighten the day while in the hospital.  I think Aaron was already feeling a bit off, because he wasn't nearly as animated as usual, but I these are just priceless.  Thank you, Stacey and all the other photographers that have given this priceless gift. 

Memories of our lives, of our works and our deeds will continue in others.
  Rosa Parks

Saturday, April 27, 2013

Wrong Way!

First of all, let me start by saying how grateful I am for family, both related by blood/marriage, and my special needs family.  Word went out last night that Aaron was really struggling, REALLY struggling, and messages of support and love just poured in.  I cannot express how much that means.

Here is what we know:

Aaron has been using too much oxygen.  Not super, super high, but higher than he usually is, and he didn't want to come down.  We're also not suctioning much of anything abnormal, no color, no plugs.  So no signs of his cold in that way.  His wheezes are pretty much gone, although sometimes his breath sounds are coarse, but he also can be clear.  And pulmonology is very happy with the way his x-rays look and his vent settings are.  His blood gasses which tell us how well the oxygen is being exchagned also look really good.  So what oxygen is getting down to the alveoli is being used.

I asked for a cardiology consult, feeling like the six liters of oxygen may be due to higher pulmonary pressures, where the blood vessels in the lungs are just too stiff and too tight to work well.  Cardiology didn't think so, so we compromised with if he was still at 6 liters on Monday morning, they would consult then, and we'd just sit tight over the weekend.  Um, once again, we forgot to ask Aaron what he thought.

Physical and occupational therapy came to see him at 2 p.m.  They had him sitting up and playing a piano.  He did seem to enjoy it.  His lungs, not so much.  He started desatting.  Not a whole lot, but into the high 80's.  He settled down at about eight liters about 5 p.m. and the nurse started paging the doctor.  Unfortunately, this was also at shift change for the attendings, so there was a bit of a lag and the a doc that didn't know him. 

At 5 p.m. his respiratory therapist came in to do his breathing treatment.  Most of the time, he's just been rolled side to side, but this time, he was sitting to make it easier to get the whole back.  And by the way, sitting for treatment isn't out of the ordinary, and usually he tollerates it well.  But he doesn't sit on his own yet, so sitting is hard work, even with some support.  Working hard when there's pulmonary hypertension involved?  Could be a problem.  And yep, it was.  He went to ten liters, and then 12. 

That earned him a pretty quick trip back downstairs to the PICU.  Shortly after we got here, he dropped back down to ten, and sometime during the night, he made his way to five, but now he's back on six.  But he's also resting, not working at all.  His breathing rate has been elevated, sometimes just a little, sometimes by more.  Heart rate has been pretty good, even after albuterol, these last few days. 

After thinking about it and talking to a respiratory therapist, the thought is that he had a pulmonary hypertensive crisis.  He has pulmonary hypertensive episodes from time to time, but those are easily managed with more oxygen and about ten minutes.  This was different as it took huge amounts of oxygen and he didn't come down for a long time.  Like, I went to bed about 10:30 and he was still on nine to ten liters at that time.

So we'll see what the rest of the day brings.  One of these days, I'll convince him that the play date is over and it's time to pack up the toys and head home.  In the meantime, I'm grateful for all the care that he's given, and all the prayers offered on his behalf. 

Quick update:
The team just rounded. They'll ask cardio to come in, we'll see what happens.  While six liters is a lot for him, he's not a candidate yet for some of the other interventions, like nitric oxide.  Where he's sitting right now, six liters, is about what the goal is for those who are already on nitric.  He would need to be much closer to needing 100%  oxygen in order for those kinds of things.  So in the meantime, they're probably sending us back upstairs, depending on how the floor team feels.  This just may be a long road as we let the oxygen do it's job of relaxing his blood vessels.  Rhinovirus just stinks.  "Just a cold" for him, is not "just a cold."  And yeah, if you've got a cold, you ARE sick.

Whether it's in the right way or sometimes the wrong way,
you learn about life and its lessons.
Amelie Mauresmo

Friday, April 26, 2013

Happy Boy!

Well, our happy bug is back.  (Excuse the lighting, it's awful, I know.  But the smile is priceless!)  Starting yesterday afternoon, he decided it was playtime.  And true to form, he played aaaaalllllll night.  Even his pulmonologist mentioned this morning that he thought he must be a teenager. 

