Busy, Busy Times

Okay, so it's been waaaay too long since I've written, and I can feel it in my brain.  It's all kind of jumbled up right now.  Not sure I can even try to straighten it out.  But you were warned when we got home that life in May is just crazy around here.  Just this past week we've had four concerts/performances, four baseball games, soccer meetings, a scout camp out this weekend, three play practices (for three different people in the family!) and the list goes on.  I've also returned to work, because I didn't have enough to keep me busy. 

I stopped to count the trips I made on Thursday, and it was insane!  6:00 a.m. drop off to the high school for an early morning class, 6:45 drop off to the Jr high for an early morning class.  8:00 a.m. Jr high car pool and then drop off grade schoolers because there was a project due that wouldn't have survived the bus ride.  9:00 a.m. end of year testing at district headquarters for my homeschool 7th grader.  10:30, take same 7th grader over to the Jr high because he's also enrolled there and really should have been in class that day.  3:00 p.m. pick up Jr high car pool.  4:30, run over to some soccer fields for a tryout.  5:30, trip to the grade school for the 1st grade performance, dropping off one at the Jr high on the way.  Run home quickly afterwards at 6:45 because Aaron is pulling tricks on his nurse and she needs some back-up.  Back to the Jr. high for band concert, and then, drop kids at home at 8:30 and head out to a soccer team meeting.  9:15,finally, home again.  And of course, because Fate was laughing at me, I had a huge load of work from the office. Yeah, it's not always that crazy, but sometimes....

And Aaron?  He's been doing great.  He had some bumps after coming home, but nothing that couldn't be managed.  He did well enough that a week ago Wednesday, I dropped his vent settings a little bit.  We're trying to lower his PEEP very gradually.  It will make it easier for him to come off the vent if it's already not providing as much support.  He wasn't real sure about it.  In fact, on Monday evening I was almost ready to increase it again.  But by Tuesday, he was thinking it was all okay after all. 

He hasn't been real thrilled with the cold front that came through yesterday, though.  Our AC has decided to go on strike, and there's no sign of it coming to a compromise.  So we've been opening the windows to try to cool things off.  Aaron doesn't do real well with a lot of heat.  But apparently (I think) he didn't appreciate the wind that kicked up yesterday either.  This morning he started struggling again, quite a bit.  I personally have no experience with asthma, but I've known others who struggle with the dust and pollens in the air.  But this kid?  He's on a closed, FILTERED circuit, for Pete's sake!  I wouldn't think it would really make a difference.  He, on the other hand, disagrees.  Whatever.  But after a breathing treatment, he's done great the rest of the day.  I'll just have to be very careful about wind and dust and timing of having the windows open.

On another note, he's been a bit sadder recently.  And he's acted like his tummy was uncomfortable.  And I've noticed that it's often right before a feeding.  Yeah, I've heard that people with feeding tubes don't get hungry.  Again, don't tell Aaron what's "supposed to be."  I sat down and figured out his calorie intake against his weight.  I think he was hungry.  I don't know about you, but I NEVER get grumpy when I'm hungry.  (And it's a good thing my family here doesn't read my blog or I might get called out as a liar.)  Anyway, I increased his calories yesterday (because I didn't have enough to do with all my running around) and he's been much happier today!  Even with being warm.  Poor kid.  He thought he was being starved to death.  Sorry! 

Anyway, we're less than one month from Aaron's 3rd Birthday!!!  How awesome is that??  Because Dad and big kids will be busy running a Cub Scout Day Camp on his birthday (the 13th) we're going to celebrate on the 15th.  Mark your calendars and join us if you can.

If you want something done, ask a busy person to do it. 

The more things you do, the more you can do.
Lucille Ball

International Bereaved Mothers Day

 Next Sunday is Mother's Day.  The day kids everywhere will make construction paper cards to go along with raw or burnt breakfast in bed for their moms.  But have you stopped to consider the moms who don't have their children to hold anymore?

