The Yuck, Again

Unfortunately, this sign doesn't
protect him from those who live
IN our house.

I don't know if I'm just more aware of sickness now that I worry about Aaron, or if the past couple of years have hit harder than usual with the stomach bugs.  We don't get them that often, in fact not often at all.  But where in the past, one or two would get it, now when it moves in, it makes itself comfy and tries to get to know as many of us as possible.


The day after Thanksgiving (so exactly one week ago), these lovely germs decided to pay us a visit.  Because it was a holiday weekend, everyone was around so we'll count everyone.  That's 11 of us for those who don't usually count except to say we're "a bunch."  And it's been through seven of us.  We generally try not to count Aaron, because at the first sign we at least attempt to quarantine him as well as whatever person the sick is currently inhabiting.


Wednesday was my turn.  But Wednesday, we (Aaron and I) were supposed to be at an EMS pre-conference seminar.  There's an annual EMS conference held here where paramedics, EMTs, law enforcement, dispatch, etc gather.  And we were invited to come up to play guinea pig for paramedics and EMTs to get some hands-on experience with Children with Special Health Care Needs (yes, it's an acronym: CSHCN).  I actually was trying to come up with a way to go as late as 5:00 a.m. (when I wasn't sleeping because I was so sick) but decided that if I was having a hard time climbing the stairs without falling down, it wasn't a good idea.

I'm really hopeful that we're at the end of this.  Deborah, who is our resident vampire (works graveyard shifts) really isn't around much to be contaminated.  Mary is back at school without having caught it.  And somehow, somehow, Joseph (who shares the room with the original germ spreader) has missed out.  And of course, Aaron.  He's starting to be pretty junky in his lungs, but I'm holding out for that being just an effect of the weather.  Please keep him in your prayers.  I'm dreaming of a HOME Christmas, all month long.

“Oh, there’s no place like Home for the holidays...”

EMS Tips

Here are some of the thoughts I've had going through my head about our EMS (Emergency Medical System: Police, Fire, Paramedics, etc) and me as a consumer. (And yes, we've gotten to know them well in the past few years. I think the term is "frequent flyer," or maybe "professional patient".) And let me preface this by saying that Lone Peak Fire District is awesome! It may be that the way they work and interact is standard across the industry, but I frankly don't know (which is just fine, by the way). I just know I think we've got some of the best, most compassionate people working in our area, and we're really grateful for them.

When I call 911, I want exactly what anyone wants.  I want them to swoop in on their shiny red trucks, wave a magic wand, sprinkle a little pixie dust, and make everything all right again.  I did see this once, when an elderly gentleman took his insulin but didn't eat soon enough.  The magic wand was an IV and the pixie dust was put in the line.  A short 12 minutes later we were on our way and everything was normal.  But that's not going to happen with Aaron.

When I call 911, I'm going to stay in control, but barely.  See, if I lose it, I know dispatch won't be able to understand me.  But that's my baby, my heart and soul that's struggling to breathe.  So I'm scared.  And when, finally, forever later (like three minutes) you guys get here, I will be soooo glad to see you.  But I'm still scared, so I'm probably not thinking completely clearly.  Since you need to know what meds he's taking, you probably need his chart, or if I don't have it, then his medicine bottles, 'cause there's a pretty good chance I may forget something.  

Please give me something to do, anything.  I want to help.  It may just be warming a blanket in the dryer to help protect him from the cold.  And talk to me.  Tell me what you're doing.  If he needs an IV, I know where you're most likely to find success.  And I can help hold him.  Heaven knows, I've done it enough in the hospital.  And he knows me, which will help him relax, too.  If you ask my permission, even for something like an IV that must be done, I'll feel like I have some input.  Yes, of course you can cut his clothes off, but if you ask as you're doing it, it can help me.  And while I'm not your patient, my sense of control and well-being will transfer to him.  So if you ask me if you can shave his head, no problem.  Heck, I'd let you shave my head if you though it could help him.  

Please, let me stay with him.  He's my baby, my little one.  No matter how old a child gets, when they're sick or hurt, they're still a baby to mom.  And if my child is medically fragile, YOU want me near him.  If I'm in the back with you, I can tell you if he's just trying to burp (a no-big-deal that's freaked out doctors and respiratory therapists), or if that slight mottling that doesn't look like much really is a very big deal.  If I'm following behind, or in the front of the ambulance, I won't know, and neither will you.  