His heartrate is down, he's smiling, sats are good, and his lungs are sounding pretty clear, too.  So what are we doing here?  Yep, it's his oxygen.  He's still needing six to eight liters of the stuff to maintain those good sats.  Can you say pulmonary hypertension?

So cardiology is also coming by.  We'll talk about what to do next, and it may be that we just stay here, giving him what he wants in the way of oxygen.  It is a great med for this, and there really aren't adverse side effects involved. 

It's also been nice to see some friends up here.  One was from home and stopped by for a visit with a bag full of goodies.  The others are also special needs moms and are up here with their own kids.  Two I hadn't even met in person before, but we knew each other through social networking.  But mostly, mostly I'm just glad to have my happy boy back.

A smile is a curve that sets everything straight.
Phyllis Diller

Thursday, April 25, 2013

Good News, Bad News

The good news is, his blood is boring.  It's just sitting there, growing nothing, being very unproductive in the lab.  And it's been over 36 hours now, so we're in the clear on that one.  The bad news is, he's demanding more and more oxygen.  Yep, it's his drug of choice, and as far as that goes, it's a pretty good one.  But needing so much?  Yeah, maybe not so good.

7:00 p.m. Wednesday, April 24th.
The Elders just stopped by to see if we needed something.  I asked them to give him a priesthood blessing.  I am so grateful for the power of the priesthood in our lives, for the tender mercies of the Lord. It was a beautiful, simple blessing that brought tears to my eyes and comfort to my heart. 

It’s a little hard right now.  I had anticipated going home this morning, and then last night his blood cultures grew out staph and it was too soon to be able to label it as a skin contaminant.  But it’s now been more than 24 hours and so far, nothing is growing, so we should be able to go home tomorrow.  Except he’s spent most of the day needing 4+ liters of oxygen.  And for the last two hours he’s been at six or more.  So now I’m beginning to doubt tomorrow. 
It’s 6:30 a.m. on Thursday, April 25th, and we’re not going home today.  He’s asleep right now, finally.  He’s been up with just some scattered naps for most of the past two days.  He’s sooooo tired, but keeps waking himself with coughing.   His blood hasn’t grown out anything yet, and it’s been over 36 hours.   So I think we can cross that off our list, but his oxygen, it’s not looking so great.  He was on six liters all night, just to maintain low 90’s sats.  Now he’s in the mid 90’s, but we had to bump him to eight liters an hour ago.  This is not trending in the right direction.  So instead of packing for home, I’m hoping we stay right here.  Because if we don’t, it will be because we’ve been shipped back downstairs to the PICU.  I wish I knew what was going on inside him, why it is that he’s not processing his oxygen right.  But I’m also really glad we didn’t go home yesterday. 

And as always, we’ll keep trying to figure things out.  There’s something more going on, not sure what, but we’ll figure it out and move forward.

On occasion we need to make a second effort - and a third effort, and a fourth effort, and as many degrees of effort as may be required to accomplish what we strive to achieve. -Thomas S. Monson

Tuesday, April 23, 2013

It Would Be Okay If Mommy Intuition Was Wrong

Spoke too soon, too loudly, whatever.  Long and short, we're not going home on Wednesday. 

Can I tell you how often I second guess myself?  I waffled about bringing him up here.  I worried about if I was putting him through something unnecessary when I wanted a good IV.  I've had a sinking feeling in my stomach that we might be missing something.  Yeah, well, still hoping the last one is just nerves.  And this was all just in the last four days.

You already know from recent posts (and the fact that we're still here four days after showing up via ambulance) that I was right about bringing him in.  And another hour at home would have made it very obvious, too.  Although it might have also earned him another chopper ride at that point. 

The IV, I don't think I've told that story.  When he got here, he got a scalp IV.  I'm told that most parents don't like them.  I guess it can be kind of freaky to see an antenna sticking out of your baby's head.  But the first time I was able to hold him, at four days old, it was precisely because of an antenna like that.  They had pulled the other lines and only had a peripheral IV, so it was safe to hold him.  And it's pretty easy to find a good vein on his scalp, where it can be really hard anywhere else.  And I'm just not into holding my baby while he cries and someone tries to find a good spot.  So I'm kinda partial to the scalp IV.  And that's where they put it, really easy.

