Prayers please, and a song

When I was still expecting Aaron, a friend told me about this

version of "I am a Child of God."  It's sung from the perspective

of a child who has returned home ahead of their parents.  Over the

last year and a half, several dear friends have had to let go of

their babies.  I finally got Joseph, then 10 years old, and Mary, 19,

to record this.  I wanted a child's voice, and Mary provided the

encouragement Joseph needed to sing this.  Recently, more babies

have gone home.  I hope that in some way, this can help a little

in the healing process, or provide some comfort.  I am so grateful

to know that not only are my children His children, but so am I.

This week promises to be a whirlwind ride.  I looked at the calendar yesterday and realized that Aaron hadn't been out of the house since we came home from the PICU three weeks ago.  This week, yeah, we're going to make up for it. 

Today, Michael & I took Aaron up to get new hearing aid molds made.  The kid has grown since the end of July.  Who'd have thought?  As I put him in his carseat, I realized how much he's grown.  The little baby that we had to use all sorts of blankets and things to make the carseat small enough, is busting out of it.  Again this morning, I had to loosen the straps in order just to get him in!

Tomorrow, he goes for his 18-month check-up and his first Synagis shot.  This little wonder drug does much to prevent RSV in preemies and medically fragile children.  I don't even want to think about what would happen if he caught it.  Twice I've had otherwise healthy infants catch it, and I don't ever want to relive that experience.  I will never forget the night with the first, or the day with the second.  Aaron will get one shot every four weeks for the next five months. 

This is where we're asking for prayers.  Only one time last year, when he was already being treated with antibiotics for an infection, did he not end up being rushed to the hospital somewhere between 24 and 48 hours after his shot.  Each time, the bacteria trying to colonize his trach would end up unbalanced and he'd get a trach infection.  Now, I'll take a 48-72 hour hospital stay over RSV any day of the week.  But we're really, REALLY hoping that it won't repeat.  The thought is that since his trach is now established, and he's bigger and stronger, that it won't be an issue.  But if you can spare some time to pray for little Aaron, maybe a little more than usual, we would really appreciate it.

But the week doesn't end tomorrow. Before his appointment, Aaron will have a developmental therapy appointment here.  Then he gets Wednesday off, (I think), and we're on the run again on Thursday.  Because he blew out his right eardrum on Saturday, the ENT wants to see him early Thursday morning, and then right after that, he has his second MRI.  He'll have to go under general anesthesia for it because of his need for the ventilator. 

The MRI is in preparation for a consultation with neurosurgery next Tuesday morning.  We're really hoping that the bleeding in the brain, his subdural hematoma, has subsided and there are no new findings. 

Oh, and he's also looking like he's catching another cold.  'Cause he just doesn't have enough going on right now.

So, those are our prayer requests this week:  that he'll stay healthy and be able to avoid a hospital stay, and that the MRI will have better results than the last one.  And if I can come out of this week with a tiny bit of sanity intact, that would be an added bonus.

THANK YOU!!!

Who'd have thunk it?

Who'd have thunk a little ear could cause so much grief?  Well, I guess anyone with an ear infection might.

There were a few days last week where Aaron had some something, in hindsight it was probably wax mixed with blood, in his right ear.  But there was only a little, and while it looked suspiciously like dried blood, I reasoned that there was no way an ear infection could survive the antibiotics he had going at the time.

Then the last couple of days have had some interesting times.  At least interesting from a detached medical standpoint.  Not so interesting from a mom's point of view.  He's had a few, but only a few, big desats.  Big, meaning 70s and sometimes high 60s.  We'd turn up oxygen, try to suction and not get much.  Do a breathing treatment, sometimes his lungs sounded tight.  And slowly, he'd come back up. 

Yesterday, we did two breathing treatments, only eight hours apart.  Again, I went to bed worrying, wondering, hoping and praying.  And thankfully, I slept through the night.  And even into the morning until I was woke by knocking.  But it was Michael wanting breakfast, not the nurse.

I thought I'd give Aaron a bath this morning.  You know, in the sink, with water, all that stuff.  It's been a LOOOOONG time since he's done that.  Between having plaster casts and being sick and what-all, he's only had sponge baths for the last several months.  As I got him ready, I caught sight of his right ear.  Yuck!  Full of blood, dried blood.  Somehow, it seems an infection did decide to survive the antibiotics. 

But, with the apparent rupture, there's been a release of pressure, pressure we didn't even know was there.  He's now resting peacefully and starting, yes, another antibiotic. Thankfully, this one is a topical one we put in his ear.  So it shouldn't have those wonderful side effects he put up with before. 

And Monday, when we see audiology, we'll be asking about this, too...

Happy Thanksgiving!

I don't even know where to start here.  I know I will miss out on some things, I'm sure some very important things. 