Ask me what I need to have at my fingertips on the ride.  Ambulances are well-stocked machines.  They're great!  But in an already dicey situation, it's nice to have exactly what you're used to working with.  And while a syringe of saline will work in a pinch to clear a trach, a saline bullet is just that much easier.  And we don't even want to think about having to exchange a trach for an ET tube.  But I carry all that plus much more with me in his emergency bag.  And I know exactly where it is.

Aaron with some of our local heros at his 1st birthday.

But mostly, if I forget to say "thank you," please know that I mean it from the bottom of my heart.  I hope I don't forget.  I really do.  Because I am so grateful for all that you do.  While you may not have a magic wand or pixie dust, you do bring hope and help.  And when you leave a nice warm bed to come to my son's rescue, there is not much that could mean more to me.  You'll even tell me that it's okay, you were about to get up anyway.  But I know better.  Because even paramedics don't get up at 4 a.m., unless it's for the tones.  So thank you, from a grateful mom (who thankfully hasn't seen you for a while!) and her family.  You are our heros.

"Human beings are made up of flesh and blood, 

and a miracle fiber called courage"

-George Patton 

Firsts and Lasts

In our lives, we track the "firsts" so very well.  First breath, first tooth, first day of school.  First date, first job, first baby.  The "lasts" seem to be less obvious, less marked.  While we do mark the last day of school (graduation) how many of us realize that last tooth falling out?  Or the other "lasts?"  So often, they pass us by without our realizing that it is the "last."  The last time we play on a soccer team, or the last time we wear a certain outfit.  Or the last time we see someone.

In this way, I feel fortunate.  I know this is the last Thanksgiving I will have for a long time with all my children.  See, next year, Mary and David will both be on their missions.  Shortly before they come back, Jonathan will be on his way.  And then when he comes home, Matthew will be gone before the next Thanksgiving, and then Joseph.  There's a slightly larger gap between Andrew and Joseph, so there's a chance that for one year, they MIGHT all be here, baring jobs, other family obligations, etc.  But that is the year 2020, the year Aaron turns ten.  And we have no guarantee that he'll be here on earth for that celebration.

So in so many, many ways, I am grateful for this last holiday season that we get to celebrate as a family.  This year, it's just us, William, me, and our nine kids at the Thanksgiving table.  And I'm hoping it's perfect.  My perfect.  Which means that there may be spills, but I'm hoping no tears.  The mashed potatoes will probably be a little lumpier than some would want, but there will be laughter. 

This morning, Aaron came into the kitchen and hung out "helping" while I made the stuffing and prepped the turkey.  Mary made the pies yesterday.  Rolls (yeah, store-bought frozen dough this year) are rising. 


So "Tom" finished baking a little early, but that's okay.  At 4:00 p.m., we'll all gather round the huge table my parents made for us a couple years ago and give thanks.  We'll be thankful for silly things and touching things.  But mostly, just that we are blessed to be together.  And for this meal, I'm not going to care is someone only eats rolls and sweet potato casserole.  And for today, it won't matter if they don't finish all the food on their plate.  Because today, this memory, is going to have to carry us for a long time, and over many miles before we can be together again.  And only God knows whether that will be on this side of eternity or the next. 

And I am grateful to have that insight.  Today there are many who are without family members, and they didn't know last year that it was their "last."  So I'm grateful for the experience and knowledge that we've had over the past few years, the events that have taught me to be more vigilant, more cognizant of life's frailties.  And I'm grateful that we get today.

Mid pleasures and palaces though we may roam, 


Be it ever so humble, there's no place like home;

                                    John Howard Payne

Thankful Thought:

I'm afraid I've  let the daily thankful thoughts get away from me.  But today, I'm grateful for so much.  I'm grateful for a husband who loves me.  I'm grateful for nine beautiful children who try hard to do their best and are striving to live right.  I'm grateful for a warm, secure home with plenty of food.  I'm grateful for friends and neighbors, near and far who uphold us with their prayers, and give us someone to pray for, too.  I'm grateful for my liberty, for the soldiers who fought for it, and for their families who keep the home fires burning.  Mostly today, I am grateful for my Heavenly Father and my Savior, for the love They have for me and the many, many ways They show that I am important to them.

Busy Week

It's been a very busy week around here.

Joseph started homeschooling part time.  It's going pretty well so far.  His books all came on Friday and he's really excited about the material.  Here's hoping it continues that way.  So far, I'm loving the extra time we get to spend together.

