Medical Mama

"Gee, I wish I could stay home and just play with my kid."  

All tuckered out from staying up
 way too late playing.

Yeah, not said to me, said to another medical mama friend of mine.  And this on a day where her kid tried to die on her. Perhaps not the best timing, and frankly, untrue in sooooo many ways.  

So what does it mean to be a medical mama?  It means that you've learned the true meaning of "fly by the seat of your pants."  'Cause nothing, nothing is ever set in stone.  It means that while the rest of the world celebrates Christmas on December 25th, yours might be put of until January 1st.  It means "celebrating" your 25th anniversary with a helicopter ride  for two, but not with your husband, with your child instead.  It means that when your parents buy plane tickets for you and your siblings, yours is the only one that they buy trip insurance on.  

For a sibling, it means that there's always the chance that Mom won't be in the audience, on the side of the field, and maybe even at the airport when you come home from your mission.  (Yeah, found out later that was a very real fear of Mary's, and why she lingered so long at the top of the escalator.  She didn't know for sure that I would be there.)  Not that we don't want to be there, not that we won't do everything possible, but if there's been a crisis, an emergency happening right then, we can't be.

It means being ever vigilant, knowing what your kids' norms are.  And I'm not talking about sleep schedules (still don't know what those are).  I'm talking about heart rates, breathing rates, how much oxygen he needs.  It means that I'm on alert (yeah, again) because while he's looking good otherwise, his heart rate has been about 20 beats per minute higher than usual for the past 24 hours.

It also means that you're super prepared for just about anything.  There's Plan A, Plan B,  and Plan C, not just for him, but for the other kids, too.  And while there may not be a Plan D, you're put enough things together fast enough that you've got the groundwork for D through Z.  

It means that you're thinking of any way, and every way, something as simple as getting dressed can be used for therapy, to teach skills that come so naturally to everyone else, but your child has no concept of.

I was thinking the other day (I know, dangerous).  I can pack for a two week stay anywhere in less time than it takes for the ambulance to get here.  They're only about a mile and a half away.  It doesn't take long.  Mostly it's because it's been packed for the past almost five years, with a list of the few things that I use on a daily basis to throw in there (toothbrush anyone?).

My brother found these growing in his yard.  It made my
day that he though of us, of Aaron, and sent me a picture.
Little purple pansies, tiny but strong, bringing color and
light, just like Aaron.

It also means that you understand so much more.  It means that when a friend says she "can't" do something, you don't look for the reasons behind why she's trying to get out of it.  You know that sometimes the simple things are the most difficult, and that everyone needs to be cut some slack, and given some love. 

You know you can (and will) reach that breaking point, the cliff on the edge of the abyss, teeter, but still pull back, pick yourself up, shoulder your load, and keep going.  And even find the joy.  'Cause there is joy, a lot of it.

You grow, you learn, maybe even more about yourself that you do your child.  You learn that deep within yourself is a strength that you always hoped was there, but secretly were afraid was lacking.  You learn to listen, really listen, when someone's hurting, and to not say anything but just be there, 'cause you know that sometimes there are simply no words for the pain, or the joy.  

So next time you're thinking a medical mama has it "so great," make sure you're thinking for the right reasons.  We do have it great, but not because we get to just "play all day" with our kids, or have the awesome, front row handicap parking spot right by the door.  

We have it great because we understand the fragility of life, of the here and now.  We understand the joy that comes when a milestone is reached and recognized.  We get to be with these wonderful teachers of our souls who fight through more than anyone else, and do it with smiles on their faces.  And who teach us love.

“I think a hero is an ordinary individual who finds strength to 

persevere and endure in spite of overwhelming obstacles.”  

~ Christopher Reeve

Five Years Ago Today...

Five years ago today, it was snowing.  It was a Thursday.  And it was one of the most painful days of my life (so far).

We went for our 20 week ultrasound.  Michael went with me, and William had some things he had to finish up so he met us there.  I remember wondering if I would have to just tell him what they said.  I mean, the big news was, boy or girl, right?