But the little monkey pulled one on us.  On Sunday night, he'd been asleep, so we weren't watching that closely.  He reached up and pulled it out, slick as a whistle.  He thought it was pretty funny, and yeah, it was still a good one, so there was blood everywhere.  His nurse got the okay to not put one back in because we were heading to the floor the next morning.  IVs are pretty much mandatory in the PICU, but not necessarily on the floor.  I wasn't comfortable with that, because if he did start to struggle, that really wouldn't be a good time to be hunting for a vein.  So as mom, I requested that they put one in anyway. 

It wasn't fun.  I really felt bad, especially since the doctor and nurse didn't think it was that necessary.  And it hurt, he cried, he screamed, he looked at me like, "why aren't you stopping this?"  And all I could do was cradle him and say, "I'm so sorry, so sorry."  And wonder if I was putting him through unnecessary pain for my own peace of mind. 

That one, well, we didn't really need it, at least while it was still good.  It was in his foot and in spite of a lot of taping, he did manage to work it loose and out before it was needed.  But when they came to put another one in, it went in with one poke and no tears.  Hey, I'll take my victories where I can get them.

Now, here's the part about how we're not going to be heading out right away, and where I guess my intuition was at least partly right.  And where maybe (but really hoping it's not) the pit in my stomach has been coming from.  Among other labs pulled, they pulled blood cultures.  This is where they check blood cells to see if there's any infection growing in the blood stream.  The hope is that they just sit there, not growing, just being boring.  But apparently Aaron doesn't do boring.  They're growing.  And they're growing a particularly nasty bug called staph.  It's possible, and we're hoping, that somehow the sample got contaminated.  The strain that's growing is pretty common to our skin.  But the problem as the lab sees it is that usually it takes at least 36 hours for a contaminant to start growing.  His doctor was notified that staph was growing at just under 20 hours.  

So they quickly repeated the culture and we hope to not see anything tomorrow or the next day.  But that IV that I wanted?  Yep, it's being used now for some pretty strong IV antibiotics.  Because if he does have a staph infection in his blood, we don't want to give it another 24 hours to grow stronger before we start trying to kill it off.  Because blood, you know, it kind of travels throughout the body. 

You know, sometimes it would be nice if the Mommy Intuition was way off base.  Sometimes I think being wrong, really wrong, might be okay.  Being right can be way over-rated. 

Sometimes there are no explanations.
All you have to do is follow your heart and hope you made the right decision.
-Anne Frank

Be Vewy, Vewy Quiet

I'm being vewy, vewy quiet about this.  Kind of like when Elmer is hunting wabbits.  So shhhh.

We might be coming around the corner.  His breathing treatments have been spaced out to four hours as of this morning at 2:00.  Last night, he was more like himself, alert and interactive if not quite happy. 

But this morning, he's restless again, and while his lungs sound a bit better, his heart rate is higher and he's a little less stable on the oxygen.  Nothing way out of whack, but enough that I'm not feeling that final home stretch yet. 

We ran some more tests because he had a low-grade fever again and was still really wheezy, even with all the treatments.  His white blood count (measures infection) is higher, but his CRP which measures how his body is reacting to stress, is lower.  Go figure, he's still got us guessing.  His x-ray also looked a lot like him, patches of clouds where the tissue isn't all the way open. 

So we'll consult with pulmonology and also with the wound care team today.  (That dratted sore that he STILL has on his g-tube stoma.)  Also, I'll try to pick the home vent coordinator's brain about where we go from here once we do make it home. 

Don't give up, don't you quit. 
You keep trying, you keep walking.
There is help and happiness ahead...
Trust in God and believe in good things to come.
Elder Jeffrey R. Holland.

Monday, April 22, 2013

Spinning Our Wheels

We made it to the floor today, actually at 7:00 this morning.  He continues to need to be here, though, with no end in sight right now.  He catnaps all day and is fairly sad.  He's still needing his breathing treatments every two hours.  Plus, this afternoon, he's going higher on his oxygen again.  I think the lack of sleep is probably playing into it.  He hasn't had a good nap all day, which is pretty typical. 

We're now also looking into repeat labs and possibly another x-ray.  I'm wondering if his pulmonary pressures are higher, too.  They always have been when he's sick.  He's also had a low-grade fever today.  This virus just doesn't want to let him go.  And he's miserable.  But we keep on trying.

