Happy Birthday!!

Today is Aaron's 3rd Birthday.  That's right, 1093 days on this earth, with our family, blessing us with his spirit.  And how's it going?  How's he doing?  Well, he's fitting right in.  This year, he joins the rest of us in celebrating his birthday on a day that's more convenient that the actual day of his birth.  We'll be having his party on Saturday at our home from 6-8 p.m.

But today, he's just hanging out with Mom and Michael and playing.  Michael spent time in his bed with him this morning, hanging out, reading books and just playing.  He's setting off a ton of alarms, but that's because he's so wiggly and playful.  Just, "hey, I'm right here, being cute, don't forget" alarms.

He had been increasingly unstable starting around the weekend.  Using more oxygen, desatting more, any of this sound familiar?  By Tuesday, I could really tell my stress level was up, quite up.  But I just couldn't figure things out.  Then Tuesday night, when I went in to give the nurse report, I noticed a large chunk of wax on his right outer ear, followed by a bunch of yellow pus (too much info?).  Yep, we've got ourselves an ear infection.  I felt like celebrating!  Yeah, I know, not usually a cause for celebration.  Usually a cause for tears on both mama and baby's part.  But not for us, not for him.  Now I have an explanation for what has been going on.  And it's a simple explanation, a fixable one.  And even better, we started fixing it right that minute.  We have standing orders for ear drops and keep them on hand.  So we got going!

And he's done much better, much, much better.  I've spent the last week gathering and making things for him to replace what we're having to give back to his early intervention team.  With his third birthday, he ages out of their system and into the public school system.  So the leg braces and yoga ball and long sitter and table (and maybe a few more things?) have to go back.  Last week I made him leg braces and a weighted blanket.  I've got the materials for his long sitter, I just have to find time to create it.  The table?  Well, that's in the brain, but I haven't even managed to get the wood for it.  It's a totally simple thing, but it just hasn't happened yet.  And the yoga ball, well, that one I'll just have to buy.  But at least it's not labeled as medical equipment, so it's reasonable.

Anyway, he's napping now, resting up for his party.  We're grateful to be celebrating another one with him here.  And we're so very grateful for all the support from his medical teams and all the prayers that are offered in his behalf.  One man at church told me last week that their little daughter makes sure he is remembered in every single one of their prayers, and if they do somehow forget, she always reminds them.  I asked him to tell her thank you from us.  I'm sure those prayers play a large part in giving him strength.

You can hope for a miracle in your life, 

or you can realize that your life is the miracle.  

~Robert Brault

Be Still, and Know That I Am God

Yesterday in church, the lesson was on seeking the will of God instead of our own.  Intellectually, in my brain, I know He has great things in store for me, and that if I trust His will, He will lead me home.  But the child in me, the scared, self-centered, wants-to-be-comfortable-at-all-times me, well, she has a hard time with that.

I was immediately reminded of when I was carrying Aaron.  We saw miracles.  There is no doubt.  I've got the ultrasound from our 20 week appointment (I have DVDs of all his ultrasounds) and his cardiac arteries are not right.  They are not crossed.  They are parallel.  There are a few things that cause this, and none of them are good.  Five days later, following fasting, prayer and a priesthood blessing, they cross.  A miracle, a huge miracle.  One that gave our son a chance to live.

But, while I do believe in a God of miracles, when I was asked if I had enough faith to ask for that third chromosome to be removed, something stayed me.  Somehow, in my heart, I knew we were not supposed to ask for this.  This was a challenge that Aaron was supposed to have, and that we were all to learn from.  And by the way, this is way before I was in any way "okay" with his diagnosis.  This was while I was still pregnant, where every night when I went to bed, I would wonder if I would ever feel him kick again, if his heart would stop beating while I slept.  So while I didn't pray for that to be removed, I was still in agony.  And I really had very little interest in any lesson I was supposed to learn.

That has changed.  I am so grateful that He would send Aaron to our home.  We won't keep him nearly as long as I'd like, but the joy he has brought to our lives is priceless.  I don't know if would feel the same now had he not lived for at least a little while.  I hope I would, but that was not a path I was called to follow.  I do know that I would do this all over again just to experience the blessing of having such a perfect spirit in our home.

There have been setbacks along our journey, the most recent yesterday afternoon.  Kinda funny how it's come about, too.   Two and a half years ago, Aaron was sent home from the hospital on a PEEP of 8.  It wasn't enough.  Oh, he did okay, more or less, for a few days.  He was actually a bit unstable in the hospital, but we chalked it up to other things.  Then when he came home, his oxygen needs increased daily by a full liter to keep him where he belonged.  At the time, I was so new to it all, I didn't recognize a problem.  The long and short of it was, he ended up being lifeflighted from our home and needing higher vent settings.

