I Think We Have a Winner!

It looks like asthma is the winner here!  Yeah, I know, not something most people are excited about.  But if your choice is between influenza and the plague, you take influenza.  Ours is between pulmonary hypertension (a known killer without a lot of treatment options) and asthma (also nothing to take lightly, but with a lot of options).  Yep, I'm pretty happy now.

We thought we were seeing some improvement yesterday with the albuterol treatments.  But they added in an oral steroid yesterday, thinking that if it was inflammation in the lungs, it would show pretty quick.  And it has, big time!  He's been sitting in the high 90's on one and a half liters of oxygen most of the day.  I can't say how thrilled I am with this!  He hasn't done this well in a long, long time.  And like I keep saying, when he breathes better, so do I.  I feel like we've been given a new lease on life.




And because it's Halloween, here's a look through the past few years.  His first year, he was dying, and we didn't even know it.  Plus, if I remember right, it was raining.  Nope, no trick-or-treating for him.








His second year was when he was first diagnosed with the asthma.  He was in the PICU and wore a really cute monkey costume, for about five minutes.  Then it was back to business as we tried and tried to figure out what was going on, 'cause we were still three days away from diagnosis.









Last year, Aaron got to wear the costume that all his siblings wore, the one I didn't even let myself think about before.  AND he went trick-or-treating.  Fun times.

This year, well, he's back in the hospital.  We can't decide if this is a dinosaur or a turtle costume.  The back kinda has a shell-like thing.  Anyway, it's super cute.  He grinned when he saw it.  And if every other year in the hospital is what we have to do, well, that means that he's still around.  So I'll take that.

When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile. 

~Author Unknown

What if it's NOT Pulmonary Hypertension??

There is a tale out of India about an elephant and six blind men.  Each encounters one part of the elephant and bases his assumptions of the whole on that one part.  We think, we're hoping, we're PRAYING that we've been playing the part of a blind man here.

Here's the thought process this morning:  what IF these problems, these challenges that we've been seeing the past six months aren't all related to his pulmonary hypertension?  What if they're NOT being driven by his heart disease?  What if, instead, they're being driven by his LUNG disease, his asthma?  

Yesterday morning, completely wiped out after a night
in the ER with labs and needle pokes and x-rays.

Maybe he's not declining like we've been fearing.  Oh, his pulmonary pressures aren't happy, that's for sure.  But what if the airways are inflamed and the pulmonary arteries and veins aren't happy because air isn't moving through the lungs like it should be instead of the other way around?  Maybe it's his lungs.  Yeah, great big "what if" and "maybe."  

So here's the thinking:  Aaron was doing very well all through the winter.  In fact, even though usually you don't make changes during the winter, he was weaning off the vent and was up to six hours a day without any breathing assistance.  Then in April, he caught a cold which sent his asthma into overdrive.  We spent almost two weeks trying to get it under control enough to go home and keep working on it for another month. 

Tonight, happy and playing.

But what if it still was not doing well?  I mean, up until then, we had used his albuterol twice in over a year.  Once was when he acted like he needed it, the other was when Alpine was burning and we were trying to make sure he didn't develop a problem.  Since then, I've used it a few times a month, four times in the last week alone, AND he's responded to it.  

And let's top that off with his history.  His first winter he was in and out of the hospital All The Time.  We didn't make it three weeks between discharge and our next admit.  But the second winter, he was only in twice.  Granted, those two times weren't fun.  They were about two weeks each in length for pneumonia and a pneumothorax (yeah, that one was fun).  Then his third winter, last year, not only was he not sick, but we were also weaning him off the vent. 

His oxygen saturation rate was being
really weird tonight, so I went to see why.
Um, we're supposed to be measuring the
oxygen content of his blood, not the air
around his bed...

But in the six months since his really bad asthma attack, we've been in and out much more than I'd like to be.  Couple that with I can handle a lot more at home than I used to and he's actually been much less stable there as well.  So, like I said, we're hoping and praying that it's asthma driven instead of pulmonary hypertension driven.  'Cause even though asthma isn't fun, there are a lot more treatment options for it, and it doesn't have to end his life on this earth.  And I'm just not ready for further progression of his PH.

So we're starting a three day course of steroids.  If he responds well to them, it will show that it is driven by the inflammation is his lungs and we'll add in another asthma control medication.  Please pray with us that this works.  Please pray that his time will continue to be lengthened out.  I have no doubt at all that he will be here just as long as the Lord has in mind.  I'm just praying that it's still a long ways off.  

I have been driven many times to my knees by the 

overwhelming conviction that I had nowhere else to go.  