We started this month in the pediatric ICU at Primary's.  Aaron had caught rhinovirus, yeah, the good old common cold.  It turned into a fight for his life.  We thought things were under control and preparations were being made to go home.  Then it turned bacterial and really nasty, really fast.  The only time we were in there longer was when he had his g-tube and then his trach surgeries, and we had to find vent settings that would work (or we thought would work).  That stay was only two days longer than this one. Even when he was in heart failure, it was shorter.  Now, he's back home and doing really, really well. 

I'm thankful I have two days off of work this week.  I've really enjoyed having the extra time to spend with my kids. 


Matthew plugging in the lights.

I'm thankful to have all my kids under my roof at one time.  That doesn't happen very often anymore.

I'm thankful for all the help I had with Thanksgiving dinner.  Other than lots of supervising, I really didn't make anything. 

I'm thankful we had plenty of food.  So many in this world don't.  I'm also thankful I ate a little of everything and wasn't stuffed at the end.  Just comfortably full.
 
I'm thankful my husband woke me this morning to tell me he had made pancakes and bacon for breakfast, lots of bacon.

I'm thankful for all my kid's help in decorating for Christmas, especially Mary's.  Everyone helped, but she was at it the WHOLE time. 

I'm grateful my in-laws joined us for Thanksgiving, and they brought the turkey.  I don't miss having to take the meat off the bones.

I'm grateful for my parents and siblings.  They're always there for me.

I'm grateful we have NO plans to contact EMS this weekend.  I think my neighbors probably are, too.  Last year they were up in plenty of time for Black Friday shopping due to the chopper landing for Aaron.

I'm grateful my nurses have been staying until 8 am the last couple days.  I really enjoy not waking to an alarm at 5:50.  If I'd go to bed at night, it wouldn't be so bad.  But somehow, with all the older kids, that doesn't always happen.   

I'm grateful for the doctors and nurses who have worked so hard to help Aaron, and to teach me how to take care of him.  He was a stinker earlier today, dropping into the low 70's and, for a minute, high 60's, even on 10 liters of oxygen. I knew I could suction him and give him a breathing treatment, and I knew how to check for air movement in his lungs.  I didn't really like what he did, but I wasn't running for the phone, either. 

I'm thankful my older boys are responsible and knowledgable enough that they can go on a 3-day backpacking trip without us around.  They really do well together.

I'm thankful Jonathan is enjoying wrestling.

I'm thankful David's college application is done, really thankful.

I'm thankful Matthew gets to play Snick (a dwarf) in Timberline's "Snow White and the 7 Dwarves."

I'm thankful Joseph is doing much better at getting his homework done.

I'm thankful Andrew loves to hold his little brother.

I'm thankful Michael is enjoying kindergarten.  He loves to learn.

I'm thankful Deborah is enjoying her job.  I'm also thankful she is so willing to learn how to take care of Aaron to give me a break.

I'm thankful Mary is doing so well at college.  She's a great self-starter.

I'm thankful for my home, my neighbors and my country.  I'm grateful the weather is more temperate than last year.  I think we were in the 50's today.  Last year, when Aaron was lifeflighted, it was -3 degrees Farenheit.  I'm not a cold weather girl.

I'm thankful Aaron is doing so very well.

I'm thankful for my trisomy and medically fragile family. They have been a rock of support and strength for me over the past year and a half. We laugh and cry and rejoice and mourn together.

I'm grateful for family traditions, even the inadvertant ones.  Every year (it seems) there's at least one ornament missed on the tree that isn't found until the next year.  Usually a small crystal one that blends in.  We only have a few, but somehow it happens.  I was sure last year we hadn't missed any.  Nope, there it was.  Hiding in the branches, as beautiful as always.  I think there's a lesson there.  We all have something beautiful hidden away within us.  Sometimes it's really hard to find, in fact, we might not even think it's there.  But it is, just waiting, until the next time.

I am grateful for my testimony of the gospel, for my love of my Savior and His love for me.  I am grateful for the Plan of Salvation and eternal families. 

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A Month of Thankful Thoughts:
Wednesday, November 24th:  I'm grateful to be able to take family pictures, even though some members think it should be classified as cruel and unusual punishment.  I need to capture these moments...

Tuesday, November 23rd:  I'm grateful I will have everyone home tomorrow.  Mary came home today from school, but between afterschool practices, a wrestling meet, and a graveyard shift, they won't all actually be under my roof at one time until 6:30 am on Wednesday.

Monday, November 21: I'm thankful for my warm, dry house when it's so dismal and wet outside.

Sunday, November 20: I'm thankful for Sunday afternoon naps, and a wonderful 15 year old who watched over Aaron so I could ignore the alarms for a couple hours. Take that, migraine!

Saturday, November 19: Today I'm thankful I was able to get a lot done here, and I didn't have to go anywhere. Yea for staying home!

Friday, November 18: I'm grateful for my three oldest sons. The last almost two years have been difficult for them. We've tried to keep things as normal as possible, and keep them in the activities that they love. We've been pretty successful, but I have to say that's because these three have really stepped up to the plate. They have been great to keep reminding me of what is going on and have been quite resourceful in making things happen. I love how responsible and caring they are. Love you, David, Jonathan, and Matthew!