But now he's stronger, healthier, and should be able to do more with less.  Well, maybe.  As I said earlier, we've had another setback.  But perhaps, because it's so recent, I can clearly see tender mercies leading up to it. 

I have been anxious to wean him off the ventilator.  Not only would it mean not lugging a 22 pound bag that is attached by a six foot cord, it would also be a really good thing for his heart and lungs if he didn't need it.  But after last week's adventure, I've felt in my gut that it was the reduced vent settings.  We came home from the hospital, and he's been looking pretty good.  But the last couple of days, he's been less stable on his oxygen, and creeping up again, not nearly as fast as two and a half years ago, but still increasing.  Yesterday, right after church, he decided to play games again.

We got home from church, where he'd been a little oxygen piggy, and he decided he wanted "more, Mom."  "And some more again, please?"  Yep, ten liters, again.  After 30 minutes, and struggling to keep those 90 sats, and then dropping some when I gave Albuterol, I decided to change his settings.  He's done better at maintaining sats since then, and he's been more active, too.  Yeah, I think that's what he needed.

So we've taken a step backwards.  And it's a tiny step, but one I fought for quite a while.  However, I was very blessed on Friday night to sit by another mom at Dream Nites at the zoo (subject for another post later).  Her son is 12 and trached and oxygen dependent.  He also uses a vent at night but not during the day.  She reassured me that it took a looooong time (years) to get to this point, and they also had many stutter steps and back slides along the way.  A tender mercy, being able to speak to her. 

So we're not at the end, not even close.  And we won't give up.  But Aaron has to have the support he needs.  And so, I'll take a deep breath (and be grateful that I can) and know that God is in the details of our lives.  He watches over all of us, and the smallest sparrow does not fall without Him seeing it.  And I will trust that He knows what is best for me, for Aaron, and for our family. 

All the art of living lies in a fine mingling of letting go and holding on.  ~Havelock Ellis

Party Time!! Are You Coming?

I'm gonna have a PARTY!  Yep, it's time again.  I actually turn 3 on Thursday, but Dad and the big kids are all involved in running a Cub Scout Day Camp this week, so we're celebrating on Saturday.  Yep, I'm even big enough that now my birthday is being celebrated on the most convenient day instead of always exactly on.

Anyway, you're all invited to stop by and have some cake and wish me a happy birthday.  We'll be sending balloons off to my angel friends again, thirty-six of them this time, one for each month of my life.  We'd love it if you brought some, too.  That way they can have even more to play with.

See you Saturday!!

Life is a great big canvas, and you should throw all the paint on it you can.  ~Danny Kaye

Home, Sweet Home

Someone's happy to be home.

We're back at home, and it's really nice.  Made even nicer by what the kids did while I was gone.  Deborah, Michael and Andrew vacuumed, mopped, clean the bathrooms, and even made my bed for me.  SOOOO nice to walk into a clean house.  Bonus, Deborah's got plans for meals for the next few days and she's also got the boys helping her with that, too.  I may have to check out more often, just not to the hospital, please.

We really have no new answers.  And no guarantee that he won't pull another "stunt."  I've now bagged him three times in less than 48 hours.  But we've got a couple more tools in the toolbox, probably most notably instructions to increase vent settings if it happens again.

It's kind of funny.  If he dropped his oxygen saturations in the hospital, that would earn him another eight hours in the PICU.  If it happens at home, I'll just change him myself, and give pulmonology a call, of course, to update them.  It's just that hospital protocol says that any ventilator settings have to be done in the PICU and observed.  Safety, you know.  Kind of important.

My biggest worry was that he might do it again in the car on the way home.  I feel fairly confident in my ability to handle it here at home and at the hospital there's a whole slew of people to help.  But in the car, in a confined space, with only the oxygen on hand, not so much fun.  (Although we did have extra oxygen with us.)  Thankfully, he did not.

So we'll just keep on keeping on.  But if he and his pulse/ox machine decided to just play nice and not cause any more issues, I would be oh so grateful.  'Cause this mama, right now she's a bit on edge.  And I'd like my own heart rate to go back to a normal level, for a long time.  I'm grateful for the knowledge and the support, but it would be okay if I could just rest before the next time.