But that's not what happened.  It did seem to take a little longer than I expected, but after a little while, she asked if we wanted to know what it was.  Of course!  That's the real reason I was there.  A little boy, another precious little boy.  Then she pointed out that he had a cleft.  Okay, so maybe it was better that it was a little boy.  I mean, even today, scars are more acceptable on boys than girls, and if he didn't like it, he could grow a mustache, right?

I remember thinking that while I didn't know a whole lot about clefts, that sometimes it was a series of surgeries over several years, it was okay.  We'd deal with it.  And then she left to go get the doctor.  He came in, all somber, and said that our little boy had some challenges.  So it's a cleft, not the end of the world.

Except it was much more than a cleft.  It was his heart, his clenched hands, his crossed legs, some things on his brain called choriod plexus cysts, and so on.  He showed us each of them on the ultrasound, and tears filled my eyes.  I silently sobbed as he went over each part.  Michael noticed and wanted them to stop hurting Mommy.  Daddy told him that they weren't hurting me, but at that moment, I felt like I would never not hurt again.  They said it might be a chromosomal issue, but I had no idea what that meant.

An appointment was set for us for the next Tuesday (Tuesday!!  how was I supposed to make it that long??) with a maternal fetal specialist.

We went home, and I sent an email out to family, telling them what we knew, also asking them not to email or call because I somehow had to stop crying before the kids came home from school.  We wanted to tell them all together, and Deborah was away at college.  We had to wait for the weekend, and I had to try to pretend things were okay.  All I wanted to do was crawl into bed and pull the covers over my head.

I started doing research.  I put each anomaly (I hate the word defect) into the computer.  Okay, that's not too bad.  Okay, that can be fixed, explained, made to go away.  And so on.  Then I put them all into the search engine together.  Trisomy 18.  It was right there, and I knew what they'd been thinking.  And I knew they were right.

One of my darkest nights.  Not my only one, but the first of what would be many, as I wondered how I could have failed my little one, failed to give him a strong body.  I hurt with every fiber of my being as I tried to contemplate burying my baby.  But as the morning came, I vowed that if he was able to fight, if we could make it to his birth, I would give my all, I would learn all I could, just to give him a chance to live.

And so our journey began...

Through the blackest night, morning gently tiptoes, feeling its way to dawn. ~Robert Brault

It's Okay To Be A Lower Light

Sometimes (often?) we feel like we have to know it all, do it all, be it all.  Especially when you parent a medically fragile child, the feeling creeps in.  Do I really know enough?  Can I do it?  I have to, 'cause if I can't, the unthinkable can, and probably will, happen.

Somehow, I think we bargain with God that if we can just be all and do all, we can run faster than the diagnosis, than the challenge, keep ahead of it.  It's not true, and deep down, we know it.  But that doesn't stop us from trying, and it's also exhausting.

Anyway, so that's the background to this, where I've been, what's been going on inside this crazy, mixed-up brain of mine.

Then last night, I went on a mother-son date with Matthew to a Vocal Point concert.  They're an A Cappella group from BYU that's really popular around here.  If you remember The Sing-Off back in  2011, they had a very successful run there.  Anyway, fabulous group of guys.

I love music, I love being with Matthew.  I was all set for a really good time.  And we did!  I laughed so hard!  If you want to experience it, I highly recommend their YouTube channel.  What these guys can do with their voices is nothing short of amazing!  You'd swear there had to some instrumentals, some back-up, but no, it's all them.

But here's the kicker, where this whole thing started off.  While they did a lot of fun, popular, upbeat and even silly things, there were some very spiritual moments in there, too, usually preceded by an intimate look into a personal experience.

I can't remember what was said before "Brightly Beams Our Father's Mercy," but that one hit home, deep down.

See, I think I've been trying to be a lighthouse, but that's not my role.  I just need to keep the lower lights, the shore lights, on.  I only have to do what I can.  And as I sat there and thought about all those whose light has helped shape my own safe passage into the harbor, I'm amazed.  My fellow trisomy moms, heart moms, trach and vent moms, other special needs parents.  The staff at the hospital, our home nursing staff.