On Thursday, Aaron went for a visit with General Surgery about his g-tube sore.  Of course, right now it's looking as good as it ever has been!  But he did get a chance to meet another surgeon and win her over.  (His original surgeon is now practicing at another hospital.)  Then we stopped in to see one of his buddies.  Little Paxton is missing a chromosome, is about two months younger and only lives a couple of miles from us.  We're thinking the two of them got together in heaven before they came and decided to have a party.  They're quite similar in the challenges they face.

Friday found him cheering for his brother at a wrestling match.  It was a hard fought battle and Aaron made his presence known by stretching and wiggling all the way through Jonathan's match so he could set off his alarms.  I don't think he alarmed much at all, except when his brother was wrestling

Andrew  & Michael checking out a warming
blanket.  I'm thinking we need one of those
for the basement bedrooms!

Saturday was Primary Children's Medical Center's surgical open house.  Every two years they open the OR wing to the public.  The kids get to check out the whole place, making play-do teeth, checking out neurosurgery, and even doing an "appendectomy."  It was really cool!

Michael placing screws in a skull.

Watching as an ultrasound machine
breaks up a "kidney stone"
(peppermint candy).

Working on his brain surgery technique on an egg. 

Michael trying his hand at the egg.

.

Andrew assisting Michael with an
appendectomy.

Michael reaching in for the "appendix."

Aaron's kind of figuring that he's
been there, done that, and you're
not supposed to be awake in the
OR anyway.  So he's checking out
while his brothers "operate."

But the highlight of the week was Wednesday.  Mary's mission call came!  She's going to be serving in the Canada Vancouver Mission and leaves for the MTC (missionary training center) on April 3rd.  The mission actually covers most of British Columbia.  She will have a great chance to see a lot of beautiful places.  There's a link to her blog (her dad called her his MissionMary many years ago) on the left side. Right now, it's just a couple of pictures and the video of her opening her call.  We are all so excited for her!

Missionary:  (n)  Someone who leaves their family for a short time that others may be with their families for eternity. 

O2 Anyone?

You know those crazy times when you forget to do something?  Or you do it and don't remember?  Yeah, I've had a few of those.  Okay, so more than a few.  Usually, it's no big deal.  It comes with the ADD (which, yes, I do actually have and struggle with).  So I've got my routines.  And some of them are because I've been "bit" before.

Like my oxygen tanks (or Aaron's, I should say).  I actually had a "bad" one back when he was tiny.  Fortunately, I realized there was a problem as we were driving by his oxygen place.  I walked in and told them I had a bad tank, a bad regulator, or a bad baby.  And they'd better hope it was number one or two, or we'd be calling an ambulance.  Talk about the deer in the headlights look on their faces!  They did not want to need an ambulance.  It was the tank, we got a new one, and went on our way.  AND I put a safety net in place.

Now we always carry a full back-up tank of oxygen, and I always "crack" or open the tank to make sure it's full and working.



NO, I didn't deprive him of oxygen to get this
picture.  I just played with the photo settings.
But this gives a little bit of an idea of what
he looked like.  His lips are still a little
pinker than they were in the car.

So here's the story.  On Saturday, I got out the oxygen for our trip to the movies.  I opened the tank to make sure there was more than enough oxygen for the trip.  Even though we carry a spare, it's much easier if I don't have to switch.  There was, so we were good to go.  Got everything ready, got his ventilator switched to an "away" mode, hooked him up and out we went.  And it was COLD!

We got in the car and I hooked him back up to his pulse/ox machine.  That's the one that measures how much oxygen he's got going round and round in his little body.  At least it measures it when it's happy, meaning that the probe is on right, he's not tightening his muscles too much, it's not being pulled, you get the picture.  Long and short of it, I've learned to look at the baby as much if not more than the pulse/ox.

So there we were, in the cold car, and the machine wasn't real happy.  Sometimes, I would get a reading for a minute or so, and then it would blank out again.  And the readings I was getting weren't great.  Like mid-70's to low-80's.  But I've also seen them before when it's trying to read.  So I'm also looking at Aaron.  His poor little lip was quivering, like he was cold.  But those little lips were also a bit blue, like when you're really cold.  I didn't think it was that bad.  He was covered in a blanket, with a warm rice-bag stuffed animal and a hat.

