Our Week in Review

This week has been a pretty busy week.  We started on Tuesday with a visit to his plastic surgeon.  Dr. Sidiqqi was pleased with how Aaron's lip looked, but doesn't want us to start massaging the scar for another two weeks since he had that big hematoma ten days after his previous surgery.  There is a little bit of additional bruising and swelling that we've noticed tonight, so we'll hope that nothing comes of it.  His last scab fell off during church today.

Friday was the last day of day camp at Jeremiah Johnson.  Three of the older kids worked up there this summer (and two youngers got to attend as campers), and the last day is a staff family picnic.  So Aaron got to go up to the Wild, Wild West.  And a good thing too, because the council has finally gotten approval to tear the facilities down and build new ones for next year.  I think this has been in the works for at least six years.  Anyway, we all enjoyed it.  It was his second time up there.  Last year we took him and he celebrated by having his very last apnea episode during dinner.  This year he was much more well behaved.

Earlier this week, I put Aaron in the rocking chair to change his bedding.  As I started pulling out his stuffed animals and piling them in the chair as well, I realized there were so many, there almost wasn't room for him.  Then we grabbed a few more and the camera, and had our own ET shot.  Anyone else remember the scene where he hides in the closet with all the stuffed animals?  I think it was one of my favorites.

Aaron had his semi-annual developmental evaluation this week.  I don't have the formal results, but it looks like he's about a four to five month level over all with some scattering abilities up to eight months.  He was also twisting a lot on the blanket on the floor and willing to bear a little weight on his legs when we tried to help him stand.  Mark, his occupational therapist, thinks it may be time to bring in a physical therapist as well.  Aaron is really enjoying playing with his toys in his bed.  He especially loves to hit the bells and make them ring right when Mommy lies down for a nap.  Wake up and play, Mom!

Normal?

 Deborah & I were talking the other day and she was telling me how her perspective has changed.  I told her she should write about it.  This is what she posted on her facebook account.  In the T18 world it has been shared many times as moms have remarked on how she expressed herself so well.

Normal is defined by what you are used to.  This means that everyone's perception and definition of what "normal" is is different, or so I assume, since I've yet to meet a single person who's had the exact same experiences as another and had the same impressions, perceptions, thoughts, etc.  Anyway, my conclusion to all of this was that it was perfectly "normal" to be different, and rather different to be "normal".  This is how I've defined normality for a few years now.  And while that hasn't changed, it had never once crossed my mind that there could be more than one distinct normality per person.

Except that's what happened to me.  I have two normalities, two very distinct halves of my life that are somehow simultaneously separate and connected. 

I have the "normal" life that most people I know have.  You know, the one with friends, work, school, church, and everything else that goes with the day-to-day stuff.  It's the same one I've been living for the past 19 years, nine months, and 10 days (not that I'm counting or anything).  There's been change, of course.  Friends have come and gone.  I've come and gone.  Memories have been made, some much easier to remember than others.  It hasn't all been constant, but the basics have remained essentially unchanged.

Then there's the other half, the other normality.  This one was born February 14th, 2010.  That was the day that I found out that my beautiful baby brother was not going to be "normal".  He had something called Trisomy 18 (he had three of the 18th set of chromosomes).  The doctor called it "incompatible with life".  I was in shock.  So was the rest of my family.  It was such a foreign concept to me.  I wondered how we'd ever explain to my then three-year-old brother that his baby brother that he was so excited for might not be on Earth for very long.  I never did figure it out.  After a while I just stopped thinking about it.  It was too hard.  Not too long after that, on June 13th Aaron Noland Peterson was born.  And the new "normal" that had started to take shape became more of a reality. 

The piano room became Aaron's bedroom.  The piano's still there, but it looks like something of a cross between a hospital room and the room it used to be.  It's hard to imagine it as being any different from how it is now.  There's a ventilator and a long, tall stand that holds his food and some humidifiers.  There are a bunch of monitors that measure his heart rate and oxygen saturation, among many, many other things.  There are a ton of other medical things that help us keep Aaron alive and well.

The bedroom's the least of the changes.  As time has passed I've learned a lot about taking care of him.  I still leave the trach changes to my mom, but I know how to suction him to help him breathe better.  If given instruction I can give him his medicine and his food.  I know which of the alarms means there's trouble just by listening; I can tell when I need to go check on him, and when I need to call for Mom, and when I can just leave him alone.  I'm used to the sounds of the ventilator and find it strangely quiet when it's not going (which means he's not home for one reason or another).