Thursday, November 17: I'm grateful for my 6th grader's teacher, Mrs. V. She told the kids they got 200 extra credit points in math if they adjusted a recipe (doubled, halved, etc) and made it for their family. So tomorrow, we get to wake up to crock-pot french toast, made by Joseph. YUMMY!

Wednesday, November 16: I'm grateful Aaron is on 1 1/2 l of O2. First time he's been below 2 liters in almost 4 weeks! Go Aaron!

Tuesday, November 15: I'm grateful for a job that lets me work my own hours from wherever I am. There aren't many things I can do because we can need to leave at any time and spend unknown days at the hospital. But my job is anywhere I can get an internet access and I have a 29 hour turn-around on what is usually a 3-6 hour assignment. Any my supervisor has been great to tell me to just let them know if I need additional time off in regards to Aaron.

Monday, November 14: I'm grateful for albuterol, and that it acts fast. It's so great to be able to see Aaron go from struggling to really comfortable and happy within just minutes. I'm grateful for those who have developed these medications and for those who have taught me how to take care of my baby.

Sunday, November 13th:  I'm grateful Aaron is 17 months today!!!  I'm also grateful to sing with Joyful Christmas Sounds again.  I love to sing.  It feels so good.

Saturday, November 12th: Okay, this sounds silly, but then, I'm not a cold-weather girl. I'm thankful for seat warmers in the car. Actually makes dropping off and picking up kids bearable. Also thankful for Hopekids. It's so nice to just be able to go out and have some "normal" fun at a movie theater. We got to take all the kids except Aaron, and Mary who was at college.

Friday, November 11th: Like many, I'm thankful for all who serve and have served in the military, especially my favorite veteran, my dad. It's also his birthday. He and mom taught me and my siblings to love and respect our country and all that it offers us. I'm also thankful for my sister, Liz, who share's Dad's birthday. She's always there for long talks about whatever. Just wish she lived closer!

Thursday, November 10th: I'm grateful for my oldest. I have so much fun just talking with her. I'm grateful to include my daughters as some of my best friends. They have grown up to be wonderful women.

Wednesday, November 9th: I am grateful for my husband. I came home frustrated and tired and ready to lash out at the world. He put his arms around me and just let me rant.

Tuesday, November 8th:  I'm grateful for my Michael. He's so sweet. He came running up and gave me a big hug last night. Then he fell asleep in my lap. Wonderful feeling.

Monday, November 7th:  I'm grateful to be home.

Sunday, November 6th:  I am grateful for the sacrament and the chance I have to renew my baptismal covenants. I'm grateful for the other parents here from whom I draw strength. It's good to sit with friends in church.

Saturday, November 5th:  I’m grateful for medical technology and those who use it to help us enjoy life. Today we have a 15 pound portable machine that does the work that the iron lungs did when children of my father’s generation had polio. 

Friday, November 4th:  Today is easy.  I’m grateful Aaron is doing so much better.

Thursday, November 3rd:  It’s my mom's birthday today. I have so many things to be grateful for, but today I want to focus on her. My mom is awesome. I was a pretty bratty kid, especially as a teen, but she was always there for me. Since I’ve grown up, I can’t believe how incredibly brilliant she’d become. I’m glad she’s part of my life. I learn so much from her. I’ve had a lot of people tell me what a great mom I am, especially over the past year and a half. But I learned it all from her. I just try to do what she did. I love you, Mom, happy birthday.

Wednesday, November 2^nd, I’m grateful for a hospital staff that is so invested in Aaron. I can’t walk or sit anywhere without someone asking about him and how he’s doing. Doctors, nurses, respiratory techs, social workers, cleaning people and even the ladies who manage the hospitality cart. They genuinely care. And two days ago, a nurse who hasn’t had him for months, finished our conversation by saying, “I will pray for him.” That meant so much to me.

Tuesday, November 1^st, I’m grateful for teachers who are willing to go above and beyond in helping my other children stay on top of their school work, and to help me know when they aren’t. I’m grateful my husband is helping them stay on top of that same homework while I’m gone (and often even when I’m there!).

Another Angel

I'm not sure where this post is going, so please bear with the ramblings.  Or at least know you've been warned.

Aaron continues to do well.  He's finally off all his antibiotics, for which his little bum and our diaper bill thank him.  He had a little bump from the weather front that blew in over Friday to Saturday, but that meant that we gave him a second albuterol treatment in 24 hours.  He can have up to four.  Last night, the only alarm I heard was his high oxygen alarm.  We like that one.  All we do is turn the oxygen down a little.  His nurse said he'd set off quite a few vent alarms, but that was because he was having so much fun wiggling and playing on the floor, not because there was any issue.  So that's the Aaron news.

