We're HOME!

Sound asleep, with clothes
in his own bed.

We are HOME!  There was a small hiccup in the night, but while there was concern among his nurse and RT, but in reality, it's just a normal Aaron quirk.  So no biggie.  He had a few desats this morning.  He's still not 100%.  But each time I pulled some thick plugs out and he bounced right back up.  Right now he's sitting a little high on his usage, but it's coming up on time for another breathing treatment and he did have the stress of the car ride home.  He's sound asleep in his bed and we're both grateful to be back.

Here's a few last pictures from our stay.

Playing coy with the camera.
Until it came out, he was full of grins.

A sweet picture a child painted for him.
It says, "Stand out, don't fit in"
and has this cute blue flower among
all the pink ones.

Sound asleep with his menagerie of toys.

Still sleeping.  The little tiger
came from the paramedics
that transported him.

We tag him so we can figure out who he is
in the hospital.  This is in lieu of a traditional
hospital tag.  That hangs on his bed.
Easier that way.

More Progress and a Good Day

My posts have gotten shorter because there's just not a lot to tell, which is a good thing.  Aaron weaned all the way of his nitric oxide today without too much trouble.  He got down to the lowest setting very easily.  When we turned it off all the way, he had a little bump and needed more oxygen for an hour or so, but settled back down. He's now on his home ventilator, home settings.  At the moment, he's using three liters of oxygen with them.  That's kind of our threshold. 

If he can maintain at that or lower, he's probably good to go.  While we can support higher oxygen needs, it usually signals there's an underlying process that's going to cause problems.  And frankly, coming back to the hospital after only a few days is really depressing  So that's where we are right now.  When he's awake, he's smiling and happy and wiggly.  You know, like a baby.  When he sleeps, he's restful.  Everything is pointing to him being so much better.  He just figured he wanted all ten days of the seven to ten day virus.

And in keeping with those small miracles, I got another one today.  I was craving something, almost anything, to munch on.  I have food here, but not munchie food.  Then just as it was hitting the hardest, I got called to the front desk.  There was a woman I don't think I've ever seen before.  She said she was a friend of a friend who just wanted to send me a little something.  Guess what?  MUNCHIES!  I have thoroughly enjoyed them all afternoon.  There was also a special painting from one of her kids and a toy for Aaron that he's had lots of fun hitting in his bed. 

I am so grateful for the tender mercies, big and small.  The big ones that allow us to continue having Aaron in our home, and the small ones that make me smile. 

The Lord is good to all: and his tender mercies are over all his works.

Psalms 145:9

Happy Baby!!

We have a happy, smiling baby today!  And his numbers reflect it.  They've started the weaning process from the nitric and we will hopefully be off by tomorrow morning.  As long as he keeps his vitals stable, we should be able to try to move to his home vent shortly after that.  After a trial there, we'll be homeward bound!!!  YEA for home! 

I woke this morning to his playing with his balloons again.  He was having a great time.  And the resident who examined him said this was the first time she'd seen him smile.  I'm glad she got to see that.  He's normally so happy.  He did lose yet another IV.  This time they weren't able to get another one in.  We pray we don't need access, because let's just say that other access options are not a fun idea and leave it at that.  For those who wonder, when I left his room he was sleeping and satting about 93% on 40% FiO2 (remember, the oxygen bled in through the vent) and only 5% nitric oxide (down from 20 originally).  His heart rate is a little high for him, but still well within normal.  Just not where he's usually resting. 

He does need to cross a few bridges, but we're not anticipating trouble.  He needs to finish weaning and be stable at his home oxygen settings.  Right now, right this very minute, he can't do that.  But with the improvement we've seen, everyone feels that Sunday morning MIGHT be a good goal.  Please keep fingers crossed, prayers said, and good vibes coming.  We've sure appreciated every one of them.  It's what allows him to come home with us, instead of returning to his heavenly home.

Hug Your Loved Ones

Last night was a quiet night in our room, at least from my standpoint.  Aaron played a lot and pulled out his IV.  It's telling that they didn't call for another one immediately.  Standard PICU protocol calls for IVs all the time, just in case.  And in Aaron's case, since he's such a hard stick, it's almost a standard policy even on the floor.  But for now, he has no IV.  We'll see what the team says when they round.

They sent an ear culture to see if they could figure out if he's got infection drainage or just residual from his ear drops.  Funny, I know.  I think ENT requested it.  I'm not sure.  But anyway, his nurse and the resident over him were trying to figure out how to make it happen.  They ended up using a throat swab in his ear and then sending it.  Just like a strep test. 

So overall, it's a very good picture for us right now.  They had thought start trying to wean him off his nitric oxide last night, but he did have a couple hiccups.  He bounced around a little bit, once or twice as high as 80%, but spent most of the night at about 50%.  So again, rounds will be interesting as we figure the course of action for today.

Down the hall from us, it doesn't look very good.  Frankly, when slightly older parents are escorting a crying young mother into the PICU at shift change, it's never a good sign.  And the waiting room as I passed though was crowded with others either looking very somber or crying.  If it's the patient I think it is, he was a vibrant, active young person not very long ago.  This was nowhere on their horizon.  As recent as the parent's PICU lunch last Thursday, his mom was quite hopeful. 