Perhaps the biggest change, and the one that's the most difficult to communicate effectively, is that it isn't too uncommon for both my mother and Aaron to be in the hospital.  It hasn't happened so much lately (knock on wood), but it's happened enough that it just doesn't bother me anymore.  In fact, I've found that it's people outside the family who get super worried.  And that's where it gets hard to explain.  See, it isn't that I don't care.  It's just that I'm used to it.  It's a new "normal", and so it doesn't bother me much. 

And those people who start to freak out about it and get all worried, well, sorry, but it doesn't actually help.  Please, by all means, be concerned, pray for him, be there for my family and me.  Just don't freak out.  I'm not going to suddenly break down and become unable to handle life.  I'm past the shock and personal issues that came with dealing with something like this.  It's "normal".  Let it be my "normal", or at least part of it.  It is what it is.  There's nothing that's going to change that. 

To be honest, I wouldn't change any of it, even if I could.  Back in February when I was first trying to work through this I think I might have, given the chance.  But not now.  Not ever.  I've learned to live with it.  To be honest, I never really gave myself any other choice.  I didn't see giving up or not living life the way I wanted to or not keeping as much of my other "normal" intact as possible as even being an option. 

So I kept going.  And I'm going to keep on going.  Because as much as having two normalities can be confusing at times, I wouldn't trade it for the world.  This is what I'm used to - two different "normals", two halves of one reality that is mine, and mine alone, though I may share parts of it here and there with others.  This is me.  This is my reality.  These are my perceptions.  This is my "normal".

First Haircut!

When you have 7 boys, someone always needs a haircut.  Usually several someones.  So yesterday, I lined them up.  When I finished, I thought about Aaron.  He's had quite the interesting 'do.  He's worn off the hair in the back of his head, and the anesthesiologist shaved the top front before putting in his IV before his initial lip surgery.  So bald in back, fuzzy on top, and the sides were really long wispies. 

I decided the best way to do it was over a sheet, and maybe right before his bath.  I really wanted to keep some of those first locks.  I have them for all the kids. 

So then we got to work. His hair is so fine, that it really just slipped right through the clippers without even cutting.

So I had to take the guard off and use a comb and the clippers.  It's a good thing it's so fine and sparse.  I'm sure it's not even.  But it's cute!

Here he's beginning to think this is all a bit much. Haircut and then bath begins to wear a kid out.

All tuckered out after everything.  His lip is almost healed up.  We go on Tuesday to the plastic surgeon for a follow-up.  It's still a tiny bit swollen, but I don't think it's getting any bigger.  I admit, I'm paranoid about it now.  And his smiles are back!!  I just love those.

He also popped through another tooth this week, right above his bottom one.  None of the other kids ever got a top tooth before they had at least two bottom teeth.  I think he's protecting himself.  The very best way to calm him down when he's hurt is to rub that lower gum, hard.  I've already told him that's not going to happen anymore once he gets another tooth there. 

On Thursday, we went to Primary's Riverton clinic for hearing aid evaluations.  He'll be getting his hearing aids in about three weeks.  I'm really hoping this helps open things up for him.  He's hearing, but not as much as we'd like. 

Today in church, Aaron was just wonderful.  Music really speaks to me and today's hymns were especially poignent.  I have always loved "I Know That My Redeemer Lives."  It became special to me back in college when I sometimes felt so alone.  I love the lines about Him being my friend and alwasy there to listen.  I was singing it to Aaron when the third verse hit me, hard.  "He lives and grants me daily breath.  He lives, and I shall conquer death.  He lives my mansion to prepare.  He lives to bring me safely there."  I will conquer death and Aaron will be waiting when I get to the other side, with the Savior there to greet me. 