Early Sunday morning, heaven gained another angel.  Little Sophia was (and is!) 26 months old.  Her mom took her in Saturday night and she had double pneumonia.  Early Sunday, it was just too much for her little body and she went home.  My heart aches for her sweet family.  She had a wonderful smile that would brighten my day.

Last Februray,when Aaron had pneumonia, I was more scared than at any time since he had first come home from the NICU.  More than when he was in heart failure.  More than when he was life-flighted from our home.  A member of the Rainbow Kids team told me that pnuemonia was often called an old man's best friend.  Meaning it helped him leave this life.  She then said it can also be the best friend of younger people, too.  I firmly told her, "That's fine, but it's not for Aaron, not now."  I know she was trying to help, but it didn't.  If it's an old man's best friend, I think it's the worst enemy of a mom with a medically fragile child. 

As I was thinking about Sophia and her mom, I thought of how different the pain of grief can be.  Obviously, I haven't yet experienced what she and so many other moms have.  But I did have the experience of carrying a baby that we weren't sure if we would ever hold alive in this world.  That grief was immense.  Every day, I wondered if that was the day his kicks would stop.  Every night I went to bed praying that I would feel him again, and that if it was going to be the last time I felt him, I would remember it. 

When a woman is in labor, it's common perception that she can say and do no wrong.  The pain is so incredible, that she is supposed to be forgiven anything.  You just understand that she's not in her right mind.  Why is it that we don't understand that about grief?  I would think that pain would be so much worse.  And so much longer lasting.  But after a period of time, a few days, a week or two, maybe a year, so many expect you to be back to "normal".   But losing a child changes you.  If it's true that in becoming a mother, you allow your heart to go walking around in another body, how do you reconcile to that heart being stilled? 

We chose not to say anything about Aaron's condition to anyone outside of family and a few close friends who were in unique situations to offer comfort and advice.  The main reason?  I knew I was not able to deal with other people's comments and questions.  I didn't want to have to stand there and listen to well-meaning but cliche ideas and smile and thank them.  Moreover, I didn't think many would understand if I turned and walked away, especially if I preceded it with a cutting remark of my own.  We simply had too much to deal with with our own emotions to have to worry about someone else.  

My visiting teacher, upon finding out and learning why we hadn't told people, asked me to tell her what it was she should not say so as not to cause me more pain.  I couldn't tell her.  The thing is, my reaction is based on what is said, who says it, and mostly, my own emotions at the time.  There are no magic words to make the pain better.  There is no magic wand to heal the hurt.  What helps at one time, can hurt at another.  And while I've said I was grateful for his perfect spirit, and so have family members and close friends, when a woman I had just met told me that our family was so blessed to have this celestial spirit in our lives, I wanted to slap her and scream "shut up".  Because at the time, my little one-week-old baby was balancing on the edge in a NICU, and I wasn't with him.

So what do you say to someone who has lost a child?  I'm really not sure.  The pain, and the journey is so individual.  And you don't get to draw a straight line from point A to point B and say, "I'm here right now and I'll be done when I get there."  It takes a circutous route, full of detours and bumps and washed out bridges.  A smell, a sound can take you back to the beginning, like being bumped back to starting line in a game.  "I'm sorry" is the only thing I can come up with that is always good, and so are hugs.  Beyond that, I think you have to let the Holy Spirit guide you.  Because only God knows where each person is in their journey. 


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Thankful Thoughts:
Saturday, November 19:  Today I'm thankful I was able to get a lot done here, and I didn't have to go anywhere. Yea for staying home!

Sunday, November 20:  I'm thankful for Sunday afternoon naps, and a wonderful 15 year old who watched over Aaron so I could ignore the alarms for a couple hours.  Take that, migraine!

Monday, November 21:  I'm thankful for my warm, dry house when it's so dismal and wet outside.

A Stander!

Getting his breathing treatment

I'm quickly coming to the conclusion that Aaron is going to have to have a breathing treatment daily.  He's supposed to use albuterol on an "as needed" basis, but that need has been almost exactly 24 hours apart for the last several days.  He can actually have it up to four times a day, so I guess we're doing okay.  He uses an inhaler and we just put it in-line in his vent circuit.  

Playing on the blanket.  Probably the
last time he gets to wear this outfit.
It's the very hungry caterpillar
 and the words say,
"And he was Still hungry!"

 Aaron's physical therapist came yesterday and brought this really neat device.  It's called a stander.  (And I'd be willing to bet that on the kindergarten homework, Michael is the only one with a "stander" listed under the objects a magnet will stick to!)  


We lay it down and put Aaron in it.  It has straps over his chest, tummy, knees, and some for his feet, too, except they're too small for the straps to reach.  


Then there's a foot lever in the back that let's you raise it up to, you guessed it, a standing position!  The world's a bit different from this point of view.  He can play with his toys and look at his mirror here.
 

I think I might be getting a little tired.