Yesterday, as Rainbow Kids stopped by, we had a discussion about children and death.  That is what they often deal with as the palliative care team.  In the T18/13 world we see a lot of it and she asked how I cope.  I was honest.  All of them make me sad and I pray for their families.  I try to send them a note telling them.  I've learned that it's not necessary to have the perfect thing to say, but "I'm sorry and I'm praying for you" goes a very long ways.  I don't know how they feel and never will because my journey and my feelings are unique and so are theirs.  But I can say I'm sorry.  Some of these kids, and their parents know who they are, they knock the breath out of me.  I've cried many, many tears over them, and I still do when I share their stories.

I always wear a butterfly.  Butterflies are symbolic of lost children.  The caterpillar goes through an almost magical transition to become this beautiful, fleeting creature that leaves so many smiling just when they see one, and then is gone.  I think one of a parent's greatest fears after their child has passed is that he or she will be forgotten.  So I wear a butterfly in honor of those children, as a way of saying, "I won't forget.  You are loved, you are important." 

So take a minute, today, and hug your children and your loved ones.  Let them know they are important.  This life is fleeting and we don't know how many days we have together.  Make the most of your moments.

HUGE Improvements and PICU 24 Hours Part II



Getting CPT and loving it.



Aaron has made HUGE improvements today.  He started the day at 80% FiO2, except when he was 100%.  He's also been getting these newer breathing treatments designed to help loosen the junk in his lungs.  We don't know if it's those treatments, they are making it easy to get a lot out, or Tincture of Time.  But about mid-morning we started turning down his oxygen.  And down, and down.  Most of today he's been between 45% and 50% FiO2.  We even stopped for a little while at 40%.  If he can maintain at 50% or lower though the night, they'll start trying to wean off his nitric oxide tomorrow.  YEA!!!

PICU 24 Hours Part II

April 23, 2012, 4:00 p.m.

He's still sleepy, maybe starting to wake.  Heart rate 117, oxygen sats 95%, FiO2 95% (amount of oxygen he's needing).  He's needing so much oxygen because he's still really upset about his big desat at 3:30, even though he's also still asleep.  I'm trying to go through the emails and calender for the family at home.

 

4:15 p.m.

Okay, he's waking up with LOTS of coughing.  Back to 100% FiO2 and suctioning.  He's back in the high 70's again and not at all impressed.  I can't say I blame him.  I'm not impressed either.  He's pretty miserable.

4:30 p.m.

Time for trach cares and CPT and he's awake and smiling again.  He's a little bit warm, 37.4 axillary (99.3 F) but that also may be because he was so angry.

4:40 p.m.

Oops, RT was called away to transport a patient to the OR.  He'll do CPT when he comes back.  Aaron is awake and playing with his toys, squeaking at them.

5:00 p.m.

He's blowing lots of snot bubbles so I suction him out.  He is NOT happy with me.  I help him calm down and then go to warm some dinner in the microwave  down the hall.  While I'm gone, the RT comes back and he's more than happy to have his CPT.  His 5 p.m. feeding should be in soon, too.  By 5:20 CPT is done and the little monkey is asleep again.

6:00 p.m.

The night attending comes in to check on him and assess.  She suggests adding a breathing treatment of muci-mist and albuterol to see if we can start to mobilize some of the secretions that are stuck in his lungs.  If he can start moving the nasty, thick junk in his lungs, he will feel better and oxygenate better.  And his lungs and heart won't have to work so hard.

7:00 p.m. Shift Change

He desatted just a few minutes ago, again, maybe because of a diaper change.  Back to 100% FiO2.  By the time I get my things together, he's sound asleep and recovered nicely.  He's satting 92% on 85% FiO2

8:00 p.m.

Time for food! (for Aaron)  He's also getting his first assessment from his night nurse.  He's still really sleepy.  It doesn't bother me much, but I do hope he wakes up and is really playful soon.  Besides, he's got these great balloons from his friend P. to play with!

9:30 p.m.

STILL sleeping.  He's getting his CPT and his breathing treatment.  Praying this works.

10:00 p.m.

He's awake!  And ready to party!  He definitely has a fan club around here.  So many have stopped in to see him.  N, who has taken care of him several times just left.  I love that they care so much about him.  This little guy has touched so many.

Spoke too soon.  By 10:15, he's asleep again.

11:00 p.m.

He actually dozed off again right after waking up, but only for about 20 minutes.  Then it was wide awake time!  He loved the balloons P sent to him. This is one of those times I'm a little bit grateful that the trach keeps him quieter.  He's ready to rock-and-roll, but I'm beat.  The PICU is one of the best places there is for sick kids, but it's kinda rough for sleeping soundly. So I'm calling it a night.

2:00 a.m.

A resident is in here checking on him and he (Aaron) seems irritable and uncomfortable.  Guess what.  The fever that has been absent for the past 24 hours has reappeared.  It's 38.5 (101.3 F).  So we'll have ENT come in later.  And he can have Tylenol again.  Poor baby.

4:30 a.m.

I woke to Aaron crying.  And crying.  And crying some more.  He popped his ballard off while his nurse was next door with her other patient.  (It's not what is normally thought of as "next door."  There's a sliding glass door that connects the rooms and can stay open.)  By the time she got in here, he'd dropped to 69% and was NOT HAPPY!  It took quite a while to bring his sats back up and then calm him down.  I went back to bed with an ear out for the vent to try to keep it from happening again.

6:00 a.m.