~Abraham Lincoln

And the Bubble has Popped

Can I say, I HATE pulmonary hypertension?  I don't hate Trisomy 18.  Yeah, that may sound weird, but T18 has given us three-plus years with a perfect angel soul.  It has taught us so much.  But that darn PH, I'm having a hard time finding the joy in it.

Yep, we're back.  He's struggled more over the last week than I'd really like to see.  And things have been niggling the back of my mind for a little while, kinda like we were "cooking the frog" again.  A little higher on the oxygen needs, a little more trouble breathing when his head's not elevated.

And then there's been this last week.  Now, his demeanor has been pretty good!  He's had lots of smiles, happy, gone to school.  He has been more tired (yeah, see cooking the frog).  But here's the kicker.  I've bagged him three times in the past eight days, and had to use a rescue med four times.

So last night, when we bagged him to get him out of the mid-70's, and then he dropped back into the low 80's when we put him back on the vent, and then his rescue med only bought us another hour at six liters, I gave up and called for help.

And can I say, I am so grateful to be living in an age where we have the internet and online connections?  One of the medications he takes for his pulmonary hypertension is not widely used at all.  In fact, there is one pharmacy, back in Tennessee, that dispenses it.  And any time he's got a new med or anything happening, we need to call them.  So this morning, I called to ask about dosing information.  Guess what?  The pharmacist could tell me NOTHING about guidelines for prescribing for pediatric patients under 12 years.  It just hasn't been studied/used/whatever in that population.  But thanks to social media, I know of at least three moms whose kids, well under 12 years old, have used or are using it.  Yeah, I know Facebook is overused and there can be a lot of issues with it.  But when it comes to being able to connect with people who can bless your life, who you wouldn't even know about, it can literally be a lifesaver.

I'm so grateful we were able to take pictures last week.  Every fall, I drag out any child under 17 and make them take pictures with me.  (I figure once I've shelled out a fortune for senior pictures, they can be 17 forever, and are exempt from the yearly torture.)  I wish Aaron had smiled at the camera, but he was happy smiling everywhere else.  And the other boys had fun, too, once I pointed out that we could take pictures on the tire swing and they could climb on the bridge.  Here's a few of the very many pictures we took.  SOOOO incredibly grateful for good weather last week and that we took advantage of it.  

A good snapshot stops a moment from running away.  ~Eudora Welty

Button, Button, Who's Got the Button?

Feeling much better this morning.

Fun and games continue around here.  I kept Aaron home from school yesterday and today because he's continued to be "off."  Sunday evening I changed out his trach, yesterday I changed his filters and circuit on his ventilator.  There really hasn't been anything I could point to as the problem.  Just higher on his oxygen and a little (okay, sometimes a lot!) sad.  Yesterday, he actually acted like it might be a tummy bug, and there have been a couple others with it, too.  As far as germs go, that's actually an okay one for him.

See, other than not breathing as deeply because he's uncomfortable, it doesn't affect his lungs.  And frankly, my chunky monkey has a few calories he can spare.  So as long as his "outs" don't go faster than his "ins", he's okay.  He had a quite a few dirty diapers in about a 12 hour period from Sunday evening to Monday morning, and then he had a lot of tummy bubbles, too.

In fact, yesterday when I went to give him his 2 o'clock feeding, he looked really pale.  I thought, oh, no, here we go!  Then he started retching.  Once it was all over, he was still subdued, but acting (and looking) so much better.  At least better than before.

Yesterday evening, Michael's cub scout pack had a trip to the local fire station.  Yeah, we knew the guys.  I did warn them that they might want to try to sleep early 'cause he was on the bubble, and I wasn't sure if it was going to pop.

And then, because we weren't having enough fun yet, Ms. Grace (yeah, me again) had to miss seeing the curb as we left the station.  Yep, it smarts.  I managed to have enough presence of mind going down that I didn't try to catch myself with a locked arm. (Really great way to break your arm.)  But I did land on my left hand with my fingers splayed out and bent them back.  Nope, not broken, but very sore and swollen right now.  So I'm sporting a brace and trying to do a seven-fingered type.  This is SO NOT what I needed.  I really can't afford to take time off of work, but there's not much choice either.  I can't keep up with seven fingers.  Kinda need all ten for that.  So I've gotten an extension on my files due today and will be marked off for the rest of the week.  Really hoping by Monday that the pain and swelling have gone down enough to go back.  We need that paycheck.

This was taken a few months ago, but
you can see his button in his
upper abdomen.

And those guys at the station?  Well, if they got woke up, it wasn't us.  But I did get a call just after 3:30 a.m. Robin said he was in a lot of distress, and on my way out, I thought, "okay, here we go."  Turned out to be something we could handle though.  Somehow, he had managed to pull his g-tube button out.