Child and infant loss almost seems to be a taboo subject in our society.  And it takes so many forms:  miscarriage, stillbirth, infant death due to SIDS, illness or accident.  Childhood trauma, cancer, depression in our young adults, workplace accidents or violence in adulthood.

We have words for loss of spouse or parent.  In the English language there is no word for the loss of a child.  It's almost as if the lack is saying there is no way to confine the emotion to a single word.

In times past, it was not unusual for a parent to lose a child.  During the WWI and WWII, we had Gold Star Mothers.  Many of our ancestors laid infants to rest in the prairie sod.  A very poignant sculpture bears witness to their grief at Winter Quarters, Nebraska. I had always found it touching, but it wasn't until one time I stepped forward and saw the image of a child lying in the shallow grave that tears filled my eyes as I traced the mother's gaze to her child's body as she tried to imprint upon her mind forever her baby's face.

But today, it's not spoken of.  It is almost as if we're afraid to acknowledge it.  Logic tells us that it can't be contagious, but logic often plays no part in emotion.  Or maybe, we rationalize, they don't want to be reminded of the loss.  Or we don't know what to say, so we say nothing, or avoid them all together.  And really, hasn't enough time gone by that they should be getting over it?

But how do you "get over" the loss of a child?  Whether a loss at 20 weeks of pregnancy, or 46 years of age, it's still your child, your flesh, your heart of hearts that has gone away.  While a broken bone may heal, a broken heart does not.  And what's a mama bear supposed to do, who is she supposed to protect, when the cub has gone?

Today is International Bereaved Mothers Day.  A day to reflect and remember the moms who won't be getting breakfast in bed, or phone calls, or roses from their children, the moms who instead of putting away toys and clothes, will be weeding grave sites and placing flowers and toys there.   Take a moment and tell your friend, tell her that you remember her child.  Tell her you are sorry.  Say her baby's name. You won't be reminding her that her baby has died.  She knows that.  She lives with it every day.  You'll be telling her that you remember that he lived.

"When someone you love becomes a memory, 

the memory becomes a treasure."

Author unknown

Home!!!

We're HOME!

He's still a bit squirrely,  and I'm still giving breathing treatments, but we're home! 

And the race to the end of the year continues.  I don't know how often I'll get to post over the next three weeks.  We're currently involved in four soccer teams, two baseball teams, a choir, band, ballroom team, and also have three soccer referees in the house.  Yeah, it's a bit crazy.  But I wouldn't have it any other way.  I am so blessed.

Having a place to go - is a home.  Having someone to love - is a family.  Having both - is a blessing.  ~Donna Hedges 

There Can Be Miracles, When You Believe

Just over three years ago, we were told that our unborn baby would not, could not live.  I cannot describe the anguish we felt.  Words cannot express the emotion, it has to be felt.  Our hope was so frail, so fragile, but it was there, and we clung to it with all our strength.

Now, if faith and prayer were all it took for little ones like Aaron to live, the statistics would be reversed.  We would have a 90-95% survival rate, instead of a 5-10%.  It takes so much more as well.  However, along with the medical expertise, faith and prayer have been critical.

But sometimes, sometimes my faith waivers.  Remember, we've "known" for over three years now that he wasn't supposed to be able to live, and if he did, his life would likely be short.  And we don't know what "short" means.  Last night, I was struggling.  We really haven't made much progress on his oxygen needs since being admitted 12 days ago.  I mean, we've touched four liters of oxygen a couple of times, but not for more than a few hours.  And we've had rides the other way too, most notably 12 liters, and that lasted much longer than any of our four liter experiences.  And again yesterday, he touched four and a half a couple of times, but spent more time on six than five liters.  It's experiences like this, where we just can't seem to help him get back to a safe, stable baseline, that cause this mama's thoughts to go places no mother's thoughts should ever have to go.