Courage doesn't always roar.
Sometimes courage is the little voice at the end of the day that says,
"I'll try again tomorrow.”
― Mary Anne Radmacher

Sunday, April 21, 2013

Plans and Changing Plans

Well, we think we know what's going on.  He has reactive airway disease.  That's what they like to call asthma before a kid is about seven years old.  The difference is that the lungs continue to mature and so they can (possibly) outgrow it, so they don't like to put the asthma label on it.  But this, we already knew.

It looks like we're seeing his first exacerbated episode, exacerbated by that darn cold.  He's doing okay.  And yeah, it's okay, not great.  When we got here, he was a mess.  They hit him hard with a bunch of steroids to open him up, and he improved a whole lot.  Since then, nothing else really has grown out as far as bacteria, but he's still struggling with his airway.  He was getting breathing treatments every two hours, and they tried to space them to three.  Yep, my little guy likes the attention.  Every two hours, okay.  Three, nope, not seeing the respiratory therapist enough. 

But they can do that on the floor, so the decision was made to ship him upstairs.  Aaron didn't like that, and apparently they forgot to ask him.  So he figured out how to tell them he really preferred being downstairs where the action is.  Right before we transferred, he started wheezing more.  He was given more albuterol, but continued wheezing.  Plus he added in head bobbing to his retractions.  (Both signs of working too hard to breathe.)  Sooooo, we're not moving, at least to the floor. 

This past week he has looked pretty good in the morning and then as the day goes on, he gets more tired, works harder and struggles more.  That I don't understand.  I mean, he's in bed.  If I was feeling lousy, I'd just go to sleep.  He just asks for more and more oxygen and stays awake.  How like a two-year-old is that to fight sleep?  And that's exactly what he's done today.  We were joking that tomorrow we ought to ask them to round on him about 4:00 p.m. instead of in the morning.  Then we could get a true picture of how he's doing and make a better plan.

So for now (and don't forget the "changing plans" part of the title), we continue breathing treatments.  When he can do well with the treatments spread out by four hours, and he's under three liters of oxygen, we can go home.  Until then, we'll be hanging out with all his buddies up here at his second home.  But at least for now, I'm thinking I like the idea of it being an asthma exacerbation than a pneumonia, especially since we seem to have the ability to control it, sort of. 

Smile, breathe and go slowly. 
~Thich Nhat Hanh

Saturday, April 20, 2013

Done Playing Games

Okay, so we're back.  Aaron has had a cold most of the week.  I thought it was getting better.  Back on Tuesday afternoon, I had to give him albuterol to open up his airways.  On Thursday afternoon, he spiked a fever.  Otherwise, he's been a little higher on his oxygen but no other fevers.  We have had to suction a  whole lot more than normal, but I expect that with a cold.  (And by the way, his first labs are back and guess what?  He tested positive for rhino-virus  yep, that cold.)  We've also had to use a LOT more oxygen when he's had gas, but have also dropped back down to where he belongs pretty quick.

This morning, he was struggling again.  He was high on his oxygen, with a lot of gas bubbles, and really upset.  So I gave more albuterol and some Tylenol.  He settled down and went right to sleep, and that's where I left him when I went to soccer.

As we were on our way home from the game, Deborah called.  Aaron was awake and crying.  And she was suctioning blood.  Yeah, blood, not good.  And it wasn't red, fresh blood (is this too much?).  It was brown. For those who don't know, color in the lungs isn't a great thing.  Yellow/green usually mean some kind of a virus, and yep, we've seen a lot of that this week.  Brown?  Pneumonia, usually.  

I have to admit, I still waffled a little bit.  He was still pretty okay on his oxygen, and we didn't have a fever.  But then he got a little less okay, and a little less after that.  So I threw my hands up, said, okay, we're done here, and called 911.

Good call.  By the time they got there, we were on 8 liters of oxygen (baseline is 1-3).  He did okay on the way up to the hospital, but we suctioned a whole lot.  By the time he got in here, he wasn't moving much air at all and he was running a fever.  They hit him with a bunch of albuterol and some bag & suctioning therapy.  By the time we made it to the PICU, he was actually looking pretty good, although still sick.

So now we're waiting to see what all he does.  He's sick.  We know that.  Where he'll go from here and for how long, that's the big question.

On another note, the paramedic said something that actually made me feel really good.  They got toned out Delta (pretty severe call) for a three-year old (almost) in respiratory distress.  That was all they were given, so he was running through various scenarios in his head on the way.  When they pulled up at the house, he said he felt much better because he knew that mom had this one and all he had to do was what he was told.  To inspire that kind of confidence in someone who helps keep others alive made me feel good.  I'm so grateful for all those who have taught me so that I can have things in hand, as much as Aaron will allow anyway.