I kept checking everything.  Yes, the pulse/ox was acting up, nothing new there.  Yes, his oxygen was hooked to the ventilator (seen that one undone once or twice, or more).  No, it wasn't kinked.  Yes, the tank was turned on.  And frankly, except for his blue lips (I know, not a good sign) he looked pretty good.  His eyes were alert.  He wasn't upset.  Both signs that he wasn't in too much distress.  But I was getting there.  Not frantic, or even close.  But quite irritated that I wasn't getting good readings.

Same kiddo, same picture, normal coloring!
Love those pink lips!!

So I finally wondered if maybe the tank wasn't a good one.  Maybe there was a problem further upstream.  Nine times out of ten, when I hook up the tank to the vent, I turn on the tank first and hear the oxygen.  Well, apparently this was the tenth time.  I pulled the tubing off to see if I could hear the oxygen and . . . nothing.  Nothing at all.  Looked back at the tank that was more than 3/4 of the way full ten minutes earlier, and it was on empty.


This time I had closed it back off after checking.  And because I didn't listen when hooking up the tubing, I didn't realize it.  Talk about feeling foolish.  And wonder of wonders, when I cranked it on (and turned it up a little higher to help him quicker) those blue little lips turned pink!  Yeah, the nice rosy color they're supposed to be.  Turned out he wasn't cold after all.  Just oxygen deprived.  Oops.  It was (slightly) reassuring that he could maintain high 70's and low 80's without any oxygen.  But I don't think we'll be trying that again anytime soon.  Sorry, kiddo!

Breathing is the greatest pleasure in life. 

~Giovanni Papini

 

Thankful thought:
November 13th:  I'm grateful for all those who've helped care for Aaron, for his doctors and nurses and therapists, for family and friends who pray for him.  He's 29 months old today.  That's 29 months more than we thought we'd get.  And he has taught us so much.  Happy Birthday, little man!

That Old "Opposition In All Things" Concept

There's a cute poem about the fickleness of man.

As a rule, man's a fool.
Wanting hot when it's cool.
Wanting cool when it's hot.
Always wanting what is not.
Never wanting what he's got.

I think I'm playing the fool here.  I'm not sure why things seem hard right now.  There's no real "reason" but sometimes it is hard.  And I think it's important to acknowledge that life isn't always roses and chocolate.  I know the blessings are there, and they are so obvious!  But sometimes, sometimes, other feelings creep in, the reminder that while we are so blessed with the experiences we have, they are not the ones I dreamed of.

I walked into Wal-Mart the other day and front and center saw this incredibly cute musical bath toy.  How fun!  And then I remembered, bath time doesn't involve toys for Aaron, at least not ones like that. In fact, most of his "baths" are bed baths.  See, he really doesn't get dirty, and each bath in the tub has to be carefully done in order not to drown him.  He doesn't sit up well on his own, so toys like this just won't work.

Then it seemed like every single corner I went around had someone with a toddler.  Some were happy, some were cranky.  Moms were interacting or distracted.  And I can't COUNT the times I wished I could have just left whichever toddler I had at home while I did my shopping.  We always (or at least usually) tried to make the best of it, but frankly, shopping with a two-year-old doesn't make for the most calm, pleasant experience.  But Friday, on Friday, I was sad because my two-year-old will not be going to Wal-Mart with Mommy.  We won't ever share that experience.  And missing that normalcy was hard that day.

But we did have a fun "first" yesterday.  I got to take a nap with Aaron in his bed.  I've always napped with my two-year-olds.  Practicality, you know.  They needed a nap, they didn't want a nap.  It was simply self-preservation on so many levels.  With his new big bed, I climbed right in with him.  He was already asleep, but he smiled the cutest little smile when I climbed in and snuggled up to him.  We both needed this.

We also got to go to a Hopekids movie yesterday.  On the way up, I was remembering where we were a year ago, and some of the families I got to know.  I was thinking in particular about a little boy with Downs Syndrome who was also fighting leukemia.  He had to have a portion of his lung removed because of a fungal infection.  He was on the upswing when we were discharged but I know how hard a winter can be on someone who is already so compromised.  We got to the theater and just after we sat down, I saw him and his mom!  He was looking so good, still on oxygen, but obviously not in the PICU!

So along with the cold, dark feelings, there have been some wonderful bight, warm spots as well.  I don't do as well when it's cold and dark outside, so I'll cling to those good things and try to remember to count my blessings, at least as far as I can.  See, I've been given so many, I don't think there are numbers enough to name them all.   And it's through the opposing experiences that I learn to recognize the good.