See, we tell people that Aaron has two belly buttons, and one has a door in it!  That's how we feed him.  There's an extension we hook onto the button and the food flows directly into his stomach, bypassing his trachea/esophagus that isn't quite sure how to work.  

 Yeah, the button, the part that stays in him, or is supposed to stay in him, was out.  There's a balloon on the inside that's filled with water that keeps it in place.  It was full, but it still came out.  It's the first time he's managed to do that, (not that he hasn't tried before!), and it had to have hurt, a lot!  Fortunately, it hadn't been out for more than a couple of minutes and the new one went back in really easy.  That stoma (surgical hole) can start to close within five minutes and I'm so grateful we didn't have to take him in to have it dilated open again.

Then Aaron and Mommy had a long rocking time while he settled down to go back to sleep.  I love cuddling up with my bug.  And I love that really, since we bagged him on Sunday, the biggest excitement was easily something we could handle on our own.  Praying it stays that way.  And I think it will.  Right now, I'm planning on him going back to school tomorrow.  I know he misses it.

I am always ready to learn 

although I do not always like being taught.  

~Winston Churchill

How to Get Out of Church

I know a lot of kids (and a few adults) who try to come up with ways to get out of church, school, and anything else they didn't want to do.  I've seen the "normal" excuses:  headache, stomach ache, plain ol' too tired.  I came up with a few good ones on my own in high school (not telling what they were, sometimes my kids read this).

When you get do get to church, there's the eeking at a sibling, talking loudly, crying, screaming if nothing else works.  But not my Aaron.  Nope, he's got to do things his very own way.  Those are all way too tame for him.  He focuses on the breathing excuse.

Oh so happy through the vast majority of church, he decided it was too long today.  Fifteen minutes before the rest of us were done, he was done.  Heart rate in the 130's+, oxygen sats in the low 80's.  His oxygen tank was low, so I changed it out.  No dice.  Even on six, seven and eight liters he was in the low 80's, and even down into the mid to high 70's.  So I started bagging him and yep, he got to come home.

How's he doing now?  He's laughing and talking in his  bed.  And satting just fine.  So what does your kid do to get out of church?

If you don't want to do something, 
one excuse is as good as another.  
~Yiddish Proverb

Growing Up

How do you know when you've grown up?  The government seems to think it's when you reach the age of 18, unless you want to drink, then it's 21.  The dictionary defines it as fully grown and developed or mature or sensible.  Hm, I think with that one, we all know some middle-aged "kids."  That's okay.  It really is.

My oldest is now 22.  Her birthday was Tuesday, today is actually her due date.  And funny, back in 1991, the 15th was a Tuesday and the 19th a Saturday.  I can't believe it's been 22 years since they put that tiny baby girl in my arms.  And yeah, "tiny" is the right word.  She was only five pounds, 11 ounces.  Her first Sunday, she wore a doll dress to church, and it fit perfectly!  I was barely older than she is now when I gave birth to her.  And now she's an adult, actually has been for four years.

Deborah was born an "old soul."  Not that she didn't do childish things, not that she was able to be independent from the get-go, but there was something mature inside from the beginning.  But as I look back over her past several years, it's been interesting to watch a very fast maturing.  I think it's come from her experiences.

As a senior, a friend of hers, a teammate, was killed in an auto accident.  Deborah's soul in anguish, she reached out to the rest of the team and gathered them in.  And as time went on, and one in particular still really, REALLY struggled, she was there for that person, day or night.  Even with her own pain, she reached out with comfort.

Her freshman year of college, she learned that her new baby brother wasn't going to live.  Again, even with her own pain, she reached out.  I remember being at a dance competition and a friend of mine was so excited about our baby and was gushing about how happy she was for me (she didn't know the diagnosis).  I smiled and thanked her, and went around the corner and sank to the ground, tears pooling in my eyes.  Deborah came looking for me a few minutes later to tell me something, found me, and just put her arms around me and held me.

When school got out in April, she moved home and took over almost all my chores.  Repeatedly, she asked me what needed to be done next, who needed to be taken where, and asked me to go sit down on the couch.  When Aaron was born, she took to him immediately, soaking up that precious, perfect spirit of his, spending time with him.

When it came time to Lifeflight Aaron from our home, Deborah packed things up for me, helped with his ventilator while paramedics bagged Aaron.  She called a neighbor and got me a ride to the hospital.  And then, on her Thanksgiving break, she and Mary held down the fort with the youngers because Dad was out of town.  And while that may have been the first time she had to do that, it certainly wasn't the last.