If that wasn't enough, the closing hymn was "I Believe In Christ," another favorite.  Aaron was watching as I sang to him.  Again, it is a beautiful song with a beautiful message, but the look in Aaron's eyes changed as I sang the last two verses.  "I believe in Christ; he ransoms me.  From Satan's grasp he sets me free,  And I shall live wtih joy and love In his eternal courts above."  "I believe in Christ; he stands supreme!  From him I'll gain my fondest dream; And while I strive through grief and pain, His voice is heard: 'Ye shall obtain.'  I believe in Christ; so come what may, With him I'll stand in that great day When on this earth he comes again To rule among the sons of men."  He knows those truths.  He feels them.  I could almost hear him saying, "Yeah, Mom.  This is what it's all about.  Someday all my pain and trials will be over and I'll be whole.  I run and laugh and jump in your arms.  It will be so much fun.  But for now, it's okay.  I'm good.  It's all so worth it.  Jesus loves me and He loves you, and it's going to be okay.  Because this life, that's not all there is.  There is so much more for us.  And it is better than you can imagine." 
Thank you my son, for being my teacher.  I love you.

Thankful to be Home!

We're home!  Last night, Aaron didn't sleep much, but he was just playing.  Nothing new there.  It was so much fun to see him happy and smiling and hitting his toys again.  His nurse even read some books to him yesterday while I was working.  He had no desats at all, not even little ones.  So this morning, Dr. Vukin rounded about 8:00 and we were on our way just after 9:00!  I don't think we've ever been out that early.  But then it helps to not have to fill prescriptions.  
His lip looks wonderful and we have all our follow-up appointments.  I thought we might be seeing a little swelling yesterday.  Yes, after last week, I'm paranoid.  But it looks like instead, the swelling has continued to decrease and we're seeing the definition around his mouth again.  

On weekends, the hospital empties out a bit as children are discharged and there are no planned surgeries.  So on Sunday afternoon, we moved rooms as the staff was consolidating patients.  I joked that I had requested a different view.  I really had no idea that there would be much difference, but there was.  The first room had a view of the parking garage.  It wasn't bad, but not anything great, either.  The new one had a panoramic view of the valley.

Last night I was looking out the window across the Salt Lake Valley.  I reflected on the beauty that was created for us to enjoy here.  As I did, I noticed something off in the distance.  It was a lifeflight helicopter and it landed on the roof, just to the left of our window.  I don't know what was happening, but there were three that landed in the space of 2 hours, and another that flew just over to the University hospital (they only bring children to PCMC).  I thought about how there is opposition in all things and the trick is to find the Lord in both the good and the bad.  Without the power of love, there would be no grief.  But I don't know anyone who would give up feeling love to not have to feel pain.  It's part of who we are and this journey we are on.  

I'm ready to roll!  (on our way out)

We're back at home now, and the first thing Aaron did was enjoy a nice rocking time with Daddy.  I think he's really missed that, especially since his original surgery left him with so much swelling that it was hard to enjoy shoulder time very much.  Today he thought life couldn't get much better.  Now he's pressing all the different buttons on his mobile after taking his mid-morning snooze.  Yep, it's good to be back.

Enter into his gates with ^athanksgiving, and into his ^bcourts with praise: be thankful unto him, and bless his name.  Psalms 100:4

Senses, Memories, and We're Still Here

It’s kind of funny how the senses bring back memories.  We rely so much on sight that I think we often forget the rest of them.  I’ve been in the PICU several times since Aaron’s last visit there, but only to the front desk.  Friday night, walking back into the main area, the smell hit me.  It’s not a strong smell, or an unpleasant smell.  But it is it’s own smell.  And it says. “PICU.”  I hadn’t even ever registered it before, but all of a sudden, I felt that tightening and increased awareness that comes with having a child in an intensive care unit. 

Then Saturday morning (I didn’t notice it the night before), I heard the Drager alarms.  The Drager is the ventilator that is used in the PICU that is so much more sensitive than the home ventilator.  It’s not the most sophisticated one they have, but it is the most sophisticated one we’ve had to use.  I learned to tune the alarms out.  They’re not shrill or unpleasant.  More like a computer-generated melodic chirping.  Unlike our home ventilator, I could do nothing with it.  I couldn’t even adjust the oxygen.   So in February with pneumonia and in November & December before our vent trials, I learned, or I thought I learned, to not hear them.  But I heard them on Saturday morning.  Again, all the anxiety and worry came right back.  I knew, mentally, that my child wasn’t on it.  But emotionally, my body responded as if he were still in that situation.  The situation where I was worried that he might not make it.

