Happy Halloween!

He wasn't quite sure what to think
of this.  It was "what is this you're
doing to me?"  And while the costume
was okay, he wasn't sure about
the hood at all.  Silly bug.

Last night was a better night.  He only had two desats and came back easily.  MUCH better than the previous 24 hours where we were constantly rescuing him over and over.  Today’s plan had us decreasing the tidal volume on the ventilator.  They’re wondering with his lungs hyperextended if they’re too tight to exchange the oxygen well.  It doesn’t seem to have made a big difference, but it might have made a small one.  Also, they’ve put him on two different antibiotics to try to kick this pseudomonas.  It’s a particularly sticky bacteria, so we’re using an inhaled drug to break up the DNA in the pseudomonas so it’s easier to suction out.  He gets it twice a day and the RT said it would take probably two days to really see a difference. 

 
We also tried lying him down on his tummy.  That was kind of tricky, and I should have taken a picture, but once we got him there, they were hoping he’d tolerate it for at least 30 minutes.  Not only did he tolerate it, he loved it.  He slept like that for about six hours!  Again, it didn’t seem to do much fto improve his oxygenation, but at least he got some really good sleep.  That has to count for something. 

 So there we are.  He’s looking better, happier, but still struggling.  At least it’s not quite as scary.  But I just don’t understand why he’s needing so much oxygen, and neither do the doctors.

 I love the way they cater to the whole child here (and the parent, too).  It’s Halloween.  The kid’s holiday.  Child Life stopped by to say that if we don’t  have a costume, they have them upstairs.  And they’ll be by later to take pictures.  I went up and got the cutest monkey costume.  I think it’s appropriate.  He was asleep when I got back, so we’ll put it on later.  I needed this.

Sunday Strength

Church today was wonderful, as always.  I don't think I'll ever get to the point where I take it for granted up here.  At least I hope not.  There  is always something that really touches me.  Today, it was the opening and the closing hymn.  The opening hymn was "I Believe in Christ."  I remembered singing that to Aaron several weeks ago, and his spirit singing it back to me.  He does believe in Christ, and he knows that it is through the miracle of the atonement that one day, he will be healed and whole in the royal courts on high. 

The closing hymn was a sweet song from the Children's Song Book, "He Sent His Son."  Last March, after we knew but before we told others about Aaron's challenges, I was asked to teach it to the primary children.  It's a simple hymn about how God has taught us.  He taught love and tenderness by sending his son as a little baby.  He taught us the pathway we should go by having Christ walk with men on earth.  And He taught sacrifice and death by sending His only begotten son to die for us and then rise and live again.  As I talked to the children about the song, we spoke of how precious and tender a little baby is.  Then we talked about what a wonderful example and teacher someone can be.  Then as we spoke of the third part, I asked if they thought it must have been hard for Heavenly Father to watch his beloved Son die.  It must have, but He did, and Christ allowed it because of Their great love for each of us.  And what do they ask of us?  To have faith, hope, and live like Jesus taught.  Not always easy, but what we must strive for.  And the miracle is that His grace will make up the difference between what we can do and what justice requires. 

  

Last week, another mom who has walked this road with her little one sent me this video.  It's been a rough enough week that I didn't feel I could watch it until today.  I was right that it would be hard, but oh so touching.  A reminder that He always does carry me, not only me, but Aaron, and not only us, but the rest of our family as well.  Because although so worth it, the road is hard and the only way we can make it is through His strength.  Please watch this.  I hope it will give you hope and help in your trials, whatever they may be. 

Sunday Morning in the PICU

Aaron's room in PICU
His pumpkin friend is
over on top of the vent,
peaking over the edge.

Sunday, October 30, 2011

Much going on and I’m still trying to organize the thoughts so they are somewhat coherent. 

First of all, he had a quiet night as far as sleep goes, but when he’d go to sleep, his sats would drop after a little while.  So up with the oxygen and out came the bag and they would bag/suction him in an effort to loosen any plugs and move them out.  It happened at least three different times that I know of (can you tell I didn’t get a whole lot of sleep?).  Then this morning, he decided to go all out with it and went into the 70’s.  Yuck.  In addition to bagging, the RT decided to go after his nose.  Suffice it to say that what came out of there was double-yuck.  And his sats improved.  So I guess, even though he doesn’t use his nose to breathe, really, he doesn’t at all, it must influence it.  So we got him back and within the hour we had weaned back down to 85% oxygen through the vent instead of 100%.  (By the way, what we breath, normal room air, is about 21% oxygen.)  So that’s one thing.

The sign outside our door,
warning any staff that
they need to take precautions so
they don't take any nasties back out.

Next on the list is that his trach aspirate, the test where they pulled cells from the lungs through the trach, is starting to grow out.  And it’s got our good ol’ friend, pseudomonas, a lot of it.  He’s colonized with it, meaning he’ll always have some come back, but this time it’s way more than it should have.  Apparently, they’ve been having a real party down there and have gotten out of control.  So they’re putting him on another antibiotic, an even stronger one, just to make sure they get it until the lab can figure out exactly what this strain is sensitive to.  So we’re not sure it’s pneumonia, although it may be, but it’s at least a tracheitis, or bacterial infection in his trachea.  (I think Word needs to add a medical dictionary.  It doesn’t seem to recognize the words I use way too often now.)