Healing is a matter of time, 
but it is sometimes also a matter of opportunity.

Wednesday, April 17, 2013

Cruddy Cold

Here we go again.  Aaron and I have both managed to come down with a nasty cold.  This time last year, we spent ten days in the PICU fighting for his life, and we probably should have stayed longer.  Yeah, because of a cold.  I rarely rant on here, but that one caused me to write this.   The next few days, the attending was shaking his head and saying things like, "I don't know what else we can do."  Not words a mother EVER wants to hear. 

I don't think we'll be going that round again.  At least, I hope not.  For now, I'm able to support him here at home.  He's junky, but we can clear his lungs after suctioning.  He's using more oxygen, sometimes a LOT more oxygen, but we can come back down to close to his baseline.  We're also giving him albuterol as needed.  It's still sometimes hard to tell if he needs it.  And if he doesn't need it, it will actually make breathing harder, not easier.  See, albuterol relaxes the airways and opens them up so breathing is easier.  But if the problem is that they are already too relaxed, floppy, then it makes them even floppier.  Yeah, see the fun?

I did finally call up to the hospital and spoke to C.  She is amazing.  I just wanted someone to double check my thinking.  I had already increased the PEEP on his ventilator back to where it was before we took the most recent step towards weaning him off.  When he's sick is certainly not the best time to be challenging his lungs.  She agreed that for now, we're probably just fine staying home.  If he ends up on 8-9 liters (yeah, I did say sometimes it's a lot more) for long periods of time, we'll obviously have to head in.  In reality, if I can't get him below 6 liters, we're probably on our way.  And I also really appreciated that one of the first things she asked was how I felt things were going.  She knows, but reminded me, that if I'm not happy with things, I know how to get help and get up there.

But on the positive side, he's still smiling.  I have to laugh (except it makes me cough), I'm the one with the drugs to help me feel better, but he's the one smiling.  There's something wrong here.  I guess it's that he fully appreciates being alive, and maybe I need to work on being more grateful for daily breath. 

Oh, and by the way, that trach stoma that we're watching, well, we're still watching it.  But it's bleeding a bit every day, so we'll probably have to do something about it soon.  

So I'll try to keep everyone posted.  Hopefully, it will be another few days and we'll both be feeling better.  I apologize for not having a picture.  I've discovered that I need to be watermarking them because some have been "borrowed" for other purposes that I have nothing to do with.  And frankly, I just don't have the energy to do that right now. 

Here's praying that Lone Peak EMS gets to sleep soundly all night, and have a boring day tomorrow.  I'm hoping that no one has an emergency, but I'll be honest, mostly I'm hoping that WE don't need to see them.  They're great, don't get me wrong.  But I'd rather just wave at them in our local parade.

A family is a unit composed not only of children 
but of men, women, an occasional animal, 
and the common cold.  
 – Ogden Nash

Thursday, April 11, 2013

Thinking Can Me Feel Sick

Okay, warning:  for those that haven't figured it out, I often write for my therapy.  You know, much cheaper and more readily available that conventional therapy would be.  This is one of "those" kinds of posts.  You may want to stop reading now.

Yesterday I wrote about Aaron's granuloma.  I actually did write after we did the trach change.  But it's that very trach change that has been weighing on my mind.  So I need to get it out.

From the time I can remember, I've been a worrier.  Now, I think that if you're just worrying, that's not necessarily a good thing.  But if your worries lead to plans of what to do if the "what if" happens, well, that can be good.  It's called being prepared.  And if you have no idea how to prepare for something, say a zombie invasion, just refuse to think about it.  No problem, right?

When a person is trached, they need to always have a second identical trach around for emergency changes.  And you do use that trach just for the routine changes, too.  But sometimes, the trach doesn't want to cooperate (because it's obviously never the person's body that has an issue, it's the trach).  So in that case, you're also supposed to have a back-up, slightly smaller trach.  Because without an airway, well, it's not a good thing.