He's popped his ballard off thee or four more times since 4:30.  I finally got a twill tie (think flat, wide shoelace) to try to tie it on.  It helped but he still managed to get it off a time or two after that.  Each time I was the first to him and had him put back together before the nurse was in.  Sometimes she didn't even realize anything had happened.  We missed R from the previous nights.

He's finally starting to look sleepy.  Here's hoping he sleeps, and that I manage to sleep through shift change in an hour.



The vent and nitric oxidet that would have
to go with us if we needed to leave.
And by "with us" that means, "attached" to him.



So this is our 24 hours in the PICU, and it's fairly typical of what happens in our little room.  The unit is kind of a little community itself.  It bustles with nurses, techs, respiratory techs, residents, medical students and attending physicians (the teachers).  They have IV teams that come and go along with radiology and all the specialists that get called in.  Sometimes the patients have to leave to go to the OR or down to a clinic, but often everything is done right in the patient's room.  I mean, just to move Aaron we would have to take his IV pole, his bed, his ventilator with oxygen attached, and his nitric oxide pump with canisters.  And he doesn't have nearly as much as some kids.  So trying to move them is a challenge at best.  But the staff here, they are awesome.  You get the distinct impression that they think they've got the best jobs in the world.  And I'm so grateful.

 

24 Hours in the PICU

I decided to record what happens over a 24 hour period in the PICU because I think I would be curious, at least if I didn't experience it so often.  Maybe you're not, but it's also a record of Aaron's life.  And I so very much feel the need to document it.  This was 24 hours starting at 6 a.m. on April 23rd, and it's a fairly typical day as far as those go. 

 

6:00 a.m.

I wake to whispers and at least two people (turns out to be three) in the room.  Ask how he's doing and it turns out he's lost his IV, the one that was just placed yesterday.  It clotted off in spite of the slow fluids we had going to prevent that.  Usually, he keeps his IVs for a long time, but I guess not this one.  He has to have another because he's in the PICU and they may need access quickly.  And it's just good sense to get one anyway because he's a really hard stick and it's just better to be safe than sorry.

Five pokes and two IV teams later we have another scalp IV.  It's the second in his head for this stay with three in his feet in between.  It takes almost until the 7:00 a.m. shift change to get it in.  I've lost count of the total number of pokes he's had, but I know we've tried multiple times for feet and hands and once in the scalp that didn't pan out.

 

7:00 a.m.

Shift change.  We've had the same nurse at night the past few nights but now she's off for a few days.  R has been awesome with him and I've really enjoyed getting to know her.  She said Aaron had a really good night.  They played, he laughed.  She gave him a bath around 4:00 a.m. and then he fell asleep -- right about the time the IV decided to quit.  He had started getting uncomfortable earlier, around midnight, so rather than wait for the fever, he got Tylenol and Motrin to head it off.

Aaron was finally asleep as I left to get my shower during the shift change.  Poor baby is such a hard stick.  But he did keep his sats up during the whole sad experience.  That's a good sign.

 

8:00 a.m.

I came back in and Aaron is trying to sleep through his morning assessment.  He just got all his morning meds and is starting home bolus feeds again.  His last one was last Tuesday afternoon just before we called the ambulance.  He was NPO (literally "nothing by mouth" but in his case it's g-tube) from Tuesday through Friday morning.  He's been on continuous, 24 hour slow feeds since then.  His fluid output has been quite low, even with Lasix.

The respiratory therapist (RT) comes in to check him, listen, and do therapy.  He sounds a little wheezy so he gave him six puffs of albuterol and started CPT (Chest Physio Therapy) with a pneumatic percussor.  Just before he arrived, Aaron desatted to the mid 80's.  I checked his cuff, inflated it to 2 cc of air and listened prior to suctioning.  Also, I cheated and gave him some O2 suction (a burst of oxygen) on the vent.  I'm really not supposed to touch the vent.  The RT walked in as I was finishing listening so I didn't suction but turned it over to him.  Aaron loves CPT.  He acts like he's enjoying a spa treatment.

 

8:30 a.m. Rounds

Everyone went over all of Aaron's meds, treatments, feeds, and studies.  Repeat labs came back positive for rhinovirus again (surprise!).  Also he's holding onto a lot of fluids so we're scheduling Lasix.  If his fevers continue, they'll get ENT involved to check his ears and sooner rather than later.  He'll stay on nitric oxide until he's using less than 50% FiO2 (oxygen that's bled into the ventilator -- just measured in percentages instead of liters like on our home vent -- about 5+ liters).  Then weaning off the nitric is a two day process.

 

9:00 a.m.

Aaron's sleeping peacefully and I'm reading through people's comments on Facebook and the blog about him.  It is so comforting and strengthening to know so many are praying for us.  He's having a little trouble keeping those sats up right now and his heart rate is climbing a bit.  Wonder if a fever is coming on.

 

10:00 a.m.

Sats are starting to dip but no fever yet.  It may be in part that he's not breathing as deeply when asleep.  And he is OUT!  Increase FiO2 from 65 % to 70%.

 

11:00 a.m.

Sats are still 88-90% -- still sleeping.  Rainbow Kids team just stopped by to see if we needed anything.  They'll pray for him, too.  It was a nice visit.  It's also time for another feeding. He seems to like having a full tummy.  I wonder why.  We're also going to hold off on Tylenol and Motrin unless he spikes a high fever because we're trying to see if he's really trying to fight off some bacteria.  His trach aspirate (think throat culture, like a strep test, but in the trach) is starting to grow out some bugs.  But we won't know what they are or how much for a few days.  And we know he's been colonized with a few different ones for quite a while.  We're all thinking that his current lower sats are because he's sleeping deeply and not breathing as deep.