Getting his echo.

Third, we’re going to get an echo.  He’s just not budging on his oxygen, and he’s on so much.  They just want to make sure his pulmonary hypertension is not getting worse, although I’m told that it will be higher just because he’s so sick.

Fourth, but probably not until tomorrow, they’re going to talk to neurosurgery about his MRI ten days ago.  It’s just different enough, and we’re a captive audience, so we’re going to touch base with them.

Jammie pants.  Hoping they make
the transition from casts a bit easier.

His casts came off yesterday, and he’s not so sure about that.  His little legs are very sensitive.  They haven’t been touched, except by casting material, for 12 weeks.  It really bothers him to have them handled.  Right now he has little jammie pants on in an effort to minimize the stimulation, or at least try to provide a buffer there.  I’m also going to contact Shriners tomorrow and see if I can pick up his braces.  We’ll have to go back for final fittings before going home, but at least he can have something to protect all this work until we’re out of here.  Which, unfortunately, doesn’t look like it’s going to be anytime soon.

Church was wonderful.   As was a special video a friend sent me by e-mail a few days ago.  I wasn’t up to seeing it until today.  I’ll write more about those later.  Perhaps after a nap…

Stable, and No Casts



A new friend.

Aaron has been stable all day, thank goodness.  He's been getting a lot of support from the hospital vent and has not come down on his oxygen, but otherwise it's been a good day.  His x-ray from this morning showed his upper right lobe opening up.  This saved him a trip to the ER to have it sucked out with a bronchoscope. 

Getting ready for cast removal.

We're starting to run out of IV sites.  He keeps sweating them out of his head, which is too bad.  It's my favorite place.  Mostly because it goes in so smoothly.  He's such a hard stick in his hands and feet, that they really have to poke and prod and dig to get one in there.  Besides, if it's in his head, he can still play with his hands.  So the casts came off today.  He's not sure what to think about it.  It's been three months since anything but casting material touched his skin on his legs, and I think he's finding it a bit unnerving.  But I'm sure he'll get used to it.

After his casts came off.  We're going
to have to work on those leg muscles.

When I was home yesterday, I bought him a little friend.  When I showed him the pumpkin this morning, he was a bit concerned.  He looked at it as if he thought he might need to be afraid.  After studying it for a while, I took his hand and rubbed the pumpkin with it.  That's all it took.  He broke out in big smiles!  A new friend!

Anyway, we're enjoying that he's stable.  The only time he dropped down much was when he disconnected the vent and it took a couple minutes to discover it.  (The hospital vent doesn't scream as loud as ours does, and it goes off for a lot more reasons.)  Imagine that, no breath, no oxygen, dropping sat rates.  Who'd have thunk it?  Thank you all for your prayers.  Please keep them coming.  He's not well yet.

Please Pray

Please spare a minute and pray for Aaron. He's been in the hospital since last Sunday fighting a virus. We don't seem to be making any headway on it. I went home this afternoon for a few hours, and while I was gone, the hospital called. He dropped his sats into the 80's and wouldn't come back up even with 10 liters of oxygen bled into the vent. They had to bag him for 30 minutes to bring him back up. This earned him a quick trip back to the PICU.

When we got back tonight, he was back on the hospital vent and looking pretty good. But I think we've lost all the ground we gained a few days ago. Please pray that he can kick this. We need our little bug to get better.

Not Much Change and a Letter from a Brother

We seem to be kind of stuck. He's still on 7 liters of oxygen and really junky. I'm trying to bank on the 7-day virus thing. He went bad Saturday night, so we're almost there. But they are looking into the possibility of it turning into a secondary bacterial infection. No sign yet, but we're watching.

We did have a fun experience this morning (no, really, no sarcasm).  His doctor asked a "huge favor, and you can say, no".  Could they bring in a couple 1st year medical students to see Aaron.  Could they?  Oh, yeah.  I love showing off my baby.  And I love the opportunity to help future doctors see that possibilities and miracles do exist.

One of Aaron's older brothers is working on the Citizenship in the Nation merit badge.  It's one of the required ones for Eagle Scout.  Below is requirement number 8.

Name your two senators and the member of Congress from your congressional district. Write a letter about a national issue and send it to one of these elected officials, sharing your view with him or her. Show your letter and any response you receive to your counselor.

Now, I'd like to think the reason I wasn't more helpful was because I was doing something important, but truth is, I can't remember what was going on.  The sum total of my help on this one was to reply, "I can't remember. Look it up.  It's on the internet." when I was asked who our national representatives were.  That was it.  No names, no ideas, no nothing. 

Here's his letter.  I really hope Mike Lee sees it.  More, I would love for many, many to see it.  See, it's written by an 11 year old with a brother who has been listening.  He's listened as I've ached over the many, many others who haven't been given the support his brother has.  He's prayed for those kids and their famlies.  And he wishes their familes could have what we have been blessed with.  Thanks, Joseph, for your loving heart.