Okay, so it must be comfy.  He played all night and I guess still wasn't really ready to work even though it was after 1 p.m.  Since I didn't get him out, he decided to just go to sleep standing up.  I thought only horses could do that.






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Thankful Thoughts:

Wednesday, November 16:  I'm grateful Aaron is on 1 1/2 l of O2. First time he's been below 2 liters in almost 4 weeks! Go Aaron!

Thursday, November 17:  I'm grateful for my 6th grader's teacher, Mrs. V.  She told the kids they got 200 extra credit points in math if they adjusted a recipe (doubled, halved, etc) and made it for their family.  So tomorrow, we get to wake up to crock-pot french toast, made by Joseph.  YUMMY!


Friday, November 18:  I'm grateful for my three oldest sons.  The last almost two years have been difficult for them.  We've tried to keep things as normal as possible, and keep them in the activities that they love.  We've been pretty successful, but I have to say that's because these three have really stepped up to the plate.  They have been great to keep reminding me of what is going on and have been quite resourceful in making things happen.  I love how responsible and caring they are.  Love you, David, Jonathan, and Matthew!

Christ and Christmas Music

Christmas approaches and carols are ringing.  For those who perform Christmas music, the tunes began many weeks ago.  I am privileged to participate in a community Christmas choir called Joyful Christmas Sounds.  I've found some of my favorite carols this way.  "Were You There When the Angels Sang?" by Marvin Payne, "Jesus Christ the Apple Tree", and many more.  It's wonderful to sing under Marvin's direction.

I've always loved music.  Back when I was a small child, I loved to sing.  Now, it wasn't pleasant to listen to.  I didn't know this until years later when I found a tape recording I made and it was AWFUL!  It finally dawned on me why they made a children's choir.  It was to get me OUT of the adult one.  Picture a very enthusiastic nine-year-old who really should be singing 2nd alto but thinks she sings 1st soprano.  Yeah, not a good sound.  Bless my mother and the other adults who never told me how hard it was to listen to me.  Eventually, someone suggested I try the alto part and sat me next to another strong alto.  And I learned to hear it, and my soul learned to feel the Holy Spirit through music more than any other medium.

I missed singing last year with the choir last year.  Aaron was just so fragile, not to mention that we lived at the hospital for most of November and the first part of December.  But this year, I've been fortunate enough to participate again.  We are singing several pieces from the Messiah.  We're also singing a Latin piece called Pie Jesu.  It's a John Rutter piece from his Requiem.  A beautiful song, it is for a funeral.  Marvin mentioned that it might seem odd to be doing it, but that we'd understand how it fit in.  I think it is very appropriate.

I love to sing the songs of our Savior's birth.  I love to rejoice and sing the Hallelujah's.  But the truth is, without the atonement, the crucifixion and resurrection, it would have been just another birth.  This life is just an intermediate stop.  Without the rebirth that springs from the resurrection, all hope would be lost.  So I don't think it's at all odd to be pleading with the Savior to grant eternal and everlasting rest.  Death is a part of the plan.  Because of our Savior, it is not the end of the plan, only a part of it.

So, I will joyfully sing "Unto Us a Child is Born" and about "The Glory of the Lord."  I will plead with the rest of the choir in "Come, Lord Jesus, Come."  We give all "Glory to God".  And as I practice at home, I sing "Still, Still, Still" another favorite, a lullaby, to Aaron.  But it is His death and resurrection, and the promise that they bring, that is the ultimate reason behind Christmas.  "Christ" means "the anointed one."  He is the One who was anointed before the world began to come to this earth, to teach us the ways of God, and then to offer His perfect life as a sacrifice, meeting the demands of both justice and mercy, so that we can live eternally.  Hallelujah, the Lord God Omnipotent reigneth and He shall reign forever and ever.  Lord of Lords, King of Kings.  My Savior, my brother, my friend.

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Thankful Thoughts:
Monday, November 14:  I'm grateful for albuterol, and that it acts fast.  It's so great to be able to see Aaron go from struggling to really comfortable and happy within just minutes.  I'm grateful for those who have developed these medications and for those who have taught me how to take care of my baby.

Tuesday, November 15:  I'm grateful for a job that lets me work my own hours from wherever I am.  There aren't many things I can do because we can need to leave at any time and spend unknown days at the hospital.  But my job is anywhere I can get an internet access and I have a 29 hour turn-around on what is usually a 3-6 hour assignment.  Any my supervisor has been great to tell me to just let them know if I need additional time off in regards to Aaron.

Trying to Get Better

Mom, can't you see
I'm trying to sleep?

Aaron's had a rough week, but he's hanging in there.  He's still sick, but we've been able to support him here at home.  Fortunately, he hasn't had to go anywhere this week, and I don't think we're going anywhere next week, either.  His oxygen requirments are still high, but not nearly has high as they have been.  So there's definitely some improvement. 