 

11:40 a.m. a Code on the unit

Aaron still sleeps, but tones have sounded in the unit.  They're different in here than in the rest of the hospital.  It's a gentle ding-ding tone in here.  But when they sound, everyone stops.  It's the code alarm.  Someone's coding, lungs stopped, heart stopped, or dangerously close to stopping.  And I've learned that medical personnel geneally don't run.  Paramedics, doctors, nurses -- they move quickly and with a purpose, but they don't run.  Except for when those tones sound.  Then they run.  Everyone's down at the other end of the unit now.  I pray the child will be okay.  See, when they're expecting, planning for a child to pass no tones sound.  No code is called.  A butterfly is placed on the door.

The PICU is not a quiet unit.  It's busy, crowded.  There's a lot of talking, laughing, joking.  But it gets really quiet in the aftermath of a code.  Almost as if everyone not actively involved is holding their breath, praying.

 

 

Noon

The noise is back, some laughter, almost a nervous feel to it.  but I do see some smiles.  I hope that means the immediate danger is over.  Aaron is now on 80% FiO2.  Still sleeping, but at the moment he's at 93-94% oxygen saturation.  That's a pretty good spot for him.

 

1:00 p.m.

I stepped out to grab lunch and update Aaron's blog.  The Parent Resource Center is such a help.

 

1:30 p.m.

Came back after lunch to find some cute balloons and a sweet note with a magazine from another mom who's been (and still is!) in the trenches.  Her little hero is a few years older than Aaron and has some similar challenges with his airway.  She "gets it," she really does.  And it will be so fun for Aaron to play with the balloons when he wakes up.  What a fun surprise for both of us.

He's still sleeping, still on 80% FiO2.  As I stepped out, the RT was here again doing CPT and he was just hanging out, totally relaxed.  While I was gone, Wound Care came by.  He still has a nasty sore by his g-tube.  So we'll try some more ointment for a day or two and if it doesn't improve, move to a higher level of care with it.

 

2:00 p.m.

I decided to lie down for a nap since Aaron is sleeping, too.  Twenty minutes later, he stretches and knocks off his ballard.  Oops.

 

3:00 p.m.

Aaron knocks his circuit open again in a different place with strong coughing.  I didn't hear the wind, so I didn't move that fast and the nurse covering for his nurse (she was at lunch) wasn't right bedside either.  He desatted to the upper 70's and was MAD!  FiO2 to 100 %, blow-by oxygen and a little suctioning and he eventually calmed down.  And went back to sleep.  I got to talk to the nurse about T18, survival rates, and how hospitals and doctors can and DO influence these.

 

Tuesday, April 24

I'll finish this tomorrow.  I didn't realize how long this is going on.  We're seeing some improvement today.  They've put him on some breathing treatments that are pulling a lot of junk out of him.  Hopefully, he starts processing the oxygen better.

He's having a TON of fun playing with those balloons.  And I think we might be seeing a tiny bit more improvement.  Tincture of time seems to be what he needs.  He's now on day nine of his virus...

Playing with the balloons

his friend P. sent him.

Monday Morning

Getting CPT.  He thinks it's a spa treatment.

It's Monday.  One week ago today we saw the first real symptoms of his cold.  You know, the runny nose, sad eyes.  Although I felt like he might be a little "off" on Sunday.  But I've felt that way before and it was nothing.  So I've told him that his 7-10 days of virus are almost over.  It's time to get better, and fast. 

He is doing a bit better.  He played all night with his nurse last night, so he's sleeping pretty soundly today.  He did lose his IV access early this morning, so we're now on IV # 5.  Usually he keeps them a whole lot longer but for some reason, this one clotted off after less than 24 hours.  And five pokes before one was finally a good one.  Not fun at all. 

If his fevers continue, they'll get ENT involved to try to see if he's still struggling with an ear infection in spite of the antibiotics he was given for them.  But for right now, we're just holding tight and hoping for some small improvement. 

Yesterday, a sweet 8 year old girl, Emily, was buried.  She had a mitochondrial disorder, but also the biggest, sweetest smile.  I loved the pictures her mom would share.  Emily loved Hello, Kitty and the color pink.  Her mom asked for her friends to wear pink in honor of Emily.  Because he's in PICU, Aaron doesn't wear any clothes.  But we found some pink coban and made wrist wraps for him.  Fly high, sweet princess.  You are missed.

Some Improvement?

I think we might finally be seeing some improvement.  At least he's a whole lot happier.  Playing, smiling, disconnecting monitors, you know, acting normal.  He is running fevers pretty consistently, which is new over the last 24+ hours, so they're repeating more tests.  He's also still on the nitric oxide to help open the blood vessels to his lungs.  We're really praying that this virus doesn't do lasting damage to them. 

Overall, it's a positive trend we think we're seeing, but we won't be going home anytime soon.  He's still on 55% to 65% oxygen bled in along with the nitric oxide, and that's when he's happy.  When he's feverish or upset, he needs more.  He needs to be consistently below 50% before we can begin weaning the nitric oxide down and that happensover a couple of days.  Then we'll have to return to our home vent for a period of time, probably a good 24 hours, before we can think about leaving.  So it will still be a while. 