You know, when you combine a lot of smaller lights, they give off a great light.  It illuminates the path, makes it clear, enlightens the mind.  And I can do that, too.  I can add my own small light.  I can give a hug, encouragement, tell someone what I've learned and hope it helps them.

They also sang "Nearer My God to Thee."  Another reminder of Whom it is that is the Lighthouse.  And I am so grateful for His guidance every day, every hour, every minute, so grateful to know where my strength really comes from.

And after last night, I add nine other lower lights that help to guide my way.  Thanks, guys.  I don't know that you can ever know what you did for me and mine.

And see that all these things are done in wisdom and order; for it is not requisite that a man should run faster than he has strength.

 Mosiah 4:27

**  I'm afraid I couldn't find a youtube version of them performing "Brightly Beams our Father's Mercy" but here you can at least hear a beautiful version of it.

Life and Death, Suffering and Joy

Aaron is home, for which we are very grateful.  He even seems to be doing well, although I'm pulling some nasty colored stuff out of him.  I'm holding out for that just being left-over junk because his lungs have been so constricted with the asthma.  It so need to NOT BE another illness.

I experienced some challenging moments in relation to emotions at the hospital.  Two very different scenarios, in close time proximity.

The first one occurred when I was out in the hall talking with Aaron's doctor.  I kept hearing a pulse/ox alarm, the same alarm that we respond to here at home.  But Aaron was on hospital monitors, not ours, and it wasn't his alarm.  It was a few doors down.  Down there, a little girl was being prepped to go back to her long-term care facility.  But it's only going to be a very short stay.  Her parents are quickly, oh so quickly, learning to take care of her because the goal is to get her home before she goes Home.  Because the hospital is so full right now, the other facility can teach her parents faster.  And time is not on their side.

Yeah, she's not going to live much longer.  Her tattered little body is tired, and done.  They're racing against a short time clock.  I looked in her eyes as they wheeled her down the hallway, and it may just be my imagination.  But her eyes looked tired, resigned, and oh so world weary.  My heart aches for her, for her family, for all they endure.  And she has endured much.  I don't know how old she is, but my guess is between two and four.  And her time is now measured in days.

Just an hour or so later, I headed to the Ronald McDonald Room to see if I could find something for dinner.  Coming towards me was a crowd.  In the lead was a little girl in a wheelchair, and surrounding her were people carrying balloons, some boxes, what looked like games.  As they got closer, I realized I recognized Mom.

The last time I saw her, she was sitting bedside in the PICU, and her daughter was lying motionless, tied to more machines than Aaron has ever been, laid low with Influenza A.  I have wondered so many, many times over the past month how she was doing, if she even survived.

And here she was, on her 5th Birthday, and tied to NOTHING.  She's been moved to the Neuro Trauma Unit.  She still has a long ways to go, but it was so wonderful to see them!

I've pondered this over the past few days, also in conjunction with my own challenges.  And the only way I can see through this world is to look to my Savior.  I know He lives, He loves us.  He wants us to come to Him.  He holds our hand, even when we are in too much pain to realize it, but when we do notice, we know He is always there.

Life and Death.  Suffering and Joy.  Pain and Relief.  And He is by our side.  Always.

For I the Lord thy God will hold thy right hand, saying unto thee, 

Fear not; I will help thee.

Isaiah 41:13

Asthma, I Hate It

Asthma. I hate it.

Heart rate creeps up

Breathing increases

Sats go down

Pulling with arms and legs, 

Using accessory muscles to try to get air into too tight airways

Sweating

Squirming

Gasping

Until....

Albuterol finally kicks in and he collapses,

Exhausted from the effort to breathe,

Sleeping, until the next time.

Me, not so much.

Hovering,

Watching,

Praying,

  Hoping...

Waiting in the ER yesterday, totally
wiped out from working so hard to breathe.