It's been another learning curve for me this week.  He gets eight different medications per day, with a total number of administrations of 17.  And he also has albuterol as needed.  The challenge is to determine if it's needed.  If he's having trouble keeping his airway open, the abulterol makes it worse.  But, if they're swollen and reactive, it makes it better, almost instantly.  So that's where the new lesson comes in.  Does he need it or not?  And with most kids, you can just listen for wheezes and tight sounds to tell if they need help.  Aaron can sound like that if he needs suction, or if he's got a larger leak around his trach, or if he needs a breathing treatment.  But we're learning. 

He had a occupational therapy visit this week.  We've missed our last several because he was in the hospital.  We're trying to strengthen his trunk muscles, so we practice sitting, and standing while holding his legs between ours.  He also uses some braces on his arms and gets in a crawling position, then tries to lift his head.  Let me tell you, this kid is one hard worker!  He doesn't quit.  He just keeps trying.  I usually stop his therapy when his heartrate is over 160 for a prolonged time.  But he doesn't stop.  He's my inspiration when I think things are getting too tough.

Today, he stayed home with a nurse while we went to the Hopekids movie.  Hopekids is a wonderful group that helps families whose child has a life-threatening diagnosis.  They help us feel normal, and give hope, a priceless commodity in this world of the medically fragile.  Because the weather has turned, and he's still fighting his pneumonia, I really didn't want to take him out.  She's coming again tomorrow morning so both William and I can go to the Primary program at church.  Yeah, he's grounded again. It's just too bad that it's not what he does that gets him grounded.  It's all the germs that he gets exposed to.  Talk about being punished for something someone else does.


Through all of it, he continues to play and smile, between naps.  In the video, I was just telling him he needed to behave and he had been shaking that little finger back and forth, "no, no, no."  Of course, he quit when we went to get the camera.  But he still had fun playing with Deborah.  I just love his smile.

Thankful thoughts:
Wednesday, November 9th:  I am grateful for my husband. I came home frustrated and tired and ready to lash out at the world. He put his arms around me and just let me rant.

 Thursday, November 10th:  I'm grateful for my oldest. I have so much fun just talking with her. I'm grateful to include my daughters as some of my best friends. They have grown up to be wonderful women.

Friday, November 11th:  Like many, I'm thankful for all who serve and have served in the military, especially my favorite veteran, my dad. It's also his birthday. He and mom taught me and my siblings to love and respect our country and all that it offers us.  I'm also thankful for my sister, Liz, who share's Dad's birthday.  She's always there for long talks about whatever.  Just wish she lived closer!

Saturday, November 12th:  Okay, this sounds silly, but then, I'm not a cold-weather girl.  I'm thankful for seat warmers in the car.  Actually makes dropping off and picking up kids bearable.  Also thankful for Hopekids.  It's so nice to just be able to go out and have some "normal" fun at a movie theater.  We got to take all the kids except Aaron, and Mary who was at college.

So onward and upward!  I'm hoping to have time for another post tomorrow.  I've found it's hard to do one during the week when I'm also working.  Thanks so much to everyone who keeps Aaron in their prayers.  It means the world to us.

Home, Sweet Home

I've had some questions about my reference to a strange x-ray on Sunday morning.  It had suggested a possible pnuemothorax, where there is a pocket of air OUTSIDE the lung instead of inside.  It looked small, and the radiologist said he really wasn’t sure, so the plan was to decrease a little bit of air in his cuff to make his leak a little bigger and repeat the x-ray this afternoon.  That afternoon’s x-ray?  Yeah, no pneumothorax, but increased atelectasis (collapsed lung tissue).  Crazy baby.  He’s always got to have something going. 

I'm ready to get outta here!

Anyway, Sunday his heart rate was also been elevated.  It’s probably in response to his albuterol treatments.  So now, I get to figure out if he’s wheezing and only give treatment when it’s needed.  That could be interesting.  Lungs need it if reactive, but heart becomes tachycardic.  So which way to go…

Sunday evening as I left for shift change, Aaron really wasn't looking too great.  He was uncomfortable, needing more oxygen, running a little higher on his temp, but not a true fever.  (Parents have to leave the PICU during shift change from 7-8 am and pm.)  When I came back, he had just filled his pants, really well.  And guess what?  He started looking a whole lot better.


We had a quiet night on Sunday night and prepared to come home on Monday.  We had to switch from IV antibiotics to oral and get all his medications together.  Also needed to let his home health team know we were on our way.  Then it was out the door!


We got home and he was thrilled to be back in his own bed.  He played with his mobile a little bit, and then just fell fast asleep.


But it didn't last.  He had a rough night last night, going much higher, again, on his oxygen.  We had two nurses because one is orienting.  They got me up about 4:00 this morning (but I slept until then!) and we gave him his albuterol.  Then when I got up at 5:30, we gave him another breathing treatment.  At one point, I had him on 9 liters of oxygen and struggled to maintain 90% sat rate.  Let me tell you, it was not fun.  Was just on the verge of calling 911, yes, again, but I was still pulling junk out of him.  It helped some.  Plus he was cold.  His temp was down at the bottom of his normal range.  So I put a warm pack on him to help him warm up a bit.  He's doing much better now.  He's dropped to 3 1/2 liters and is resting quietly.  It seems that whatever was bugging him so much during the night is gone, at least for now.  