But he's being a real trooper.  He's on his 4th IV, and I've lost count of the pokes it's taken to get those.  It's actually interesting.  I can tell when they've gotten one because those are the pokes that hurt.  The other ones, the ones that don't work, generally don't bother him too much. 

Yesterday, I was reading a novel about a heart transplant.  The main character had been born with a congenital defect, probably Hypoplastic Left Heart.  But one of the most interesting passages to me was the description her mother gave of her own role in her daughter's life:

"But ever since the first night Vida was born, I've been told to prepare myself to lose her.  But when you're a mother, there's just this part of you that can't accept that.  Even when you know there's nothing you can do.  You just can't let it be that way.  You can't.  So you put every ounce of energy you have into keeping your child alive, and then after a while you start to feel that it really is you keeping her alive.  You know.  With that sheer force of your will."

This really spoke to me.  You begin to feel that if you can just work hard enough, run fast enough, learn enough, that everything will work out.  On Friday, a mom told me that she didn't know how moms like me go on knowing that each day our babies could die.  I've been asked similar things in the past on occasion. 

I think the answer is kind of two-fold.  The first and basic answer is, we forget.  We forget that they're not "supposed" to live.  We forget that they really are so fragile.  I think it's a defense mechanism that God grants to us so that we can enjoy our little ones.  And whatever we're doing, it becomes our normal.  Honestly, we don't even see Aaron's tubes and wires any more.  HE obviously does, because he thinks they're toys.  But that's how he sees them: toys that are always within reach.

The second answer has to be that I know this life is not all there is.  Aaron has already done what he needs to do in this life, gain a body.  The rest of his life is for us.  And I plead, I really do, for Heavenly Father to grant us more time to enjoy him.  And on more than one occasion, I've gotten the impression that his life has been spared in response to those prayers. Not spared for him, but for me.  Please don't think I'm saying that those he takes home are any less precious to Him, or that their parents are.  I just think that this may be one of those personal blessings in my own life.  And I am so grateful.

And, behold, I am with thee, and will keep thee in all places whither thou goest, and will bring thee again into this land; for I will not leave thee, until I have done that which I have spoken to thee of.                                                                                            Genesis 28:15                                  

Thank Goodness for Wiggle Room

Poor Sick Baby

Yesterday turned out to be a pretty good day.  He was happy and playful.  When we came in on Tuesday, he had a scalp IV placed (easiest, and sometimes only place it can be put on him).  Usually, we have to put a restraint on the arm closest to the IV because he wants to pull and play with it.  Until yesterday, that wasn't a problem.  But he was finally feeling well enough to be playful and explore some of the many tubes and wires around him. 

We also gained some wiggle room yesterday, and then had to use it this morning.  Nitric oxide is a very thin gas that can be used to help pulmonary hypertension.  It was started yesterday afternoon, and we were able to bring his oxygen usage down to between 55 and 60%, a great start.  And this morning, we were very grateful.

He slept pretty well last night, but was a little warm at first.  Then about 6:00 this morning, he popped a pretty good fever:  38.5 C (101.3).  He also needed more oxygen, a lot more.  We were back on 100%, WITH the nitric oxide, and barely able to maintain 90%.  Yeah, he's sick, REALLY sick.

Ventilator and Nitric Oxide that keep him breathing.

Tylenol and some agressive breathing therapy managed to help out some, and now he's on 80% again.  So again, we have a little room for trouble, but just a little bit.

They're still thinking this is all viral.  Labs have been drawn again, but they don't point to anything bacterial.  So it's watch and wait, support and pray.  His doctor is comfortable letting him direct things and keeping him on the nitric oxide for the time being, but he did say that if there isn't any improvement within about five days, he's not sure what is next. 

Two IVs, one in each foot, ouchie...

So he got poked a few more times today, but he's asleep right now.  We really have no idea how long this stay is going to be.  It does seem a lot like one step forward, one step back and a slide to the side.  I never was very good at line dances...

Preserve me, O God: for in thee do I put my trust.                                            Psalms 16:1

Reality Is Just No Fun

I think there's a reason why fantasy and other fictions are such popular genres.  As my daughter is fond of saying, "The difference between fiction and reality is that fiction has to make sense."  This morning, reality was thrust at me again.  I prefer my fantasies.  The fantasies that include Aaron getting bigger and stronger, going to school, laughing with not only his brothers and sisters, but even nieces and nephews.  This morning I was reminded that all is not necessarily as I would like to see it.

See, this is a teaching hospital, and nothing was said that I hadn't already known, but to have it brought out into the open was, again, a little more eye-opening that I really wanted it to be.  The attending was asking leading questions trying to help the residents figure out why Aaron's oxygen needs were so high.  He asked me a couple times during the discussion if I was already aware of this, or if it was news I'd heard before.  Yes, it was. 

So here's the reality I have to face, at least for the time being, until I can bury my head again.  Yes, Aaron's lungs are junky, and he's having trouble.  But there are a lot of kids in the PICU with junky lungs who aren't requiring super-high amounts of oxygen.  Aaron's pulmonary hypertension shows many signs of not being under control.  And pulmonary hypertension is not a good thing, not for the lungs, not for the heart.  And funny, those two organs are kind of pretty important to life.  Uncontrolled, it will cause right-sided heart failure, not maybe, will. 