Yeah, that pretty much sums up our week.  It's been a rougher one.  He was actually breathing okay Monday and Tuesday, but cried a lot those nights, too.  Talk about heartbreaking.  Big sad sobs, quivering lips, pained expression.  You know, there's a difference between a mad face and a heartbroken face.  His was heartbroken.

Wednesday at school, he had a pretty bad asthma attack.  It took giving inhaled albuterol twice in 30 minutes to get him out of it.  Talked to the experts, put measures on board, and stayed home.  There really can be some great things about his machines and monitors.  Because we've got them, I've got more leeway to stay home where with another child, we'd have been in the emergency room because it's simply not safe to do so much albuterol without seeing how it's affecting the heart.

Anyway, we did okay.  In fact, Wednesday night, not only was he looking good, but he was happy, too!  Then Thursday, he did it again, in spite of the fact that we were giving albuterol very aggressively.  He got three large breathing treatments in the course of an hour, which meant it was time to throw in the towel.  

Good news is that with those treatments, and one more just before leaving for good measure, I drove him up here instead of taking our golden chariot (ambulance, you know, a ton of gold needed to ride in one of those things!).  But seriously, for those who don't know, albuterol is usually dosed at 2 puffs every 4-6 hours.  Aaron's usual emergency dose is 6 puffs.  We were doing 8.  So on Thursday, he got 32 puffs in the course of 2 hours.  Yep, not maintainable at home.

So we're here, and he's doing much better.  We've changed up some meds (again!) and also looked at ventilator settings.  You know, it IS called the "practice of medicine," and we're practicing on him.  

See, his asthma has gotten worse with the settings we changed him to about a year ago.  BUT the old settings were worse for his heart issues.  So now the plan is to keep him on his newer settings as long as he's doing well.  If he starts to struggle with his asthma, we switch back to his old settings (reset for new body weight).  Thank goodness for his awesome ventilator which will let us switch with the touch of three buttons.  The old one we would have had to go into settings and reset all the different functions.  

We're hoping to go home this afternoon.  There is (as always) lots of bugs and germs up here, and all his tests came back totally negative.  We'd like to leave while they're still that way.  

Breathe. Let go. 

And remind yourself that this very moment 

is the only one you know you have for sure. 

~Oprah Winfrey

Toofers!!!

My little guy is growing up.  You know those little things that you sorta know are going to happen with your child?  You don't really think much about them, but it's exciting when they happen.  First lost tooth fits right in there.  But if your child doesn't live long enough to even get his teeth, he won't lose them either.

Aaron lost his first one last September, but I'm not sure I really counted that one.  I mean, the dentist pulled it in the OR.  Does that count?  Maybe.

But he's had a couple loose ones, you know, those cute tiny ones in the front on the bottom. The doc checked them when he was in a week and a half ago, and said, "Yeah, they're loose, but he's got a little while, you'll know when."  (I'm thinking, right, I only knew with my other kids when they brought me the tooth OUTSIDE of their gums.)

And hey, consistency is great, right?  I went in yesterday morning and one was missing!  I was kinda confused as to how it happened without him having an issue.  I mean, from all evidence, he does protect his airway, but a few months ago I tried to give him some cookie crumbs and it was kinda ugly.  He just didn't know what to do with them.  He gagged and choked, and had a pretty rough time.  And those crumbs were a LOT smaller than his tiny tooth.  But nonetheless, the tooth was gone.

So I figured I'd better try to pull the other one one.  After all, it had been looser than the missing one.  Nope, it was stuck in there pretty good still, so I left it alone and figured I'd try again today.  Well, like his sibs, he apparently wanted to take care of it on his own.  Sometime during the night, he was chewing on one of his blankies, and his nurse noticed that there was a lot of blood.  Yep, he took care of it, again!

Then this morning, when changing his clothes, I found two tiny pearly whites, sitting underneath him in his bed.  So mystery solved.  Somehow, he got them out, and out of his mouth without swallowing them.  Now, if I could only convince the tooth fairy to show up.  (He's kinda been MIA for the past several years, lazy mama.)