DEAR MR. LEE

I would like to talk a little bit about Medical Care.

Most people aren't getting the treatment they need to stay alive.  My little brother is one of those kids with the medical problems.  It would be nice if other states would take care of people with trisomy 18.  I would like it if you could try to make it so that other states do that.

Sincerely,

Joseph Peterson

From:  Joseph Peterson

To:  Michael Lee

Tomorrow, Tomorrow

Snot Bubbles!

Well, again, we're waiting.  Aaron's had  rough night, and a rough morning.  Remember that really lousy cold?  The one where you wanted to lie down and give up?  Where you really, REALLY wished that someone would just come and put you in a coma for a week or so?  Yeah, I think that's the one we're dealing with. 

I'm so glad we didn't go home last night, because early this morning the question was, can he stay on the floor, or do we need to go back to PICU.  They just revisited it again.  His upper right lobe has collapsed again and he's needing a lot of oxygen.  They increased his CPT (chest physical therapy, they pound on him and he thinks he's at the spa) from every six hours to every four hours.  We've looked again and there doesn't seem to be a bacterial component.  It's just a virus.  We just have to give him the support he needs. 

He did manage to rest from about 6 a.m. until about 10:30 or so.  Then he woke up coughing and struggling again.  This could be a long haul...

Would you PLEASE . . .

"Would you please, sit down, stand up, speak louder, be quiet, stop running, hurry up?  Grow up!  You drive me crazy!"  There's a poem about wishing your kids would -- fill in the blank.  And at the end you're left with a clean, quiet home and only the whisper, "I did."  But I think that poem also has the hope of a return of the now grown child, maybe bringing another little one (grandchild!  Yea!!) to run around and then go home. 

I think we tend to forget that some parents would give almost anything to be able to hear and see their child the way we sometimes wish we wouldn't.  I think we've all complained at one time or another about dirty diapers and snotty noses.  But I know way too many who would love to have those back. 

A mom I know was in the store with her daughter who is medically fragile and in a wheelchair.  Someone, who's own children were running wild and had her frazzled said, "you don't know how lucky you've got it to not have to chase her."  Lucky?  I'd like to think that comment came from someone at the end of their rope who didn't stop to think.  I pray her children don't really have a mom who wishes they weren't going to grow up.  Because yes, my friend doesn't chase her daughter, but I'm pretty sure she would love to have that chance.

A couple years ago, I was at a soccer game.  My son played keeper at the time, and was pretty darn good.  He came out on a gamble, on what I thought was beyond risky.  I'm screaming at him, (from the opposite end of the field), "You idiot!  Get back in the goal!  Get back in the goal!"  He didn't listen (good for him!) and won the gamble.  In hindsight, it was really the only way to try to prevent the goal.  If he hadn't gone out, they would have scored and this gave his team the chance to catch up with the breakaway. 

After the game, I asked why he'd done it, and if he'd heard me yelling.  With the self-assurance of a teen who knows everything, and I'm sure it helped that he had won the gamble, he shrugged and grinned at me and said, "No, I didn't hear anything, and I knew I'd win."  But if he hadn't, had he heard me?  Would my yelling have just made a bad situation worse?  Because, trust me, NO ONE feels worse than the keeper when a goal is scored.  And it doesn't matter if it's because they screwed up, or the team screwed up and left them facing two or three forwards all by themselves. 

In the heat of the moment, I let my emotions get away from me. I don't try to tell my kids what they've done wrong after a game, but I know parents who do.  I don't think they realize that there are parents who would give ANYTHING to see their kid just be able to stand at home plate with a bat in their hand, or strap on shin guards to play soccer, or sit on a stage with other out of tune instruments getting ready to play in a concert. 

Across the hall from us here in the PICU, a green butterfly hangs on the wall.  It's been there since we checked in on Sunday.  Inside the room, somebody's baby isn't going to go home with them.  Ever.  On the other side of the floor, is a 15 year old who has just been diagnosed with a brain tumor.  His is treatable and right now his mom says that he's just relieved to find out there's a real reason for the lousy way he's been feeling for the last several months.  But he's still got a long fight ahead of him.  Last night, a dad came frantically up the stairs as I sat outside the PICU.  His baby had been lifeflighted in heart failure from another hospital in the valley.

Earlier, I met a family from southern Utah who had put their nearly one-year-old down for a nap on Sunday afternoon.  He woke up struggling to breathe and they rushed to their local hospital. A short time later, they were arriving here by lifeflight.  NOT in their plans for the day.  Last week, three girls lost their lives in a train accident.  Tomorrow is not a guarentee.  Hold your kids close.  Make sure they know you love them. 

So I'm pretty sure we're being sprung today.  He's still kind of high on his oxygen, so that may put a kink in the plan.  We'll spend the next several days sucking thick green snot out of his nose.  (Is that a little too graphic?) and changing those dirty diapers.  We'll be giving him lots of TLC.  While the snot and diapers may not be my favorite thing, I'm grateful I still get to do it.  There are so many who don't.