So he's going to have an echo and then they'll try nitrous oxide to help open his pulmonary arteries.  And we'll really hope that this is a side effect of his cold and that we can find a way to control it.  Because there is no cure for pulmonary hypertension, only ways to help control it. 

On the good side, today he's a happy boy.  He's active and smiling and playing with his toys for the first time since we got here.  And he slept pretty good last night, too.  I just wish his support requirements would go down.

Don't Touch the Baby!!

Yes, we're still in PICU, and yes, he's still really strugling. The good news is that last night about ten minutes before 5:00, we saw a smile,a few of them in fact. The bad news is we hadn't seen any since before we'd left home more than 24 hours earlier, and they've been in really short supply today. Yeah, he's still that sick.

We do have a diagnosis though. It's rhinovirus, the common cold. You know the one that makes your nose run and your lungs cough and you basically feel really miserable and tell people you feel like you're dying. Well the difference here is that it really can kill him. Right now he's still on a TON of oxygen, like occasionally we can get away with 75%, but mostly it's still between 90 and 100%. And he's getting breathing treatments every few hours to help his lungs stay open. And he's on the hospital vent instead of ours because it's just that much more sophisticated.

So where's this going? You know the cute sign that hangs on his stroller that says, "Don't Touch"? That's exactly what it means. And it really does mean everyone. See, I know you're not sick, and you haven't been for a while, but was the person who sat where you did before you? Was there someone with a nasty cough who held that book or opened the door before you? At our house, and away, we use a lot of sanitizer. Did you before you reached out to him? And he's also gotten used to our germs. He doesn't know yours yet.

He loves to get out of the house.  He loves to see people.  But the fact is that if people can't keep from touching him, he has to stay home.  We have to try to keep him safe.

So when the sign says "Please don't touch" that's exactly what it means. Don't touch the baby. You really could break him, and all the PICU nurses and doctors may not be able to fix him again.

Good News But a Rough Night

Aaron had a rough night last night. This baby Never cries but last night he sure did. And it was audible. And it went on for hours and he just couldn't be comforted. He was just in so much pain. But the good news is that his 3am xray showed that the pneumothorax is resolving and his blood gas test was also really good. So today is a watch and wait day. He's still got a lot of drainage coming out of his stomach tube, and he's got all those normal cold symptoms we all see. And, like last November, he's using a LOT of oxygen. Unlike November, he is certainly NOT the happiest camper in the PICU. Right now he's sleeping quietly, which may be the best medicine he can get. I think I may try to sleep, too. Sorry there are no pictures. I haven't figured out if there's a way to connect my camera and kindle. Please pray that he will start using oxygen more effectively. When he's on 100%, we don't have any wiggle room.

Pneumothorax

It was not an easy, at home, fix.  Aaron has a pneumthorax, or air between his chest wall and his lung.  You know, outside the lung instead of inside where it belongs.  Fortunately for him, it's a small to moderate sized one and he's in the PICU where they are watching closely.  Ideally, it will resolve on its own within a few days or so.  If it doesn't, or it gets bigger, they'll decompress it. 

It seemed like for a little while he might hold his own with help from albuterol.  But then his oxygen use shot up again.  And again, we ended up having to call an ambulance to get here.  He was an angel on the way up, slept pretty much the whole way.  But as soon as we got here, the fun began.  As we were transferring from the ambulance gurney to the hospital one, he began to struggle more.  Sats dropped further, oxygen needs increased.  Then we had coughing, lots of coughing, but it was pretty ineffective.  Except that after a little bit, he started bringing up blood.  And then he popped a fever.  And he didn't want an IV, as in, his tiny veins did not want to give up anything at all.  So here we were, fever of about 101 or so (38.7 C, I think that's about 101), lots of coughing, some blood, and on ten liters of oxygen (as opposed to our 1-2 liters earlier this week) and still struggling to maintain 90% saturation rate.  Yeah, it was a good thing we were already here.  He's already had his chopper ride.  I told him he doesn't get another.

So we're back again.  It will be much harder to update than usual because I don't have the computer with me.  Usually I bring it so I can work while I'm here.  But I'm still out because of my shoulder and it's needed much more at home for homework and other things.  So I'll try to get an update once or twice a day, but I have to leave to go to the parent center to do so. 

Please keep our little guy in your prayers.  Right now he seems like he's in a lot of pain.  It just breaks my heart to see that silent cry.

Getting Sick Again

Aaron's getting sick again.  I hate the way it raises my heartrate just when he catches a cold, or starts having trouble with his feeds.  The last few times he's done this, he's tolerated it well enough to stay at home.  But still, I worry and start planning for the "what ifs".

He has two ear infections, much more gas in his tummy, slightly higher oxygen needs.  I don't think the frequency of his alarms has changed, but his activity level has.  Normally, when he's playing around, his movements cause the vent to think there might be something wrong.  Or he's wiggling too much for the oxygen sensor to pick up.  Now, he's sleepy or sleeping, and the vent alarms, or his oxygen dips.

Oh, and he's got all those fun secretions known as snot coming out of his nose, too.  When he's awake, he almost thinks it's funny to blow those bubbles, at least until I come after him with suction.  Yeah, not too fond of that.  At least he can move to try to get away.  I'm trying to be grateful for the small things.