I'm just really, REALLY hoping to not go anywhere.  And by that, I mean ANYWHERE.  Besides driving my carpool, I don't even want to leave the house for several days.  But mostly, I don't want to end up back up at the hospital.  Please pray that we can kick this and stay home.  Because the biggest reason I don't want to go back?  I'm not sure there's much more that they really can do to help him past this right now.  We spent the better part of the past 2 1/2 weeks in a fight for his life.  I know that so many more fight much longer, and yes, on a day-to-day basis.  But I'm tired.  And I need to regroup before we do this one again.  Besides, I miss my bed.

We stopped at Shriners on the way home
to get his braces.  They are so cute!

Yesterday, I was grateful to be home.

Today, I'm grateful for my Michael.  He's so sweet.  He came running up and gave me a big hug last night.  Then he fell asleep in my lap.  Wonderful feeling.

Memories and Thoughts on Sacrifice

Today, I am grateful for the sacrament and the chance I have to renew my baptismal covenants. I'm grateful for the other parents here from whom I draw strength. It's good to sit with friends in church.

Aaron did well all night on his home vent. He's trying to decide if he's throwing another curve ball here, though. His x-ray this morning was a bit strange, so they let him have some time and have just repeated it. I've seen almost every x-ray we've ever done on him (and let's just say that I think he now glows in the dark!) and it looks a bit stranger than the first. Hoping it's just odd, and not bad.

Anyway, this seems to be a time for reminiscing for me. Some dates just really stick out in your mind. This week has some of those. One year ago yesterday, we learned that Aaron had a very compromised airway. But his doc wanted to give him a shot at breathing. He’d never seen anyone able to breathe with so much collapse, but he pointed out that Aaron obviously had been.

Usually, if a child ends up in the PICU still intubated from surgery, the PICU team extubates, or pulls the tube when they feel the child is ready to not be on the ventilator. The attending or fellow (top dog in the PICU) is there and, of course, precautions are taken.

Then there was Aaron. When the team came to extubate him, I told them I thought Dr. M, his ENT, had said he wanted to be there when it happened. I really wasn’t sure, but asked them to call him to double-check. No problem. They did, and he did, so we put it off until Saturday, November 5, one year ago today. They also parked the crash cart outside Aaron’s room. I chose not to ask if that was typical protocol until fairly recently. I didn’t think it was, and I didn’t want to know then. I was right. It’s not.

Saturday afternoon came and Dr. M came by. Because he was known to have a difficult airway, and there was a good chance that he would not make the jump, sedation and paralytic meds were prepared and ready to go before they pulled his tube. He was put directly on a high flow of oxygen at 8 liters per minute and he tried. He tried and we watched. And he tried some more. My little guy worked with all he had to breathe. He wanted to so badly. He finally passed out from the exhaustion of trying to breathe. Somewhere in the whole process, they poked his toe to get some drops of blood for a blood gas test.

Remember pH testing in high school chem? Our bodies like to be in balance. They like 7.4. Acids and bases need to work together for a balance. It’s not great if one is too high, but if the other can come up to help stay balanced, it still works. When we breathe out, we exhale carbon dioxide, or CO2. It’s an acid. Our kidneys make bicarbs, a base. Any CO2 above 45 on a blood gas is high. Even at 45, we’d be panting like a dog just to get rid of the CO2. When you hold your breath, it’s the buildup of CO2 that makes you give up and start breathing again. Before his surgery, Aaron usually hung out in the high 50’s or low 60’s. But as long as he was there, his kidneys were able to help him stay balanced. Much above that, and he’d need some help, usually from high flow oxygen, to blow off the CO2.

That blood gas they pulled, probably five minutes into the trial, it was 130. The machine stops measuring at 130, so we really don’t know how high it was. His pH was 6.8. Doesn’t sound like much, but, trust me, the body thinks it’s huge. So we made the decision to have him trached.
I was scared, I was so scared. But I kept hearing a back-to-school speaker challenging the kids to do hard things. He told them, “You can do hard things.” And I kept hearing that in my mind over and over. And I knew we could do it. The challenge has been great, but the blessings that have come from taking on this challenge have been so huge.

The definition of sacrifice is giving up something in exchange for something else. The Bible dictionary in speaking of sacrifices in Bible times says, “Sacrifices were thus instructive as well as worshipful. They were accompanied by prayer, devotion, and dedication, and represented an acknowledgment on the part of the individual of his duty toward God, and also a thankfulness to the Lord for his life and blessings upon the earth.”