So last night was difficult emotionally for me.  I reached out to my other special needs moms.  I knew they would really "get it," because they've had those thoughts, those experiences, and unfortunately, too many of them have also seen those fears become their reality.  I knew they would be there, and they were with many prayers, good wishes, and encouragement to keep my hopes up.  And because of this similar path we've walked, they know exactly what it takes to keep that faith and hope.

In addition, my thoughts returned to a book I read many, many years ago, One Tattered Angel.  Little Charity Yorgason was born with a brain stem but no other brain material.  She also wasn't supposed to be able to live long.  But she did live for eight years, and blessed her family and those around her immensely.  As he tells her story, her father relates that she was spiritually gifted, and he often found that when he needed to communicate with her, when he needed her to understand something, he would do so by praying.

Last night, I took this approach.  As I prayed, I plead with my Heavenly Father that He would open and relax Aaron's blood vessels in his lungs, that Aaron would understand the need to do this, and that he would be able to cooperate.  I expressed my gratitude for Aaron, for all that we get to experience with him, and that while I knew it wasn't my decision to make, if it was okay, I really wanted to keep him around, that I just wasn't done having him here with us.  I don't know that I ever will be ready to let him go, but I really felt that we needed him to regain his strength and be able to come home and be safe and happy at home.

I went to bed still troubled.  Aaron stayed up and played, and it was good through the night to hear him happy and playing, but I was still struggling.  About 5:00 this morning, the nurse was in and I asked where he was.  Still on six liters.  Not very encouraged, I tried to go back to sleep.

About 7:30, I woke again and it was lighter in the room.  I peered over at the oxygen flow meter, and it was down, a lot!  It was still a bit dark, and Aaron was sound asleep so I didn't want to turn a light on.  I tried to count the hash marks at the bottom to see how much he was actually on.  It looked like three liters.  Three liters!  Our goal for starting our 24 hour watch period.  I went out and asked if that's truly what he was on, and was told no, she thought it was TWO liters.  The nurse brought the flashlight in and yes, two liters, not three.

Since then, he's had a little bump up to four for a little while, but those are okay.  That's why we need to be at three or less so we have wiggle room for the bumps.  He got woke up by his breathing therapy and had a hard time settling back down, so he's now on three liters.  Yes, even after not wanting to settle down and needing more oxygen, he's still down where he needs to be for our countdown.  And frankly, we haven't seen this since before he got sick, even when we were still at home.

So our countdown clock is ticking.  If all goes well today, we'll head home tomorrow morning.  If not, well, if we hit another speed bump, I'll keep in mind that it's a speed bump, not a brick wall.  And we'll keep trying.

Several years ago, my sister made a CD with songs and lullabies for her nieces and nephews (she didn't have children yet).  We call it, "Love, Aunt Maurie."  One song, the one my mind went to and clung to when we got Aaron's diagnosis was "When you Believe" from The Prince of Egypt.  Last night and this morning, I found it playing over and over in my head.  It's on a link at the bottom of the screen.  She does a beautiful job.  I hope you enjoy it.

Many Nights We've Prayed, With No Proof Anyone Could Hear
In Our Hearts A Hopeful Song We Barely Understood
Now We Are Not Afraid, Although We Know There's Much To Fear
We Were Moving Mountains Long Before We Knew We Could

There Can Be Miracles When You Believe
Though Hope Is Frail, It's Hard To Kill
Who Knows What Miracles You Can Acheive
When You Believe Somehow You Will
You Will When You Believe

In This Time Of Fear When Prayers So Often Proved In Vain
Hope Seemed Like The Summer Birds Too Swiftly Flown Away
Yet Now I'm Standing Here With Heart So Full I Can't Explain
Seeking Faith And Speaking Words I Never Thought I'd Say

There Can Be Miracles When You Believe
Though Hope Is Frail, It's Hard To Kill
Who Knows What Miracles You Can Achieve
When You Believe, Somehow You Will
You Will When You Believe

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

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

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