We've occasionally had a trach that was a little more difficult to get in, but it worked out anyway.  Yesterday had the potential to be a bit more "interesting."  Because of that granuloma that we can see on the outside, there's a decent chance there's another on the inside.  It was unlikely to cause a problem since we've been changing it regularly (every two weeks), but the possibility was there.  So, in addition to prepping his replacement trach, I also got out not just the one size smaller, but the one smaller than that, too.  And I asked for back-up, too


I haven't had a "helper" for trach changes now since just after he came home.  Not that I couldn't have one, I just didn't need it.  Last night, William came in with me.  And while it needed to be said, so he knew what was going on, it was a little unnerving to vocalize what needed to be done.  "If this trach doesn't go in, then I need you to hand me that one.  If that doesn't work, then this other one here.  And if that's not going in, I need 911 and tell them to be ready to intubate as they walk through the door."  And in my mind, I'm going through the steps needed to keep him alive until they get there.  Did I say that thinking makes me feel sick?

With both prayer and training on our side, the change went well.  Except for a lot more blood than I've seen in a long time, it was one of the easier changes.  But the thinking part, the planning part, well, let's hope that I've now got it written down, it will leave me alone.

In our family, we have a saying that "some things, Mom just doesn't need to know."  Now, probably not really true, but it refers to things that gives a mom gray hairs (and I have plenty already, thank you!) that turned out okay after all.  I think perhaps, knowing how to keep your baby alive and breathing might be one of those kinds of things.  Not that I'm not incredibly grateful for that knowledge.  I am!  But I think I would find it a whole lot more fascinating if it wasn't in regards to my own child.

The larger the island of knowledge, the longer the shoreline of wonder. 
 ~Ralph W. Sockman

Wednesday, April 10, 2013

Our Amazing Bodies

We have amazing bodies.  They run well and fairly efficiently for many years.  They get hurt, but in most cases, repair themselves without any help.  Even when they need help, they do the majority of the work on their own, just needing stabilization or similar crutches while they fix themselves.  Sometimes, they work a little too well.

When you have a scar, it's because the body has worked really hard to knit itself back together again.  That's part of why it's bumpy.  The blood vessels come together and work to create new tissue.  The body doesn't like holes, not even ones we think need to be there.  Yeah, like the surgically created stomas.

When it was still the size of a pea.
So what does the body do?  It tries to close it off.  Fortunately, with a stoma, there should be something in the way preventing that.  But it doesn't necessarily stop trying.  We've been really fortunate so far.  Aaron's g-tube stoma would like to close.  He's actually had a small open sore on it for almost two years.  Yeah, a long time.  It bugs me but doesn't seem to bug him, oh well.  His trach stoma has been fantastic.  Really no issues there.  He's had some occasional tears, but they repair themselves nicely and then stop there.  Until last week.

Yep, last week something changed.  Who knows?  Maybe it's getting spring fever and decided that with everything else growing, it needed to put forth some effort.  Over the last week, he's developed a granuloma, a collection of tissue at the base of his stoma.  I noticed it when it was about the size of a pea.  I know it wasn't there much before I saw it because we'd been in the hospital and his whole body had been inspected, by multiple people!  I know we didn't ALL overlook it.

Within the week, it became blueberry sized.  It has shrunk a tiny bit now, but the question is, what's on the inside that we can't see.  He has quit tolerating his speaking valve.  He's gone back to the "I don't know how to breathe with this thing on, HELP!"  Which may also indicate that he's got tissue growing in there, too.  We did a trach change tonight (routine, not emergency) and it went fairly well, although with a lot more blood than we've seen in a long time. 

So what's next?  Probably a trip north for a quick revision and scope.  They'll take off the outer one and look to make sure we don't have it inside as well.  Fun and games.  They never end.  But really, it is pretty cool this miracle we call a body, how it can do so very much.

The human body is a machine which winds its own springs. 
~Julien Offroy de la Mettrie

Friday, April 5, 2013

Hold Them Close

My heart is breaking.  On Wednesday, (April 3rd) this sweet girl, so very full of life, stopped breathing.  She was without a heartbeat for 30 minutes.

Currently, she clings to life with a very frail thread.  Please hold this family close in your prayers.  Hold your own children close.

Intellectually, I think we all know anyone could be called home any time.  But over the past almost three years, I have seen it up close and personal too many times.  Too many butterflies hung on doors in the PICU.  Too many families who were playing, laughing, carefree just hours or days earlier, with no clue that life was getting ready to change so drastically.

Hold your loved ones close.  Make time for them.  Make sure they know they are important to you.  We never know when that time is going to be gone.