Yesterday, the Wolf/Bear den combined for a field trip to the fire station here in Alpine.  Andrew asked the two guys doing the tour if either of them had ever helped save Aaron Peterson's life.  Both of them said they'd been here, on more than one occasion.  I'm so grateful for their help.  We have such wonderful medical personnel, all the way from the paramedics to the staff at PCMC.  But I wish so badly that we only knew them socially.

I love my bug with all my heart, but sometimes I long for the days when my baby would catch a cold and I'd try to figure out if they needed to be seen about a possible ear infection, or maybe we just needed to keep trying to chase them down to wipe their nose before they used a sleeve.  Now, I can see myself if there's an ear infection (he gets a bloody discharge) and treat it with the drops we always have on hand.  No, I don't miss hauling into the pediatrician's office.  I just miss that that was my biggest worry.

As for me, the prayers for my shoulder are certainly helping, as are all the things my family has pitched in to help with.  It's still painful, and I still can't work, but most of the time it's more of a dull ache.  And while I hurt when I wake up, it doesn't keep me from sleeping anymore.  That is HUGE.  We still don't have any answers yet as to why or how long it will go on.  Sometimes things move very slowly...

Guess What? Aaron is a Baby!

Chillin' on my way to
PCMC for a check-up.

I know babies and small children like to explore with their fingers.  And since their own body has plenty of little holes (ears, nose, mouth, etc) those fingers like to poke in there.  Well, I guess I never really thought about his trach stoma (the hole in his throat, you know) being one of those little holes.  But on Tuesday, when I was doing his twice monthly trach change, he decided to check it out.  Any idea how hard it is to put a trach in a stoma that a little someone is trying to put two index fingers in?  I didn't need two more hands to do his trach change as much as I needed two fewer!  But yeah, we were laughing about it.  You don't realize how grateful you are for those little, tiny, simple things, until you discover that you never expected to experience them.

Yesterday, Aaron went to trach/vent clinic for a check-up.  He's looking great!  He's 10.85 kg, or 23 lbs 14 oz.  He's essentially the same size as all his siblings at this age.  AND he's been tentatively cleared to travel this summer to see family.  All his doctors kind of shrugged and said, "I don't see why not."  YEA!!!  Now, as far as getting off the vent, well, that one remains a mystery.  Kinda up to him and so far, he's not talking.

Waving

Aaron has reached a new milestone, but  unfortunately, he doesn't want to perform for the camera.  Last week, William was waving at him, opening and closing his fingers.  Aaron watched for a little while, and then started doing the same thing with his own hand.  This is doubly exciting as most kids with T18 struggle to open their hands.  We've been working on helping him open his since the day he was born.  He repeated it again on Sunday.  But since then, he kind of just give me his cute grin that says, "That's funny, Mom.  Keep doing it."  So I'll just have to keep trying to catch him at it.

Playing soccer

He also has a lot of fun kicking his soccer ball around the bottom of the crib.  I wonder how many other 22 month old kids are getting in all their touches on the ball on a daily basis.  Look out Real Salt Lake .  We may have your next superstar.

Avery Lynn and her bucket list

I recently found a new blog.  In fact, the blog itself is new.  Little five-month-old Avery Lynn was diagnosed last week with Spinal Muscular Atrophy, a degenerative disease that will probably take her life before she is 18 months old.

She has a bucket list of things she wants to accomplish before she goes.  It's got a lot of the things you might expect on there, such as learn to play an instrument, celebrate a birthday, meet Santa Claus, be on TV.

But then there are some others that you might not think of.  Mow the lawn, play barbies with her cousin, take out the trash with Daddy, get an allowance, hide from Mommy and Daddy when they come home from work.  Play in the mud, talk to Mommy and Daddy.  Throw a tantrum in the middle of a department store.

These ones, they're the ones that get me.  What kind of miracles do we get to participate in each day?  It's the little ones that grab you.  It's the little things we take for granted.  The smiles, the hugs, the silly times and the frustrating times.  That's what makes a life worth living.  I remember the many, many times I wished my toddler would be a bit quieter so I didn't have to take him or her out of a church meeting.  Do you have any idea what I would give to have an active, rambunctious, LOUD 22-month-old to take out now?  So celebrate those moments.  Those ordinary, wonderful, life-affirming moments. And hug your loved ones.

Happy 22 months tomorrow, little man.  You teach us so much.

A Happy, Blessed Easter

Easter was, as always, a wonderful reminder of our Savior's love.  We were blessed to have all the kids home for Easter.  Mary came home on Saturday and the boys got back from the Ballroom Tour early Sunday morning.

I have not been doing well with my arm.  In fact, instead of getting better, it's been worse.  The doctor changed some medications which helps with the pain, but makes me feel pretty sick.  Also, Aaron had been battling diarrhea since last Tuesday.  Fortunately for him, he was able to keep his fluids balanced, but we were changing LOTS of diapers (not to mention clothes and bed sheets).  So Sunday morning, things didn't look real great for all of us to be at church.  But along came another one (or two) of those small miracles and by late morning, I felt like I might be able to make it through services, and Aaron slowed down as well.  So off we went.