This morning in church, one of the patient’s alarms went off, just briefly.  It was all the way across the room from me, but my first instinct was, “Is Aaron okay?  What’s he doing?”  Then I had to laugh to myself, because it wasn’t even him.  Yep, our body remembers.  I don’t think our eyes are the most reliable sense.  I can see something and forget.  But apparently my sense of smell and hearing bring back in a flash memories and emotions that I haven’t even acknowledged .

9 p.m.  Sunday   Aaron has slept soundly almost all day.  Even when he’s been awake, he’s been pretty dozey.  I guess last night was pretty exhausting for him, too.  But he’s awake now, and playing.  When shift change was over, the night nurse and I did his trach cares and he was flirting with her.  Even gave her some smiles, which have been in short supply lately.  Now he’s playing with his toys.  He keeps setting off his alarms, but it’s because he’s wiggling and stretching.  He’s even getting a hold of the shiny cellophane in his ball and pulling on it.  That takes fine motor control that he hasn’t shown before.  I don’t know if he’s doing it on purpose, but he’s hooking it somehow.  When I showed him a small stuffed animal, he actually reached out and took it in his right hand and brought it close and cuddled it for a little while.  He’s had such a rough week and a half, it’s really nice to see him interested and playful again.   I don’t mind if he stays up all night and plays.  It’s if he decides he wants to see the RT and nurse in here all the time that I have an issue with.

7/18 6:30 a.m.  Aaron had a much better night last night.  He had a few little desats, but not too bad.  There was a big one about 1 a.m., like the ones he had the night before.  I’m not sure what to think.  I don’t know if we’re good to go home, or if there will be more problems tonight.  I think I’ll ask for an x-ray when we see the doctor, and I’m also wondering about some of his labs.  His hemoglobin, hematacrit and platelets have slipped.  What I don’t know is if the slip has been significant.  I’m just not sure what to do.

1:30 p.m.  Okay, so we’re staying overnight again.  Apparently, sometime during his large desat in the night, the oxygen also came undone.  That’s happened before, both here and at home.   But the upshot of it is that we’re not sure how much was desat because of him, and how much because he just wasn’t getting enough oxygen.  And he did continue to have several minor ones.  This morning his split S1 sound (in his heart) was not audible.  We also got a chest x-ray which doesn’t look much different from before.  So the plan is to watch.  If he continues to do as well as he has this morning (he’s been great so far), we’ll chalk it up to post-op stress and go home tomorrow.  If he does start desatting again, even just the small, frequent ones, we’ll look at probably a partial transfusion tomorrow.  His red blood cells, or lack of, won’t cause a desat, but they can make it harder to come out of.  Kind of like a freight train image.  With fewer freight cars to carry the oxygen, it’s harder to recover when he gets behind.   So that’s where we are right now.

On a fun note, we got to see Nick this morning.  We met Nick one year ago when we were in the hospital for heart failure.  Aaron was only about five pounds, maybe, then.  He's three times that now.  Nick was our PICU nurse for several days when Aaron was fighting heart failure exactly one year ago.  It was fun to talk to him and listen as he was so thrilled to see Aaron looking so good.  Of course, after playing all night, Aaron mostly wanted to sleep.  Little monkey.

Abide With Me

SO glad we didn’t go home last night.  I actually wondered if I was being overly cautious.  After all, we were almost up to his full feedings and there was no reason to think going the rest of the way was going to cause a problem.  And it didn’t.  But something did.  Starting about 8:00 last night, Aaron started desatting.  Big desats.  Down in the low 70’s and low 60’s.  He did this through much of the night, about every two hours.   And the respiratory tech would need to be called and we would still have trouble bringing him back up.  So it was really like about an hour to an hour and a half between when it would end and the next one would start.  We almost ended up back in the PICU.  He finally quit after his 2:00 a.m. desat.  He’s had a few minor ones since then, but not quite that bad.  But the long and short of it is, if we had gone home, we would have come back and in an ambulance, with sirens. 

This morning, Aaron has already had an EKG to test his heart rhythms.  It actually looked like his last one, last February.  But cardiology does want him to follow up with Dr. Menon in the next week or two instead of waiting until December.  We’re also pulling a urine culture and trach cultures to see if he’s fighting off something else.  There just isn’t an obvious answer as to what is going on.  As far as his surgery goes, his lip continues to look wonderful.  I think it may itch a bit because when we take off his arm restraints, his no-nos, he tries to rub it.  So we have to watch carefully when he is taking a break from them.