“Rest is not idleness, 

and to lie sometimes on the grass on a summer day 

listening to the murmur of water, 

or watching the clouds float across the sky, 

is hardly a waste of time.”  -Sir John Lubbock  

Grasping at Straws

So this morning I woke up and Aaron was looking fabulous!  Absolutely beautiful!!  He was sound asleep and his heartrate was in the very low 90's, right where it should be, usually is, hasn't been for a week.  And he was on home settings, although at the higher end of normal for his oxygen.  Wonderful!  What happened? Who knows.  The consensus was it was probably a plug ((shudder)).  Yeah, it's exactly what it sounds like.  A plug of mucus, plugging, or blocking, the airway.  Um, yeah, NOT a good thing to have, but it looked like we had worked through it.

So what to do?  Go home?  Hang around?   PICU or floor?  Maybe have pulmonology take a peek and be on our way.  But you don't command a performance from pulmonology, so we wait for a while.  After a little bit, we find there's a room on the floor, and since we don't look like we even need to be in the hospital, there's no reason to be hanging around the PICU.  So up we go, and we'll decide later if we're going on or hanging around for the evening.

Uh, yeah, we're not going anywhere today.  Just after lunchtime, he was sleeping quietly, and started to slip a little on his oxygen.  So we turned him up, and up, and then up some more.  And silly kiddo, he doesn't seem to get that when you turn the oxygen UP, he's supposed to follow up, not DOWN.  But down he went.  So oxygen is going up and he's going down.  He finally decided at about 68% (yep, you read that right, 68%) that maybe he needed to cooperate.  But by then, we're bagging him, again.  I'm bagging and the respiratory therapist is suctioning, and he slowly turned around.

Just as he finished, the pulmonologist came in.  We told him he'd missed out on the party.  And then the attending showed up, too.  Double party!  And we kicked around some ideas.  I just wish there was an obvious answer, and if it was one that I liked, that would be a bonus.

So here's what "might be" happening.  There's a decent chance it was a plug.  At least, it was kinda acting like it.  Except that you tend to get plugs when you're dehydrated (he's not) or sick (nope) or have really sticky, thick secretions (none of those either).  It may be that he's still struggling a little with asthmatic symptoms and he still needs his preventative steroid.  But again, he doesn't sound like it or look like it.  One of my least favorite options is that he just can't handle a PEEP of 8.  Again, that "shouldn't" be it.  He shouldn't be struggling with it after he's been on it for three-plus weeks and had great labs and x-rays.  It doesn't make sense, and that's coming from a couple of the most knowledgable people I know.  But then, there's a lot that Aaron does and has done that doesn't make sense.

This kid doesn't play by the rules, he doesn't read the directions.  And for the most part, we're so grateful for that.  He's made up his own playbook time and again.  So perhaps we just need to continue to follow his lead. I would love to get him off the ventilator at some point in time.  But if the vent is what he needs, then the vent is what he gets, even if it means giving up or at least postponing some other things.

So for now, Dr. U is putting him back on his inhaled steroid long-term.  (I asked how long, and suggested that perhaps at least two months, until MY heart rate had a chance to return to normal.)  We're obviously not going home tonight, and we'll see about tomorrow.  And if he does this again, we'll take that step backwards and increase his PEEP.  On a positive note, for now anyway, his heart rate is back down about where it should be. And he no longer looks all spotted from not having near enough oxygen in his bloodstream.  I'll take that.

“What lies behind us & what lies before us 

are tiny matters compared to what lies within us.” 

~ Ralph Waldo Emerson

Back Up at Primary's, What's Going On??

Okay, this is liable to be a bit disjointed, but for inquiring minds that want to know, and to hopefully straighten things out a bit in my own, here goes.

Hanging out in the emergency room.

Aaron's heart rate has been elevated for the past five days.  I mentioned that yesterday.  Today, I called his pediatrician about it and we decided to get an EKG (look at heart rhythms) a chest x-ray, and a bunch of labs.  I took him down to American Fork Hospital to do that about 2:30 p.m.  We got back about 4:15 and he actually did pretty well, although I had to turn up his oxygen on the way home to four liters.  When we got back home, he was thinking that perhaps four liters wasn't quite enough.  They weren't big drops, but he wasn't in the mid-90's where he belongs.

I turned him up a bit, and he still didn't come up, so we went with more, and then some more on top of that.  Finally, I gave up and pulled out the bag valve mask again and we bagged him on ten liters, just like last week.  And during this, I'm thinking, this is getting old.  We got him back into the high 90's and put him back on the vent.  For a little while (ten minutes?) he looked pretty good, but then, no dice.  He dropped again.  In a last ditch effort, I gave him Albuterol even though he didn't sound like he needed it.  Didn't work.  We were bagging him again, and also calling for help.