Her funding for college ran out after two years, so she moved back home and went to work full-time, helping care for senior citizens that could no longer care for themselves.  During that time she earned enough to buy herself a small older car (for cash, not on time) and put away enough to go back to school.  Working graveyards for two years pretty much screwed up her sleeping schedule, but with it, she also made herself available in the home during the day if I needed to go out.  See, she also learned all of Aaron's cares and emergency protocols.

Deborah is nearly as good with Aaron and his needs as I am.  I don't know many other 21-year-olds who have looked Death in the eye and shown Him the door.  But one day when I was gone running errands, Aaron's ventilator had an issue.  His oxygen
was at about 40% if I remember right. She called me to run through things.  I told her to start bagging him and if she didn't like how he looked in a minute, to call 911.  I was on my way.  (Wouldn't you know that day was the ONE day that traffic had to go the speed limit, side by side?  Where's a cop when you WANT to get pulled over?)  I got here as fast as I could, racing into the house.  She had rescued him, found the problem, and he was playing happily.  And she wasn't freaked out.  She just did it.

She can change a trach, change a g-tube, and tickle him to make him laugh.  She knows where it is she wants to go in life.  She's got a plan.  Will she make mistakes still?  I hope so.  We all do.  But if I had to pick anyone to stand by my side in a crisis, she would be one of the very first.  Yeah, I think she's grown up.  She is an adult.  And I'm so grateful she's also my friend.

Age is relative. Experience is relative. And I think often intensity is confused with maturity.

Laura Marling 

Wave of Light

October 15th is set aside as Pregnancy and Infant Loss Remembrance day.  Each is invited to light a candle from 7:00 to 8:00 p.m. in their time zone, creating a wave of light, of love, of remembrance across the world.




Remember...



















"Look at how a single candle can 
both defy and define the darkness.” 
― Anne Frank

Sometimes It's Just Hard

Being a special needs mom (dad, sibling, family) is just hard.  It is.  But not so much in the way that everyone imagines.  You hit your stride.  Feedings, diaper changes with cords to avoid, even suctioning, meds schedules and machines become second nature.  Just like anything else you do for a while, it just is what it is.

But the hard part is how you're "different" from what you used to be.  And sometimes, I miss it.  There is no more just jumping in the car and throwing the kid in the grocery cart. No, for us, it takes a good ten minutes to load OR unload Aaron and his equipment in the car.  That is on top of any time going or coming or shopping.  There's the trying to maneuver a fairly large wheelchair in and out of rooms, asking people to move so that you can be accommodated.  

This past week, I went to a gathering, and I got there late.  Yeah, that time it takes to load and unload, plus the general craziness of an evening with other people's schedules.  And when I got there, it was obvious that there was no way to come in, not without moving people around.  While I KNOW that every single person in that room would have been more than happy to do that, for me, it was just too much.  I stood out in the hall, trying desperately not to cry, and trying to decide how I was going to get up the energy to load him back up and go home.  And then explain when I got home that I just couldn't do this.

Another woman quickly noticed what I needed, and refused to take "no" for an answer.  In less than 30 seconds, she had things rearranged and gently, but firmly, guided me into the room.  And I was so grateful.

'Cause see, like I said above, it's not always the medical issues that make this hard (although those curve balls can really throw you).  It's the isolation, it's the memory of the carefree, independent, always-on-the-go person you used to be.

I needed this meeting, and not so much the information (although I enjoyed it).  I needed to be with other moms, other women.  I needed the chit-chat, the fellowship, the sisterhood.  And when I couldn't (because it was a "couldn't" not a "wouldn't") take those steps on my own, someone else did it for me.  And that is what sister-friends do.

After this downer of a post, I'll leave you with some fun pictures.  Aaron has been doing well.  He's been starting to retain some fluid, so I've added in another medication for a short time to help him out there.  He's actually made it through a full week of school, and then a shortened week last week because of fall break.  He LOVES it.




Hopekids is an organization we belong to that helps families experience those "normal" type of activities, movies, etc, that we just never make it to.  His shirt says: Hopekids, Restoring Hope, Transforming Lives.  And on the back it says:  Got Hope?  Love this.







We seem to have an escape artist on our hands.  Fortunately, after a long day at school, he was too tired to complete the process.

 

Aaron's seasonal tree. (Although, it went from 4th of July to this, oh well, sorry August).  I found two beautiful butterflies for all his angel friends.  

And watching General Conference with the family.  Such a blessing this was, what great counsel.  I love the spirit I feel when listening to these great men and woman.  I've got a goal to work with so many of these wonderful quotes and ideas.  I'll keep you posted as I get it done.





Though we may feel we are “like a broken vessel,” as the Psalmist says, we must remember, that vessel is in the hands of the divine potter.  Elder Jeffrey R. Holland