So if your kid is driving you crazy, just take a minute.  Be grateful you're trying to find jeans you can both agree on, instead of a headstone that will try to convey your love.  Creep into their room at night, and just watch them breathe and squim in their sleep, and know that tomorrow, they will be that whirling dervish again that will leave you breathless.  And give thanks for God for one more day.



UPDATE:  I spoke too soon. He's retaining too much fluid and his oxygen is being finicky. So today we're going to the floor and we'll try for home tomorrow.  I feeling Annie:  Tomorrow, tomorrow, you're always a day away...

And the butterfly room, it's now empty.  Fly high, little angel.  You will be missed.

Baby Steps, Baby Steps

We are slowly, but surely, moving in the right direction.  Aaron had a good night, and we're hoping to make a jump to his home vent sometime today.  Initally, yesterday morning, he was moving fairly quickly down on his oxygen and we thought we might get there last night.  But as mid-day came, he decided to stop sprinting and just settle in for the long haul.  We dropped from 85% oxygen (bled into the vent, not saturation rates) to 65% in just a couple of hours yesterday morning.  Since then, we've moved to 45% but each step is taking from a few to several hours.  They want to see him at 40% oxgen while maintianing a saturation rate in the high 90's before trying to switch him.  BUT it's also been really nice to not have the stutter steps or backtracking that is so often part of this process. 

Labs have all come back and it looks like our good friend rhinovirus, aka, the common cold.  Another reminder that we just cannot be lax about germs around our little guy.

He also started back on his regular feeding schedule and seems to enjoy having a full tummy again.  We know he's doing better because this morning we couldn't keep him upright in his bed.  He kept squirming down to lie sideways and kick his casts against the metal rails.  He's upright now, but only because he's napping!  And he's been happy today.  So we've gone from lethargic on Sunday, to cranky and sad yesterday, to my happy bug coming back out to play again!  Yea!

And speaking of casts, they were supposed to come off yesterday.  We have to go to Shriner's for that because he'll also need to be fitted for his braces and they need their lab for it.  But his ortho, Dr. H. stopped by here after work yesterday to see him and said just to page her when we were getting close to discharge and they'd just get us in.  So grateful we'll be able to avoid another trip up this direction.

So it's just baby steps for now, but that's okay.  My best guess at the moment is, we'll be out of here on Thursday.  Tomorrow is a slight possibility, and it might not be until Friday, but at least we're moving in the right direction.

On the Right Track

He's trying to decide if he's going to play or not.
This afternoon, he's playing!

Aaron is doing better.  He's still not his happy self, but he's getting there.  He's been pretty cranky today with some small smiles.  But that is MUCH better than yesterday where he would just lie there and let them do whatever.  His right lung is opening up and with that, his oxygen levels have improved.  Yesterday, we weren't able to get below 85% on his oxygen.  Right now, he's at 60%!  He's on continuous feeds at a slower rate than he usually gets at night, but over 24 hours he'll get his full amount.  And he's managed to pull out two IVs in 24 hours.  So we're on number three and he's wearing arm restraints to keep him from getting it. 

Aaron's closet in his room.
I bring these so the staff can
see him happy and playful
like we do.

It's interesting how thoughts process here in the PICU.  There's a butterfly on the door across the way.  I really hope it's not the little boy whose mom I met last time.  Another friend's daughter, up in Canada, is really struggling in some bad ways.  A LOUSY way to celebrate a sixth birthday, for both of them.   My heart just aches.

But then, when I was downstairs, I ran into a couple I met a year ago.  She had just given birth and her son had some major issues.  I think I remember that he had hypoplatic left heart syndrome, or only half a heart.  Not a good way to start out life.  BUT there he was, in the stroller, no oxygen or anything!  He was in for a check-up and they're between surgeries.  That was a wonderful thing to see.  And another T18 kiddo who has been in the hospital in Texas is on his way home.  He's not 100%, but like us, his parents can handle most of it at home.

So our goal today:  to be boring.  We're definitely on the right track.

I Lied

I lied when I told the paramedics we wouldn’t see them.  Last night was really short on sleep as the nurse woke me every 1-2 hours.  I’d come out, we’d discuss things, make some changes, and then I’d go back to bed hoping to sleep the rest of the night.  By 5:00 a.m. we needed to be done playing games.

Over the last 48 hours we’ve had increased secretions, with some yellow color in them.  He’s been a little higher overall on his oxygen, but not by a whole lot.  He usually sits  around 1 to 1 ½ liters and he’s been more on 2 and sometimes 3.  During the night he went up to 5.  Also, about 2:00 a.m. on Saturday morning, he had a big desat, down to the high 60’s and took a while to come back, about 30 minutes before he was back in the 90’s and another 15 minutes to bring his oxygen back down.  About 12 hours later, about 2:00 p.m. on Friday, he did something similar, but into the low 70’s and not as long to come back up.  Both times he was gagging and choking and retching.