Two comments in particular hit me on Sunday.  The first was, "In the depth of winter, through Christ, we find an invincible summer."  I love summer, full of life and light.  And that so perfectly describes our hope in Christ.  The second was, "It will all be okay in the end.  If it's not okay, it's not the end."  I needed that, too.  Because right now, it's not okay.  Sure, we are blessed immeasurably.  But this is not the end that I'm dreaming of.  As I watched a video about Easter with Michael, and we spoke of the Atonement and the Resurrection, we talked about how someday Aaron will be made whole.  Someday he will run and play and kick a soccer ball and play catch.  He'll laugh and enjoy ice cream.  And that will be a beautiful day.

But for now, we keep on plugging along.  Right now, I'm doing the one-handed typing, because I can't move my right shoulder, even enough to be able to type, without excruciating pain.  And if Aaron's equipment fails, he doesn't breathe.  And yeah, sometimes kids squabble.  Not mine, of course, they're perfect.  But I have heard that some families deal with that.  (Here's hoping mine don't read this.)

My very favorite scripture is one I found during one of Aaron's hospital stays.  I remember it was a Sunday, and I think it was a Sunday that we'd been hoping would find us on our way home.  Instead, if I remember right, we were contemplating a trip back downstairs to PICU.  But either way, I know we weren't leaving yet, and had no idea when we would be.  This scripture spoke directly to my heart.  Abinadi is teaching about the Plan of Redemption and says:

7  And if Christ had not risen from the dead, or have broken the bands of death that the grave should have no victory, and that death should have no sting, there could have been no resurrection.
8  But there is a resurrection, therefore the grave hath no victory, and the sting of death is swallowed up in Christ.
9  He is the light and the life of the world; yea, a light that is endless, that can ever be darkened, yea, and also a life which is endless, that there can be no more death.

Mosiah 16: 7-9   

After all, the beauty of Easter lies in the fact that the tomb was empty....

Fun Easter Pictures

Happy Easter

A Challenge, or Two?

Hi all:

This will of necessity be short.  I have to stop before my shoulder seizes up on me again, but I wanted to let people know where we are:  at home!  Yea!  Still at home.  It looks like maybe we've weathered a General Conference without going in.  No, General Conference itself doesn't have anything to do with Aaron being sick.  It just seems that each time it rolls around we're either already in, or heading in.  Not this time!

Our big challenge right now is my challenge.  I tripped mid-February over one of his cords and injured my shoulder, my right shoulder.  It would start to feel better and then I would stress it again.  I put off going in, hoping it would fix itself.  No such luck.  A week ago it hurt so bad that I finally took myself to an after-hours clinic.  The doctor diagnosed tendonitis and sent me for physical therapy and medication.  Between the two, the weekend was actually almost comfortable.

But then on Monday, I finally got around to lowering several sets of ears (cutting boys' hair).  Yeah, probably not a good thing.  Working has also stressed the muscle and tendon.  I had been on half-loads at work, but by Tuesday, even that was too much.  When I tried to go to physical therapy, I couldn't even reach forward to put the key in the ignition with my right arm.  So now I've had to take time off work as well.

Anyway, it is improving, slowly.  I'm hoping that by next week I can be back on half-work and then full-work by the following week.

The second challenge is that Aaron may be starting to brew something.  He's been so cheerful and happy, and working so hard with his therapies.  But today he's not done as well.  He's been more tired, more junky sounding, and had a LOT of tummy bubbles.  And oh yeah, we've had "bucket patrol" since Saturday in a couple of the kids' rooms.  So here's hoping that it's just a tiny bump, and that he gets over it quickly.  Because not only do I NOT want to visit his "vacation home" north of here, I really don't want to try to do it one-armed.  So, please, keep us in your prayers.  I know you already do.

By the way, I think I enjoyed General Conference more than I ever have before.  I started a blog post on it and there are lots of thoughts to follow.  I just can't type very long at all before it hurts too much to go on.

What to expect when expecting a child with Trisomy

Aaron and Michael on Trisomy 18 Awareness Day 2011
3/18/2011

Here is another video, done by another amazing mom.  Aaron appears several times through here, including one precious shot of his hands holding our wedding rings.

This is in similar format to the popular What to Expect When You're Expecting book.  As parents, when we're given the diagnosis of Trisomy 18 or Trisomy 13, we are told not to expect much of anything.  In fact, what we should "expect" is to have our baby's funeral planned out, not their homecoming.  My doctor could not have been more compassionate or understanding, but she also said there was very little hope.  What she DID say, many times over as time went on was, "Aaron is writing his own book, and we're so glad he is."  No, he hasn't followed the "textbook," but in reality, which one among us does?   The "average person" is not really average at all.  There will always be many places that they excel ahead of AND fall behind their peers.

Within a couple weeks of our diagnosis, I made a rule for myself.  I simply would not read the story of anyone whose baby had not lived at least four months.  I know there was much I could have learned from others, but I wasn't in a mindset where I was able to learn.  And when you're told that chances are your baby won't take a breath, four months seems like a very long time!  I did as much research as I could, but still felt so along on this journey.  I will forever and ever be grateful for those others who have walked and are still walking this path with me, for their love and support.  And I hope I can offer some of mine to others along the way.

And I guess I should admit, I have a special bias toward the picture she chose as the thumbprint for the video.  One of my one or two thousand favorites...

We Are The World Of Trisomy 13 & 18

This is a beautiful video put together by a friend of mine. These faces are
so beautiful. So many I recognize in here. So many prayers said for them
and by their parents for Aaron. So much love and support. We may not
have ever met in person, but love and prayer hold us together across the
miles.