If you want Kenady's full story, or to send a note of comfort to her parents, click here visit her Facebook page.  I don't think we realize how much even a stranger's prayers mean until we're in such a tenuous position.  May God hold them in the hollow of His hand.

Update: Saturday, April 6

Today, Kenady and her family gave the ultimate gift of life in donating her organs.  Amazingly, her heart went to a little boy right in the same hospital.  He had been on the transplant list and now has a beautiful new heart.  If you're inclined to follow, his public Facebook page is here.  

Wednesday, April 3, 2013

It's Quiet Around Here

It's become really quiet around here.  Really, really quiet.  Through January, we had all nine of our kids under our roof, well, most of the time.  At least when they weren't at school or work or a million other activities.  Tonight?  I've got three.  Yeah, down by two-thirds.  In her defense, Deborah is at work tonight, and she'll be back in the morning to sleep, which will bring me up to four.

David left the end of January for his LDS mission to the Oregon Portland Mission.  He's serving in a town called Molalla and seems to be doing really well.  His emails each Monday are short and to the point, but trying to read between the lines, he's growing so much.

Early Monday morning, William loaded up the three oldest of our remaining boys along with a bunch of other boys and seven leaders and drove to South Dakota.  These kids are spending their spring break doing service projects on the Sioux reservation up there, one of the very poorest counties in the United States.

And then there's today.  Today, we dropped Mary off at the Missionary Training Center where she'll spend the next two weeks.  After that, she fly to the Canada Vancouver Mission and be assigned to an area in British Columbia.  That mission takes in almost the whole province of BC, so it will be fun to see where exactly she ends up.  And that leaves me with the three youngest.

I didn't cry, really I didn't, when we dropped her off.  As we drove in, she heard me catch my breath and warned me in no uncertain terms that I was not to cry!  She was done crying, she wasn't going to do it anymore, and so I wasn't allowed because then she'd start.  But while my kids came into our home very fast (the first three in less than two and a half years), they're leaving even faster.  And this was not a scene I imagined all those years ago when I still had all three in diapers.

Mary has spend the last few days cuddling a lot with Aaron, and he has been so responsive to her.  They've taken several naps together.  I watch as he curls up against her and wonder, does he recognize her need for him?  Will he still be here to do it when she gets home in 18 months?  How can we cope if he's not?  So now, now that she's gone and the house is quiet, now is the time for tears.

Aaron has been on a bit of a roller-coaster the last few days.  But it's just been a baby one.  Not like the monster-scary ones that he sometimes likes to take.  His heart rate has been a little higher, he's needed a little more suctioning, and his oxygen hasn't been quite as stable as I'd like it to be.

It leaves you wondering, how many scenarios can go through your head in a very, very short time?  Is he sick, again, still?  It's been ten days since he first got sick, just about the length of a virus.  Has he not been getting enough fluid?  Yeah, I checked that one out and according to charts, he was being short-changed by about three to four ounces considering his weight.  So I recalculated his fluid/calorie intake to adjust for that.  Is it that we've lowered the support on the ventilator, and can he tolerate the new settings?   Is he just needing some time to get used to them, or is it more than his already scarred and fragile lungs can handle?  See what I mean about a myriad of thoughts?  That took me much longer to write out than it did to think of them.

Fortunately, today he seems to have settled down.  He's still pretty tired, but his nurses tell me he's not sleeping much at night, so I guess he's entitled to be sleepy during the day.

This last Sunday was Easter Sunday.  I am so grateful for the reality of that Easter morning over 2000 years ago.  So grateful for the knowledge of the resurrection.  I think I've always believed in it, but when holding a child close that you won't get to keep, when letting an older child, or two, go away for an extended period where you won't be able to hold and protect them, it brings new meaning to life.  It requires a deeper, more personal searching and knowledge than I've given it before.

I love Easter eggs, particularly the red ones.  Red is the color of death, and the egg the symbol of life.  I love the symbolism of life coming out of and through death.  No matter how dark the Fridays of our lives, Sunday will always come.

I'll leave you with a (very short!) video of Aaron with his Easter Eggs.  He thinks they were maracas! 

 And if Christ had not risen from the dead, or have broken the bands of death 
that the grave should have no victory, 
and that death should have no sting, there could have been no resurrection. 
But there is a resurrection
therefore the grave hath no victory, 
and the sting of death is swallowed up in Christ.