Anyway, on other fronts, Aaron is doing REALLY well.  (I do say that with a tiny bit of trepidation.)  He's almost completely off his oral steroids, just a teeny, tiny amount today and tomorrow.  He's also now on his inhaled steroids and is using his frankincense oil lotion.  And he's on ONE TO TWO LITTERS of oxygen.  He has been for several days now.  I honestly can't remember when he's needed so little.  Plus, his heart rate and respiratory rate are lower than we've seen before.  All really good signs.

A couple weeks ago, I had dreams about him dying, then not dying, then in a lot of trouble in some strange hospital and I couldn't find him.  (My husband pointed out that this was my version of the "end of semester I forgot to go to class, it's finals time" dream.  He's right, and it helped to have that pointed out.)  But then it was followed by that awful week.

Last night, I had a different dream.  I was carrying Aaron around and I had been for quite a while.  I realized that I probably ought to be heading home, but was a little confused about why I needed to.  Then I realized/remembered, that he wasn't on a vent, and hadn't been on his oxygen for "a while," and while he was looking really good (in my dream), it was probably time to be near his oxygen again.   No, I don't think these dreams were harbingers of things to come, but oh, I sure enjoyed last night's more than the one two weeks ago.

Hope springs eternal.  I'm hopeful that we've got some really good days ahead, time where we can make progress of reducing some of his supports, increasing his heart and lung health.   A pretty different outlook from just a few weeks ago.

God sends the dawn

that we might see

the might-have-beens

that still might be. 

~Robert Brault

What a Week

After his visit on Wednesday.  Like the
mask?  We were doing everything
possible to avoid bringing home
any new bugs. And the cute bib
is courtesy of Gramma Brown.
Love my li'l bandit.

Oh, boy, it has been a rough week.  But I guess I'm glad the "rough" was the first half and the second half has slowed down a bit.  This may be a bit disjointed and it's kinda long, but hey, you're invited to my "therapy session" and you've been warned, right?

Sunday night we had various parent/child meetings for scouts and church with a few of the boys.  Deborah kindly offered to stay with Aaron.  Except Aaron was feeling left out, I guess.  He had a massive asthma attack that had her giving albuterol, and then bagging him because his heart rate was too high for a second albuterol dose but he was still struggling. I raced home, we bagged some more, got his heart rate back down, gave more albuterol, and he figured he'd gotten what he needed so he went to sleep.  We had no nurse that night, either.  But that also meant I was right there, keeping a close eye on him myself.

Monday morning, I was in Aaron's room as Joseph (14) was headed out the door for school.  As he waited for his ride I thought, "you don't look too good, maybe you should stay home."  Except it was the last day of term and he had assignments that had to be turned in.  Yeah, I could have taken it over, but I figured he'd be okay.  Um, not really.

About noon he called and said his throat was killing him and his head was exploding.  "Turned everything in?"  "I will have in the next five minutes."  "Okay, I'll come."  When I got there, he was a mess.  You could tell just looking at him.  I called his ped from the school to see if we could get in for a strep test, and hoped he hadn't given it to Aaron.  (See, I'm really good at denial.)

Uh, not strep, Influenza A.  Yeah, the nasty one that the flu vaccine missed.  And while we were waiting at the hospital for the test, Aaron did it again.  Yep, more asthma.  Racing home, again, to take care of things as they threatened to spiral out of control.  At that point, I also gave an emergency dose of steroids and started him on a 3-5 day steroid regimen.

Joseph was quarantined to his room, yeah, the good old fashioned quarantine where he doesn't come out for anything except bathroom breaks (in a bathroom no one else could use) and the only person who ever goes in just delivers food and picks up trays, and scrubs really good afterwards.  Hey, it's worked before and seems to have worked again.

Tuesday was pretty quiet, thank heavens.  We needed a small break.  But a small one was all I got.