On a humorous note, at home, Aaron really likes to turn almost sideways in his bed and stick his feet out.  Here the bed is bigger, so it’s more work to get his feet out the side, but last night, he was working really hard on it.

That or he was trying to escape. 

I went to Sacrament meeting here today.  I’ve realized it’s always a good idea to grab tissues on my way in.  It’s almost like that’s one place I don’t have to make sure I stay strong.  I can relax and just enjoy the spirit.  The opening hymn was Abide With Me.

1. Abide with me! fast falls the eventide;
The darkness deepens. Lord, with me abide!
When other helpers fail and comforts flee,
Help of the helpless, oh, abide with me!

2. Swift to its close ebbs out life’s little day.
Earth’s joys grow dim; its glories pass away.
Change and decay in all around I see;
O thou who changest not, abide with me!

3. I need thy presence ev’ry passing hour.
What but thy grace can foil the tempter’s pow’r?
Who, like thyself, my guide and stay can be?
Thru cloud and sunshine, Lord, abide with me!

Text: Henry F. Lyte, 1793–1847Music: William H. Monk, 1823–1889

After that, the brother who gave the opening prayer, called down the powers of heaven to bless and comfort each of the children here in the hospital.  Between the hymn and the prayer, I was very glad for the Kleenex.  Sometimes it feels so hard.  Sometimes it IS hard.  We don’t know how long Aaron will choose to stay with us.  And right now, he’s got some scarier symptoms.  And, as I looked around the room, it was obvious that there are many others in similar situations.  And those were just the children who were well enough to come.  I sat next to a woman whose daughter was just put on the liver transplant list.  Next door is a little boy battling cancer.  In the PICU, we were next to a little boy who had been resuscitated after a near-drowning on Friday.  And for those of us with children with life-threatening illnesses, “Swift to its close ebbs out life’s little day” has new and personal meaning.  It does seem like just a little day when we look at how much time we have, or don’t have, with our children here.  I don’t know how I could possibly even face it without knowing that my Savior loves me and sustains me.  I know He is there for me, “Thru cloud and sunshine,” and always.

Saturday, July 15th

That's an imaginative title, isn't it.  Sorry, the creative brain cells appear to be AWOL at the moment.  But here's what's been going on up here.  We've had a wonderfully boring day, over all.  Aaron did pull a couple of big desats a few hours ago, but once we got him suctioned out well, and got all the junk out, he's done fine since then.  His PICU attending is a friend from a previous visit.  She came in briefly, said "Hi", admired how big he is and asked about the other kids.  When the attending spend more time in social visiting than hands on, you're in pretty good shape.  Which was fine with me.  From a few general comments made by some of the PICU staff, I gather that it's been a rough couple of days in there.  I know it's hard on them, too, when a child is really suffering.  Anyway, here are my notes for the past day or so:

Resting quietly.  Notice the "no-nos" on his arm (the white covering
with blue & red decorations).  He's been quite active and trying to
rub his mouth and nose.  We really don't want to cause any more
trouble for the site, so he has to be hands off it for a few days.

7 am. He had a quiet night last night.  He’s still not on his feedings, so they’re still using morphine and Ativan for pain management.  There doesn’t look like there’s any issue with his blood.  At least his numbers came back in the normal range and none of the other trisomy moms have run into clotting issues.  I’m sure if there were some associated with this, someone would know.  I also went through the T18/T13 medical text chapter by Dr. Carey.  In it, he goes through all the systems with evaluation and treatments for conditions found.  He even covers social aspects.  But he doesn’t mention any blood disorders.  So who knows??

8:30 a.m.  Aaron is much more active this morning.  I don’t know that we’ll be going home today.  We haven’t even started feedings and he’s looking pretty out of it.  Blood gas yesterday came back really good, but he was still heavily sedated.  We’ll need to get another one before we go to make sure his new vent settings are appropriate for him. 

6:30 p.m.  We’re now on the floor.  Aaron started on his formula again early this afternoon, but we didn’t want to overwhelm his stomach, so we started slow and are working up to his full amount.  We’ll probably get there sometime around the middle of the night.  Then, if everything still looks good, we should be on our way tomorrow. 