We ended up with quite a crowd in our home.  I didn't mince words with dispatch.  I told them he was in severe respiratory distress and we were already bagging him on ten liters.  He was slowly improving, but only slowly.

Since we've been up here, though, he's really look good, really good!  Like, why are we even here, good.  I/we did open his lungs quite a bit with the bagging because his PEEP valve is dialed to ten, and I figure if he's going to need extra help, we're really going to give it to him and not pussyfoot around.  All the labs and other tests done at AFH look great.  So they're all as stumped as I am.  We may be looking at another echo, just to see if pressures have changed.  We may have masked/undone things with the bagging and opening his lungs as much as we did.

We may just not be able to reduce his vent settings, although no one here seems to think that would have caused all this, not after having been stable on them for almost a month.  So we'll keep looking.  Thank you so much for keeping us in your prayers.  Please pray that we find some answers, and that they'll be answers that we can work with.

Faith is not without worry or care, but faith is fear that has said a prayer.  

~Author Unknown

A Bumpy Week

My Future's So Bright, I Have to Wear Shades

This is another one of those "Look How Much I've Grown" shots.  Wearing Daddy's sunglasses at an appointment when he was two months old, and then again last Sunday.  No, not the exact same sunglasses (they do get scratched, you know), but both pair fit Dad pretty much the same.

Well, this week's had it's share of speed bumps.  If you remember, last week Aaron had lab work that showed he was doing well on his reduced vent settings, so it was time to try to decrease them again.  Um, yeah, that one didn't go so well.

In the beginning, it looked pretty good.  He wasn't breathing faster, no more than the usual oxygen.  He was still needing Albuterol and Flovent for his asthma, but not that much.  In fact, I had spent some time on the phone with the trach/vent coordinator on Tuesday going over plans for the next six weeks.  We'll be taking some time to go to Bear Lake with family, and needed to make sure we had plans for everything.  He was looking really good.  Key word in that sentence:  was.

It takes about 24 hours for the lungs and body to adjust to new situations.  And then, if it's less support (altitude, oxygen, ability to process, whatever) the body works harder.  And sometimes, it gets tired.  Yep, about 8 o'clock on Tuesday night, Aaron's body decided that it was really hard to do this with less of the constant pressure (PEEP).  But I didn't know that was what it was because we've also got the asthma component.  Plus, he was working really hard on dirtying his diaper.  Face it, that can be really hard work!  The upshot of it all was, he wasn't able, even with the ventilator's help, to maintain his airway enough to sustain him. 

Let me tell you, there's nothing like having to bag your baby (force air in with a mask, the "P" for pulmonary, part of CPR) on 10 liters of oxygen to get your adrenaline going.  But I was also pretty okay with things, for a little while, anyway.  With the bag and oxygen, I was able to bring his sats back up.  It took a while to get him out of the very low 90's, (he'd been down in the high 70's to low 80's initially) but I knew that as long as he was sitting there, we weren't emergent.  Had he not tolerated that, or had he not been able to recover within a short period of time, well, that's another story.  But let's just say it would have involved a helicopter in the neighborhood again, and he's already had his turn.

So we got him taken care of and resting comfortably again, and back on the vent.  He repeated it again, although not quite as severely, the next morning.  That time he needed a ton of oxygen but was able to stay on the ventilator.  That's when I turned his PEEP back up to let him rest.  After 48 hours, I tried it again.  This time it was only about three hours before he was struggling again.  So, at least for the next several weeks, we're just going to let him rest and hang out.  We'll let his lungs get good and used to it, and we may start pulling him off again for a little while here and there, just letting him do all the work but for much shorter periods of time.   This marathon may just take a lot longer to train for.

Another bump, I'm hoping it's a nothing/minor one, is that his heart rate has been elevated the past few days.  On Thursday, I took him in because I thought he might have a urinary tract infection.  Nope, that looked good.  It might be his ears, but we usually get drainage and there's none.  He's a lot more restless than normal.  So who knows what's happening.  He's not telling.  But I did keep him home from church, and we're watching, closely.

He's got his third birthday coming up.  It's on the 13th, but Daddy and most of the kids are busy running a cub scout day camp that week, so we'll be celebrating on the 15th from 6:00 to 8:00 p.m.  We'd love to have anyone who wants to come by join us for cake and a balloon release.  Once again, as always, we are so grateful for all the faith and prayers that sustain us and Aaron.

-->

“Water is fluid, soft & yielding but water will wear away rock, 

which is rigid and cannot yield ... what is soft is strong.”  

― Lao Tzu