“A kite flies against the wind, not with it.”

― Winston Churchill

Thankful Thoughts:

November 9th:  I'm grateful that Matthew and Joseph work so hard on their scouting merit badges.  Not only are they gaining the knowledge from the individual badges, they're also learning to budget their time and that they are capable of self-directing their learning.

November 10th:  I'm grateful for a husband who is willing to drive us to the movies in a snowstorm.  It was a fun family outing, and probably wouldn't have happened if I was left to drive.  I don't like driving in the snow.

Novembet 11th:  I'm grateful for for our veterans and for their families, for their sacrifices.  I'm especially grateful for my favorite veteran, my father, whose birthday it is today.  Thanks Daddy, for loving us, for teaching us, and for just being you.

Go!

Sleep Safe II Mahogany bed

 Ta-da!  Here it is!  Aaron is loving all the room in his new bed.  I'm loving that he can move around and play freely when awake but we can easily raise the head of his bed when he sleeps so that he doesn't drown himself when he shifts.  Also, doing his cares in this bed are SOOOO much easier on the back.  It can actually raise up almost to elbow height!

This was how I originally envisioned his room.  The vent and humidifier would stay on the table at the top of the bed.  The concentrator and wheelchair would be at the bottom, and his stander would be between the little table and his shelves.  It didn't quite work out that way, but at least I had an idea of where to start, right?

The way it's set up (at least for now).













A close up of the mobile.  He's already managed to tangle it up a few times.  I think that means he likes it.














Taken from the entryway, towards the foot of the bed.











Hangings above the corner chair.


















From the foot of the bed, looking back toward the doorway.



A beautiful butterfly hanging he was given for his birthday.  I love the way it sits in his window, a reminder of all his angel friends.

Growth is the only evidence of life.  ~John Henry Newman

Thankful Thought:  

November 8th:  I'm thankful for a son who works hard to organize his time and efforts to keep up with school, exercise well, and care about his friends.  You're awesome, Jonathan.  Love you.

Get Set...

Yep, I voted.  I may be young, but I know what I like.  I like Primary Children's Medical Center.  They take really good care of me.  I like my family.  No, I take that back, I LOVE my family.  And I'm so very grateful that I live in a country that gave me a chance to live.  But I also like this secret ballot thing.  Not talking about who I voted for.  But wanted you to know, I do believe in choices.

Yesterday morning found Aaron on the move again.  His bed was scheduled to come early afternoon, and all they asked was that there be a place to put it.  I don't get it.  Somewhere to set it up?  How unreasonable, right?

So to accommodate this request, the kids helped move Aaron and his bed back out of his room and to the edge of the family room, just like when we cleaned his carpet last month.

Here he is, just hanging out and waiting.

And his room.  Any guesses as to where we think we're putting the bed?

I have to come up with something to act as a mobile for Aaron.  His mobile is probably his very favorite toy!  He loves to bat at it, pull at it, and generally do whatever he can with it.  But it only fits on a railed bed, it fastens through the rails.  No openings like that on the new bed, so I got a clamp-on mobile arm and set out to create a mobile for him.

The Bed!

It's here!  This is the base of the bed, the part that performs all the "magic."  It will raise and lower the whole bed. It will raise the head, the foot, or both head and knees at the same time.  Basically, this is the brain of the whole shebang.






Here are the headboard, the footboard and the side rails.  I love the light mahogany color.  It's actually a pretty close match to the dresser in his room, and that was total coincidence.  When we refinished that a few years ago, Aaron wasn't even on the horizon.  We were just trying to redo a fairly ugly blue dresser at the time.

And....  The bed!  It's going to be wonderful!  The mattress is a super comfy one with a huge core of memory foam.  This picture shows the mattress raised all the way up and with the side rail down.  Much easier to put sheets on that way.

Now the trick will be to figure out how everything else is supposed to fit in here.  Stay tuned until tomorrow.  I'll have it figured out by then.

Success isn't how far you got, 

but the distance you traveled from where you started.

- unknown 

Thankful Thought:

November 7: Today I'm grateful that yesterday's voting worry was how long would it take. I didn't worry about getting shot at or encountering a suicide bomber. I didn't worry about massive bloodshed and civil war when January 20th comes. I knew that I would have the chance again, to go to the same place and vote in another four years, with basically the same immediate worries. So many in this world don't have that assurance, and I'm grateful for my small worries, and that I don't have larger ones.