There may be one glitch.  Earlier this week I heard a sound in his heart that I hadn’t heard before.  Dr. Kalm, his attending on the floor, also heard it before transfer.  It’s an extra S1 sound.  He couldn’t remember right off the significance, or if there was significance associated with it, so he’s going to check with cardiology.  If nothing else, the fact that it’s new warrants a note. 

But for now, he’s resting peacefully, with two antennae in his head.

Good News Post-Op

7/15/11  And the fun begins again.  Yesterday, Aaron’s lip became very swollen.  It really came on very suddenly.  I called and spoke with a resident at Primary’s and he suggested ice and Motrin.  I wasn’t confident in my ability to describe it well, so I also asked if I could e-mail him some pictures, too.  He thought that was a good idea and said he’d talk to his attending and get back to me with what we should do.  I sent the ones on the blog entry A New Bump in the Road.  The following is content of our e-mails:

10:06 pm  from the resident:

Hi Rebekah,
I definitely agree it's more swollen then we would expect but I still think it will be fine. Apply ice packs to it every hour when he's awake and give motrin every 6 hours. It should go down. If it gets hot and more red call or email and we will call in some Antibiotics.
Thanks

10:26 pm, from me:  Thanks! Will do.

1:30 am, from the resident:  Hi. I was told wrong. It's infected likely. Can you see dr Ley in his clinic in riverton Friday morning from 9-11?

In the waiting room before surgery.

So we had a 10 am appointment with Dr. Ley, a partner of Dr. Siddiqi.  He looked at it briefly (he’d seen the pictures the night before), and asked how he was fed.  I told him continuous g-tube.  He asked if he was feeding right then.  I said, yes, and he told me we needed to stop the feeds.  I knew what that meant.  We needed an empty stomach because he was going back into surgery.  He’s also concerned with the size it is, that there will need to be a drain put in and possibly a PICC line for antibiotics to help guard against sepsis.  He’ll be monitored closely for at least 24 hours after surgery, and then we’ll have several days on the floor while it continues to heal.  Once everything looks good again, they’ll go back and re-close it.  Right now, as we’re waiting, it continues to swell.  It’s 1:45 pm and they’re planning to take him back about 3 pm.  At least he’s asleep.  This looks so painful.

Trying to wake up after surgery.

8:30 pm.  Well, being an ad-on and not an emergency, we were the very last surgery of the day.  They finally took him back about 6:10.  When Dr. Ley came out to talk to me, he was very pleased.  There was blood, a LOT of blood and a large clot in there, but no sign of infection.  Also, the muscle that they stitched together last week was still intact.  He said he had actually been baffled by the lack of fever and red marks because Aaron’s face was so swollen.  But those would have been signs of infection and there just wasn’t any.  So he was able to evacuate the clot and even close it back up.  IF everything goes really well, we MIGHT go home as early as tomorrow.  Right now he’s still trying to wake up and we’re in the PICU.  He does look really good.  Dr. Ley’s big concern is the bleeding.  It doesn’t make sense that we would start bleeding and have this much bleeding at all, let along this far out from surgery.  Also, there was the matter of the circumcision bleeding earlier this week.  So they’re going to look a little more closely at his blood and clotting.  That one may take some time.

Not So Easy

So it turns out the fix for his lip is not so easy. Aaron is going into emergency surgery right now to drain the infection from his lip. Then he is going to be in the PICU for a couple days. Please pray for him.

A New Bump in the Road (and on the Mouth)

Last night, Aaron's lip was much more swollen. I took some pictures and sent them with pictures from earlier to the resident in plastics. He thought Aaron would be okay with ice and Motrin. But after his attending actually saw the pictures (instead of just the description?), he told him to get back in touch with me and have Aaron seen because he's probably got some kind of infection. So this morning, we're going in to have it seen. REALLY hoping we can have a simple fix, like oral antibiotics. Some things are simple, aren't they???

FYI: Hospital hierarchy: Intern = 1st year out of medical school; Resident = 2-5 year out of medical school; Attending = Doctor in charge of teaching interns, residents, and everything else. When we're in-patient, sometimes I gage how rough Aaron is having it by noting which I'm seeing. If it's mostly residents & interns and the attending stops once a day or so, I know we're pretty good. Likewise if we're in PICU and have been handed off to a NP (nurse practitioner). If we see the attending more than anyone else, I know I should be worried. Lots of fun.