Last night’s 8:00 p.m. bolus feed went just fine.  No problems or issues.  He’s supposed to start continuous night-time feeds at 10 p.m. at a much slower rate than his daily bolus feeds.  We started them, and he quickly let us know that it was not a happy thing.  He started gagging and retching and had a really hard time with them.  We stopped for a time and tried to restart.  Then we tried going at half-rate.  Then 15 minutes on and 45 minutes off.  By this time, I really just wanted to be able to get something in him.  That didn’t work either.  So when the nurse came for me the third time at 4:30, I spent some time thinking and looking at everything.  He was quite a bit higher on his oxygen, but was still within our ability to support.  But he was also working much harder to breathe.  And I hadn’t been able to keep anything in him since 10 p.m.  I knew it if he started getting really dehydrated, it would be much, much worse. 

Transportation went pretty well, until he started throwing up again.  He dropped his sat rate and we had to go higher on his oxygen just before we got here.  We actually came most of the way on 3 liters (thanks to his DOSE – Daddy Oxygen Stimulation Enhancer – rocking time with Dad before we left), but then hit 4 and then 6.  When we went to 6, he told the driver to speed it up, but we were turning into the hospital by then. 

Side note:  For those who may not be familiar, Aaron does his very best on Daddy’s shoulder.  Those two have a really special bond.  So when he’s struggling and we need an ambulance, Daddy holds him and he’s usually looking okay by the time they get here.

He’s still pretty miserable, but hasn’t thrown up since about 11 a.m.  He’s started in on a low-grade fever, and we’re treating that and his discomfort with Tylenol.  He’s on the hospital ventilator at 80-100% oxygen.  We can’t get him below 80% right now.  His abdominal x-ray came back negative, but his chest x-ray has a large pocket of atelectasis, or collapsed lung in the upper right lobe.  And, as far as I know, we’re still waiting on all his labs.  So I don’t know how long this will take.  He may surprise us all and get out in a day or two, or this may just be the beginning.  But I’m not holding out too much hope for getting these casts off tomorrow.  Oh, well.

The Boy Who Lived

With apologies to JK Rolling, I've borrowed the title to the first chapter of her first book.  But then maybe she would forgive me if she realized how much a staple she's been in our lives.  Her books have been devoured so many times, that we had to replace some of them.  Several years ago, my boys wanted a Harry Potter birthday party.  Their older sisters put together what they hoped would be a fun Jeopardy game with different categories and different levels of difficulty.  It probably would have been fun, except that my boys thought even the hard questions were too easy, and the rest of the guests thought the easy ones too hard.  In other words, my kids LOVE her books.

Aaron 33 weeks gestation

But, I think her premise, that love is what saved Harry, is a true one.  It is no secret that we were told not to expect Aaron to live.  Even if he was born alive, we could not know if we got more than minutes with him in this life.  There is no "reason" why Aaron lived and continues to bless our lives.  But he is loved.  That's not to say those who have gone home early weren't loved.  But William used to say that he lived on love and mother's milk.  Well, that milk gave out a long time ago, and he's still thriving.  So I'd have to say it was the love.  Our love for him and his for us.  And the love of so many, many family and friends around the world.  So today, I say thank you.  Thank you for sharing your love that keeps him alive.

Rebekah Faith

Today has been a much better day than yesterday.  I worked through those emotions and thought I was able to move on.  Not happy about it, but going to deal with it.  Whatever "it" was.  Then, this afternoon, I got a phone call from a friend across the country.  Dear Susan has precious Rebekah (love how they spell her name!) who is 30 months old.  That's right!  2 1/2 years yesterday!  She called to tell me that Rebekah had similar findings, and it probably wasn't really an atrophy, or a wasting away of the brain, but something else called agenisis, which means that his brain hadn't ever developed fully and properly.  Well, duh, that's one thing we can all agree on with our little ones.  They're brains are definitely different than the rest of us.  I still like Jonathan's statement from about a year ago.  He said that Aaron has to have T18 because he's really this superhuman genius and it allows him to live with us normal mortals and be able to stand us!

So take that, Voldemort!  You still don't get to win.  Love will win out in the end.  Love does conquer all, even if we will someday have to say goodbye for a little while.  After all, it was love that brought our Savior to the Earth and allowed for the atonement.  So it will win.  That outcome is not in doubt.

4 weeks old

 And now if Christ had not come into the world,  . . .   there could have been no redemption.  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 ^asting, there could have been no resurrection.  But there is a ^aresurrection, therefore the grave hath no victory, and the sting of ^bdeath is swallowed up in Christ.   He is the ^alight and the life of the world; yea, a light that is endless, that can never be darkened; yea, and also a life which is endless, that there can be no more death.

Mosiah 16:6-9

My Little Overachiever

This week's been busy (like I haven't had a busy one in the last two years?) and also a bit rough.  We celebrated Monday by going for flu shots (fun!).  Yeah, it's that time of year.  The sign is going up tomorrow.  It's the one that says, "Help protect Aaron.  If you haven't had a flu shot, please don't come in.  If you are sick, think you might be getting sick, or been around anyone sick, please come another time!"  We were also nurse-less on Sunday night because our nurse had a sick kid.  I'm serious about this.  NO ONE SICK!