Wednesday, William had some minor surgery.  And yes, it was minor, but it was still surgery.  And Aaron had an appointment at Primary's with four different specialties that had been scheduled since August and simply couldn't be put off.  Cancelling it would have had him seen next in June, plus, remember, his asthma is out of control.  Not breathing for six months?  Not good.  We had to keep it.  So I took William to our local hospital and stayed briefly and had to leave.  A kind neighbor picked him up afterwards and brought him home.

Meanwhile, I got Aaron from school and headed north.  Unfortunately, in the craziness of all the preps being done for the day (food, etc, for Joseph in his room, William's surgery and Aaron's appointment) we missed a filter on Aaron's vent system that helps keep his air warm and humidified while he's away from home.  As we got to the hospital, his breathing changed, became labored, he started to look worried.  That's when I realized what was missing.  I couldn't find a spare quickly and knowing the respiratory therapist would have one upstairs, we made our way to the check-in desk and told the nurse that we needed to get a "nose" or a filter from the RT that was there.

By then, Aaron had held on as long as he could and started dropping, fast.  I turned up his oxygen and suctioned, got almost nothing, but he dropped even faster.  As he hit the low 70's, I was grabbing his ambu bag (again!  3rd time this week!!) and taking him off the vent.  I turned around and told the secretary,  "I need the RT here, RIGHT NOW."  I didn't even realize that right behind her was the nurse who did an about face and left immediately.  As he dipped below 70% (these are his oxygen saturation numbers) I briefly wondered if I was going to have to have them call a Code.

At that moment, I managed to pull a really big, thick plug out and our trach whisperer came around the corner followed by that nurse.  We pulled more out of him, used saline to break up more of the junk down there, and got him back.  And then I started breathing again myself.

Just then, my phone rings and it's William's surgeon.  He asked how I was.  Probably not the best question.  But at least he was calling to say that everything went well, surgery was done, and William was recovering.  Aaron was also recovering, and I was trying to recover as well at that point.

Aaron's visit went well.  We're taking one medication off since it's for allergy relief, and his recent testing shows no allergies whatsoever, even to cow dander.  (Yeah, who'd a thunk it?)  And since he's been on oral steroids nearly every single month for the past five months, we're going to try an inhaled steroid instead.  It's still a lot of steroids, but at least it will target his lungs directly and not have to go through his whole body.

Oh, and all of the above was preceded by nightmares on Saturday night.  Not going into them, but they involved Aaron and hospitals and really bad outcomes.

Needless to say, by Wednesday night, I was a mess.  The PTSD was alive and in full force.  I really had no idea how I was going to be able to sleep or function, so I started looking up ways to deal with it on the internet.  That wasn't real helpful as most of it involved things to remind yourself that you were in a safe place, the danger was gone, and so forth, and seeking professional treatment.  Well, the danger was NOT gone, and I needed help now, not in a few days or weeks.

I also started praying about how I was supposed to put this behind me and move forward.  I was reminded that our leaders have often taught that gratitude is a balm of healing for many things.  I started by sending an email to our trach whisperer.  I know she can't do everything, and she can't always fix things, but just at that moment, it helped to see her.  I started listing, out loud, the good things that are happening, including the gourmet hot chocolate packet I found hiding in my cupboard.  I'm grateful for hospital staff who knows me well enough that they trust me when I say I need help, and don't think I'm just crying "wolf."  A friend and one of our nurses both offered to loan me a diffuser and some OnGuard to purify the air.  I don't know how it works, but my house sure smells good.  Joseph was improving and no one else had gotten sick.

And guess what, being thankful worked.  It helped, a lot.  It refocused my perspective.  I slept really well that night with nothing but silly fluffy-type dreams.  Sleep, a wonderful thing!

And Joseph, William and Aaron?  They're all doing well.  Joseph is chomping at the bit to get back to normal activities.  William is recovering well.  And Aaron is only using 1-2 liters of oxygen and his lungs sound great.

Life is good.  We go on.  And I'm so grateful.

"Thinking of things we are grateful for is a healing balm."

Joseph B. Wirthlin