7/14/11 6 p.m. Day 8 post-op

7/14/11 6 p.m. Day 8 post-op

7/

7/12/11 5 pm  Day 6

7/11/11 4 pm  Day 5

7/8/11 10 am  48 hours

7/8/11  10 am  48 hours

Two Worlds

I have two worlds, two families.  One is the “normal world and normal family.”  It’s the one that everyone recognizes.  It’s where my kids go to school and I go shopping.  It’s where I do laundry and house cleaning, when I can’t convince my kids to do it.  It’s Thursdays at the school concert, Saturdays on the soccer pitch, and Sundays in church.

Then I have my other world.  It’s my new normal.  It’s a hospital room in my living room.  It’s beeps and bells and spreadsheets to keep track of medicines.  It’s knowing what the different readings on medical equipment mean, and how to adjust his settings so they come out right.  It’s inviting registered nurses into my home at night so that I can sleep for a few hours. 

This world is made up of people I’ve never met in person, but who uphold me and love me just the same.  We’re a diverse group.  Some are married, some divorced, at least a couple are widowed, and some have never married.  We are Mormon, Catholic, Baptist, Muslim, Lutheran, Jewish, and I’m not sure what else.  Some believe in heaven while others may not be quite as sure about the afterlife.  But somehow, I think we all believe our babies still live on. 

This is a different family. 

In the “normal” world, we raise our kids, go to Little League games and dance recitals.  We endure PTA meetings, work meetings, and parent/teacher conference where we find out whether or not our kid actually turned in the homework we stood over them as they completed.  We deal with kids’ squabbles and rejoice when they play nicely.

In our “other family,” we watch oxygen saturations and look for the tiny signs that signal big problems.  We are on a first name basis with many medical professionals and our local firefighters.  Our babies think the hospital is their home away from home.  We know more about medical tests and the results than most nurses, and even some doctors.  We pick up on those small changes and know which ones to worry about and which don’t mean much at all.

We cheer when our babies smile, or are released from the hospital.  We cry and scream in pain when they are released from this life.  Because, no matter how often we hear “incompatible with life,” that phrase is just incompatible with comprehension.  Because babies aren’t meant to be buried.  They’re meant to be cuddled.  Children shouldn’t have more medical specialists than they have friends.  Parents can’t have to know more than the medical professionals who have spent years and years studying.  But we do all this.  And because we have each other, we can go on. 

We laugh at each other, and at our kids when they do something funny.  We counsel with each other when yet another strange symptom appears.  And we cry and grieve with each other when yet another angel flies home before his or her parents.  I don’t know if we can actual consol each other.  It’s a pain I don’t know yet, but I know it’s so very individual to each person.  Just because you’ve been stabbed through the heart also, doesn’t mean we both feel it the same way.   So we muddle through, loving and praying for each other.  And somehow, we build these bonds, these bridges, that help us cross to the other side.  To a world none of us ever dreamed we’d be part of.  But one where we can know love in a more pure form that I ever dreamed of.

Smile!

It will be one week tomorrow since Aaron's surgery.  And tonight we captured a smile!  It's still hard for him to smile.  I would imagine it would be with the swelling he still has, but he did it!  He's still pretty uncomfortable, mostly from his circumcision.  But he's getting back to his playful self and even putting his hands in his mouth.  Hopefully the rest of the swelling will go away soon and he will feel even better!

This morning I could hear an extra sound in his heart.  I couldn't tell what it was, so a new neighbor, who is also a NICU nurse at Primary's, came up to take a listen.  I was so grateful she was willing to do this.  His echos have been progressively better, but his heart rate has been up a bit and I was worried.  I think it's probably because of his discomfort.  But I was a lot more comfortable after she came.  We'll just have to keep on using Tylenol for him.  It's no fun trying to work through the pain, and it does hamper the body's natural healing process.

Didn't See This Coming

We're in the middle of a monsoon-type weather pattern (or at least Utah's version of the monsoon).  That means we have the chance for some pretty intense thunderstorms each afternoon or evening.  It's kind of hit or miss, but we watch things pretty closely.  The only piece of equipment that doesn't have a battery back-up, is Aaron's oxygen.  So we have extra tanks on hand.  I've been making sure that the emergency tank by his bed is all ready to go quickly if we need it.  But along with the rain, we can get some beautiful rainbows.  I love it when they shine against the mountains.  This picture was taken from our front porch on Sunday evening.  If you look closely, there's another rainbow above the bright one.  Double rainbow, double blessing.