Then on Tuesday, Aaron had physical therapy.  It's been quite a while, because he kept timing his hospital stays to interfere with his appointments.  His therapist brought out an iPad for him to play with during her visit.  He LOVED it.  He had a lot of fun playing the "piano" on it and watching the shapes move and listening to the sounds.  Tuesday was a good day.

Waiting to go for his MRI

Wednesday found us back up at the hospital.  Because of his ventilator, he had to be put under general anesthesia for his MRI.  Somehow, we didn't think it a good idea to try to go an hour without breathing assistance, and his vent definitely has metal on it.  But, he tolerated it really well and woke up quickly afterwards.  The only hard time was when he got cold.  It took a little bit for us to figure that out but once we did, he was fine!  He's definitely my kid.  For those who don't know me that well, William decreed years ago that I needed to take a jacket with me, even in July in Phoenix.  It's not quite that bad, but I do get cold easily.

Thursday was another hearing aid check-up.  We had some interesting results.  R. did a bone conduction test where the pads are put right on the skull just behind the ear.  I couldn't hear much of it, but I could certainly tell when he did!  You know that sad, scared baby face that just breaks your heart?  Yep, he didn't like it much at all.  It was easy to tell that it was different and unfamiliar to him, and just downright scary!  I felt so bad for my baby, but it was important that we could get the test done.  We also did a traditional sound booth test where there are sounds broadcast from different corners and we look for reaction.  While the bone conduction was obvious, the other one was not.  We really couldn't see much change at all.  So it looks like most of his hearing loss is conductive, or getting the sound from the outside into the brain.  And that also helps explain why he loves to lay his head on Daddy's shoulder while he sings to him.




So, other than busy, what's so rough about this week?  And why is he an overachiever?  Yeah, I'm getting there, trying to put it off.  Yesterday, I got the call from Dr. M in special needs regarding his EEG and MRI.  His EEG was largely "unremarkable".  He's got abnormal patterns in his brain, but they're consistent with his syndrome.  The MRI, well, not so much.  The only thing we have to compare it to is a brain ultrasound from the NICU, 16 months ago, but there have been changes.

His ventricles, the fluid-filled pockets in his brain, are increasing, probably due to the fact that his brain tissue has atrophied some.  He also has a subdural hematoma near the base of his skull.  This often happens when there is some sort of trauma, but we know he hasn't had any.  (Now if it was one of the others, good chance!  Those heads always seem to be being knocked around!)  It's possible that the bridging veins in his skull, those that connect the brain to the skull, have been stretched some as the brain has shrunk and that has caused the bleeding.  But really, we don't know what's going on or why.  Dr. M confessed to being completely stumped.

So, apparently, my little guy, not content with his 11 specialists (plus 4 therapists) has decided to make it an even dozen.  And we can't just add in neurology (although I may be wrong and we may have them involved, too), we have to go to neurosurgery.  I used to work for a neurosurgeon, back in a different lifetime (the BC era, before children).  I know what they do.  They cut on people.  Surgery, you know.  I'm tired of cutting on my baby.

So I've been a bit brittle lately.  Two hospital stays and some uncertain results can do that to you.   So, if you see me, and you don't want to deal with it, I understand.  Just please don't look beneath the shell.  My shell is a good thing  I discovered it a year and a half ago.  It's a hard covering I put on to face the world.  It's what lets me laugh when inside, I'm crying.  It protects you, and it protects me. It's warm and safe inside and I can hide until I figure out how to deal with things again.  I wrap it around me like a blanket, and just let my nose poke out, kind of like a turtle.  I don't stay inside forever, only until I feel strong again.  I just want it to all turn out okay.  I know in the end, it will.  But that end, it's a long, long, long way away.  And sometimes, it's just hard.

A Wave of Light

Today is International Pregnancy and Infant Loss Day.  In 1988, Ronald Regan set aside October as Infant Remembrance Month and the 15th as a specific day to remember these little ones who have passed on too soon. 








On this day, we ask all to light a candle from 7 p.m. until at least 8 p.m.  In doing so where ever we are, we send a wave of light around the world.





I am so grateful for all the special families I've come to know and love over the past year.  As they've shared their joys and triumphs, and heartaches and fears, they have strengthened me. 







I have learned so much about myself this past year and a half.  I've learned that it's okay to not have all the answers.  That it is okay to not be able to do and be everything.  What I have to offer and be is sufficient, because my Savior makes up the difference. 




May we always remember these precious spirits who have come to teach us and make us better people.  May the light of thier spirits always shine bright and bring hope.

Eagle Project

Matthew, my son, is making fleece blankets for Primary Children's Medical Center for his Eagle Scout Project.  His goal is 75 blankets, which will cost about $500.  He is hoping to use a wide variety of fabrics.  Each child who is well enough, can choose their favorite. Often parents choose for a child who is too ill or hurt.