There have been sacrifices this last year. Many of them. But what I have given up in exchange for being able to love and care for Aaron pales in comparison to the blessings, both seen and unseen. I have been taught and instructed, both by family and medical professionals, and by the Lord. I have come to rely on Him for my strength. I knew He was there before, but not as I do now. I am grateful He was willing to entrust Aaron and his special spirit to our home for our learning and growth.


There have also been miracles. Many, many miracles. As I've sat here and read through my notes from last November and December, I am overwhelmed with the goodness and grace of God. I am in awe of the love and support and prayers offered on Aaron's and our family's behalf.

Many dream of angels, we hold one in our arms. And as we do, our angel ministers to us.

Home Vent!

Home Vent!!

Home Vent!!  We switched over about two hours ago, and he’s doing great so far.  He’s even on 1 ½ liters of oxygen!  He did really well all day on 40% oxygen bled into the hospital vent and the same vent settings as his home one, so this evening, we thought we’d try to switch back.  He had been on better settings on the hospital vent, but our home one isn’t as sensitive and can’t be programmed the same way.  Hopefully, it all goes well.

One year ago after g-tube/nissen surgery

One year ago today, we came in for a g-tube and nissen surgery.  That surgery saved his life.  Unknown to us, Aaron’s airway was collapsing, or actually, collapsed.  Without that surgery, we would not have known.   I don’t think he would have made it another week.  Thanks to many people involved in his care, many prayers, and the grace of God, we still have our little guy. 

Today I’m grateful for medical technology and those who use it to help us enjoy life.  Today we have a 15 pound portable machine that does the work that the iron lungs did when children of my father’s generation had polio. 

We've Gone Around!

That corner that has been so elusive?  Yep, we've gone around it!

That "45" in the little blue circle on the bottom?
Yep, that's how much oxygen he's getting.
Below 70 for the first time in a LONG time.
(At home he's in the nieghborhood of 30-35)

Today has been a very good, good day.  Aaron’s on 45% oxygen.  Today’s just a resting day.  We’re continuing the therapies he’s been getting, but not changing or pushing anything.  He’s doing SO well.  His labs from yesterday are still negative for bacteria and other less common viruses.  It really looks like it was all the swelling in his lungs that made it so hard to process his oxygen.  The albuterol is working wonders to reduce that.  They’re stopping short of calling it asthma, but say that he does have “reactive airways,” which is essentially the same.  We’re hoping since we haven’t seen this before, that it is just because this virus has irritated his lungs so much.

These are his vitals while on that 45%
oxygen.  That blue 95, that's what
we're liking.

It will still be a few days before we make it home.  They need to finish growing out his cultures, make sure he’s stable here, then switch to our home vent and make sure we’re stable on that one.  But we’re heading the right direction, and at a much faster speed!

But anyway, it’s a good one!  He’s happy and playful, and popping himself off his ventilator quite often.  Little monkey, you need that for breathing!

Today’s gratitude thought is easy:  I’m grateful Aaron is doing so much better.

Still Haven't Rounded that Corner

Well, the little guy earned himself a bronchoscopy today.   He's still really happy, but last night he slid backwards a little instead of continuing forwards.  To do this, they give him propofal (yes, think Michael Jackson, but administered correctly by a team watching carefully) to keep him comfortable.  Then they take a tiny suction catheter with a camera on it.  They went down and washed out his lungs.  They pulled secretions and he also had a little bit of blood down there.  Dr. D, his pulmonologist, said that it looked to him like it was irritation-caused and the secretions were viral.  They sent them down to the lab, and so far, it looks like he was right. 

They also gave him an albuterol treatment because his lungs were quite “reactive” or sensitive.  Good news is, his malasia, or floppy airway, is MUCH better than it was last November.  That’s why and when he got his trach.  His ENT doc said at the time, “I don’t know how he’s alive.  I’ve never seen an airway so collapsed on someone who was still alive.”  He certainly still needs the trach and vent, but he's much less fragile than one year ago.  Apparently, all airways collapse a tiny bit when we cough.  It’s just what happens.  And when he was being bronched, he coughed quite a bit so they were able to see well how things were going.   

Since his labs are coming back negative, and he responded to the albuterol, they’re also starting him on steroids to help combat the inflammation they saw down in his lungs.  The hope is that if the inflammation goes down, the oxygen will get down to the alveoli better and he will process better.  Then we might even be able to make some progress towards home!  Wouldn’t that be great??

In keeping with finding things to be grateful for, I want to share my mom.  It’s her birthday today.  I have so many things to be grateful for, but today I want to focus on her.  My mom is awesome.  I was a pretty bratty kid, especially as a teen, but she was always there for me. Since I’ve grown up, I can’t believe how incredibly brilliant she’d become. I’m glad she’s part of my life. I learn so much from her.  I’ve had a lot of people tell me what a great mom I am, especially over the past year and a half.  But I learned it all from her.  I just try to do what she did.  I love you, Mom, happy birthday.