Anyone who has been in the hospital knows how much comfort can come from a soft blanket in a scary, uncertain time.  Please consider donating so that he can reach his goal.  His hope is to have the money before the end of October and the blankets completed and delivered by Thanksgiving.

To donate, you can use the "donate" button on the right side of this page.  Thank you!

Happy Bug!

Happy Bug!

 My happy bug is back!!

This morning when I got up, I also packed for the hospital.  Aaron had another rough night.  He was still so sad.  We've seen a small smile or two, but that's it.  No playing, no happy, just tired, lethargic, sad baby.

When we went into our regular trach/vent clinic this morning, the home vent coordinator took one look at him and said, "I don't like how he looks!"  My thoughts exactly.  We tried to figure out what was going on.  Was it ears?  Lungs? (my guess)  Neurology, as in seizures? His head circumference has increased more than the rest of his body, so that combined with the events of last week led us in that direction.

Waiting for his EEG.

An EEG was scheduled and an brain MRI as well.  He snoozed right through the EEG and we'll get those results early next week.  Then, after grabbing some lunch, we went over to radiology to wait for the MRI.  It turned out that radiology wasn't told that he is trached and vent dependent.  That, it seems, causes complications.  We need to have both a respiratory therapist and an anesthesiologist around for him to have an MRI.  So that has now been put off until next Wednesday.  BUT, while waiting, before we found out there were challenges to getting it done, he started acting better, much better.  Like one liter of oxygen better!  The RT that thought he looked so poorly that morning walked through and I called her over.  I remembered that in June, she had told me that it took 24 hours for the body to adjust to changes in the breathing.  Those changes can be weather, altitude, pollution, or, it seems, vent changes.  It had been 24 hours since I had called her and we'd changed his settings.

See, yesterday was really dicey.  So dicey that at one point, I was very close to calling 911.  He was desatting and we were using 8 liters of oxygen just to keep him close to 90%.  Deborah and I did an emergency trach change, and that seemed to help a little, so we kept watching.  But I don't think I even left his room unless she was in there.  I called up to the hospital and told C that I thought the vent settings needed help.  He was using more oxygen, his heart rate and respirations were up.  He was retracting, or using auxiliary muscles to help pull air into his lungs.  And most worrisome, when we'd suction, he'd desat way down into the low 80's and high 70's.  Given his weight, she had me increase his tidal volume, or the amount that's pushed into his lungs.  We couldn't increase the time the vent allows him to take it in, because the vent isn't that sensitive, but hoped that the increase in tidal volume would work.  So we continued to watch.  It helped enough that I wasn't calling 911, but he still had a miserable night.

HOWEVER, this afternoon, he's back!  It's like magic.  He's so happy and playful. He's turning his music on and off, sucking on his finger, and smiling, HUGE SMILES, (although not for the camera, can't seem to get that).  It's almost like when he was first trached and thought this breathing thing was so cool!  I can't tell you how wonderful and freeing it is to see him so happy.

Last casting.

On another note, we went to Shriner's on Monday and got his new casts, his last set.  These are bright green.  We haven't got them decorated yet, but they're kind of fun by themselves.  He gets them off on the 24th, and then uses braces for the next three months.  The fun part is that these are not the big, clunky ones of my generation.  These are thin, light-weight plastic with fun designs.  And we get toes back for the oxygen sensor.  Somehow, he thinks when it's on his hand that it's a toy.  Haven't been able to convince him that it's an important piece of medical equipment.  It's just too fun to chew on.

Yeah, he's a baby, my baby, and I'm so glad he's feeling better.

Um, I Think You Might Be Wrong...

I got home and took a minute to look at Aaron's discharge paperwork.  Um, I think they got it wrong, or more specifically, the resident got it wrong.  Not that it's a big deal.  It's certainly not a critical mistake.  But he listed aspiration pneumonia, (or in his words, viral pneumonia) as his diagnosis.  Sorry, that's not it.  And I told you.

Yep, it's the beginning of the school year.  This particular resident will, I'm sure, learn to look at previous records before making a decision, especially in a complex case.  But he hasn't yet, or at least he didn't go tell his attending that he'd goofed.

I'm not a radiologist.  I'm not a doctor, or even a nurse.  (Maybe I shouldn't say "even."  I know some pretty incredible nurses.)  My medical training consists of a basic EMT course taken seven years ago and Aaron's School of Medicine.  That said, I have been there for nearly every one of his 90 inpatient days over the past 15 months.  (I hit a wall a couple times and went home for one night during two longer stays.)  And I've seen each of his chest x-rays.  There's been more than just a couple.

This is NOT Aaron's lungs, but the
patchiness is similar to what we
always see on his.

So when the chest x-ray from Thursday night looked just like the one on Wednesday, which looked just like almost all of his previous ones (except when he had pneumonia, that was scary), I looked at it and went, "Yep, that's my kiddo."  Now, for almost anyone else, an x-ray like his would say, "we need to do something."  His says, "yep, that's Aaron."  One of Aaron's challenges is atelectasis, or collapsed lung.  It's not collapsed like a balloon, just some of the little alveoli don't like to open.  And sometimes they take turns being the open or closed ones.  But his lungs always look just a little cloudy, and usually in about the same places.

Normal Lungs

So I was surprised to hear the resident announce a diagnosis of viral pneumonia.  After rounds, I asked him why he made that decision.  He then went into viral vs bacterial pneumonia, probably figuring I was asking why we weren't putting my baby on antibiotics to clear stuff up.  No, I was asking if he'd found something I had overlooked.  When I asked him about viral pneumonia vs atelectasis, he agreed that they often looked very much the same.  I suggested he look back at the previous x-rays because I was just going off my memory.  I guess either he didn't, or he didn't want to find Dr. C (the attending) and tell her he made a mistake.  Because there it was on the discharge papers.

Now of course, the fun has continued here at home.  He's still not well.  It is probably a virus.  But I don't think his vent settings were supporting him well enough either.  He did pretty well on our trip to Shriner's yesterday, but still needing more oxygen.  But by last night, I was getting really antsy again.  I even told William that if it were not for our appointment with the trach/vent clinic on Wednesday, I'd be taking him in now.  But there we meet with ENT, pulmonology, respiratory, and special needs all at once.

This morning wasn't much better.  In fact, just regular suctioning had him desatting to low 80's & high 70's and me going quite high on his oxygen to bring him back up.  So I called up to PCMC and got the home vent coordinator up there.  Now, I don't think this woman really forgets anything, but if she did, she's the kind of person you'd say had forgotten more about a subject than most others know.  She agreed that his trouble probably wasn't pneumonia, but insufficient vent settings and probably the weather changes.  Like I said, she doesn't forget and she knows my kid.  So we've increased the settings in anticipation of tomorrow's appointment, and guess what!  He's doing better already.

Yeah, I think I know my kid.  And once that resident learns to listen, he'll make a great doctor.  He's just young, and I guess I'm starting to feel old.

Side note:  We're on our last set of casts!  On the 24th, Aaron gets braces, and they're cute, thin ones, not the big clunky ones of my generation.  He's also up to 17 pounds, 14 ounces!  How's that for failure to thrive!!

Church at Primary's

When we're inpatient at PCMC on Sundays, I always try to make it over to Sacrament Meeting.  It is a spiritual feast every time.  The little branch there has several things going for it, including a 30 minute meeting instead of the 70+ minutes usually held.  Yeah, it's a bonus for those like me with ADD who have a hard time sitting still that long.

For those who are unfamiliar with this, which would probably be anyone who hasn't been up there on a Sunday, the LDS branch is run by the stake whose geographical boundaries take in the hospital.  There is a  very short sacrament service, no announcements, no ward/branch business, a special musical number and one speaker, and of course, the sacrament is passed.  At the end of the meeting, they let you know that if there are others who wish it, the sacrament will be taken around to the rooms.  Also, if there are children or youth who want Sunday lessons, there are those who have prepared them and will come teach them in their room.  They truly do minister to the individual.

But that aside, I've learned I always grab tissues on my way in.  The Spirit is always so strong there.  Even this Sunday, when I was just waiting on William to get there to pick us up, it hit me very hard.  Following are some insights I had.

The musical number this week was "Abide With Me".  The beginning of the second verse starts out "Swift to its close ebbs out life's little day."  For so many, many in that hospital, that little day draws much closer than we, as mortals, think is right.  But our Lord and Saviour knows the master plan and I have to trust Him.  As we sang, "Change and decay in all around I see, O, thou who changest not, abide with me," it struck me again how much I depend on my Savior.  He will not change.  He will not leave me.  He will not leave my son.  "When other helpers fail and comforts flee," He is the help of the helpless and will always abide with me.

As I sat in that room and looked around, I realized, maybe for the first time, possibly what makes these meetings so special.  I think for so many of us, we go to church at 9:00 or 11:00 or 1:00 or whenever we've been assigned that year, because that's what we've always done.  It just is.  It's a habit, a good one, but a habit none the less.  Sometimes, we go really seeking the Spirit, but often I think it's just something we do because it's Sunday again.  In that room, on the third floor of the hospital, there is not one person who is not focused on the reason they are there instead of in a home meeting.  Most people there have a family member who is a patient.  Those who come to help, also realize how fragile life can be.

For some of these kids, the stay will just be a blip on their life's radar.  Yeah, back when I was seven, or was it eight, I got a really bad tummy ache and had my appendix out.  I even went to church in my jammies.  But for others, they will spend much of their life in that hospital.  It will become for them, like it has for Aaron, a second home.  It's a Children's Hospital.  Every patient is a child.  It seems so foreign to most that a child should be sick or hurt.  They're supposed to be outside, running around making noise, or drooling as they stagger-walk in that controlled fall that a toddler has.

And that is why I think church at the hospital is so precious, so special.  Everyone in that room has the need and the desire to feel the comfort of our Heavenly Father.  Everyone knows that they need Him so very much.  And knowing our needs, He fills them.