Aaron's lip continues to improve.  The swelling is still going down and the bruises are turning that lovely shade of yellow-green which means that they're healing.

Out of all of Aaron's procedures, the one I was least concerned about was his circumcision.  Even less than his ear tubes and his ABR.  There were no risks with the ABR, but I was worried about the results.  And if his tubes had come out and needed to be replaced, there was no guarantee that it wouldn't happen again.  And of course the lip repair and the bronchoscopy were at the top of my concerns.

But what took us to the Emergency Department today?  The circumcision, of course.  Saturday night he had some bleeding at the site.  There was a bit more than I expected, but it also stopped.  Then Sunday evening, a little more.  This morning, his nurse came to get me about 5:50 because there was a lot more blood.  So I called urology and they wanted to see him.  I can tell it wasn't an emergency, or I've gotten a lot slower.  I pulled out about 7:05 for the hospital.

It looks like he popped one or two of his stitches and he was really hurting.  So they put two more stitches in, he was much more comfortable, and we were home by late morning.  It was actually nice to go up, get taken care of, and come home in just a few hours.  We haven't done that much.

The other day we got a nice surprise in the mail.  Another dad of a special needs child sent us a note and an enclosure.  I was so touched by his gesture.  We have never met him and probably never will.  Truly an example of Christ-like love.

3rd Day Post-op

We've finally seen a decrease in swelling today.  Aaron's also come off his pain medication, mostly.  We may still need to give him a little tonight, but until this morning, he was on scheduled Lortab.  That means we gave it to him every four hours.  Right now it's been 12 since he's had any.  He's a little fussier, but not too much, and he's easy to calm down.

He's also experiencing quite a bit of bleeding at his circumcision site.  I'm waiting for a call back from the urologist on call as to whether we need to do anything.

Mary, David, Jonathan and Matthew came home tonight and saw Aaron for the first time since surgery.  They were shocked at the swelling and bruising.  The bruises have started turning yellow and green, which almost looks worse, but I know that means it's getting better.  Please pray that our bug has a comfortable night.  He really needs it.

48 Hours Post-op

We're home now.  We came home yesterday afternoon.  Aaron's pain seems to be under control with Lortab, but he is so very swollen.  His circumcision site is looking a lot better, but his mouth continues to swell.  I'm told it should peak at somewhere between 48 and 72 hours post-op.  Hopefully we're closer to 48 than 72.  I'm not sure how much more it can take.  His poor lip has even split a little bit away from the site.  The bruising does seem to be changing in a couple of spots to an older look, so that's a good sign.

He's spending most of his time asleep, which is probably a good thing.  When he does wake, he seems content.  There are no smiles yet, surprise, surprise.  But he does turn his music on and play with his toys.  He just looks at you with these big blue eyes that seem to say, I'm not sure what's going on here.  But they're still so trusting at the same time.  Please pray he feels better soon.  It breaks my heart to see him looking so bruised and swollen.

Update, one day post-op

July 6th, surgery day

3:30 pm.  My poor baby woke up just now and in a LOT of pain.  I felt so bad for him.  He’s on Pedialyte for now, so we gave him some morphine IV and that knocked him out again.  At least he’s resting comfortably.  Hopefully by the time it wears off, he’ll be on his formula again and we can start using oral pain meds.  He’ll be on scheduled Lortab for the next few days and then we’ll go to an as needed basis.  His lip repair looks so good, but between it and his circ, he’s really hurting.  L

8:30 pm.  Aaron continues to be in quite a bit of pain.  We’re using both morphine and Lortab and he’s pretty loopy.  He just thrashes back and forth.  He’s just moving his head back and forth now, but his pupils are tiny pinpricks.  However, his heart rate is finally dropping.  He’s down in the one-teens now instead of 140’s or 150’s.  And that was when he was “sleeping.”  I really hope we can get this pain under control.  That will be the deciding factor of when we can go home, because we can’t go home if he’s hurting this much.

9:30 pm.  I just read through the ABR report with the nurse (because I couldn’t remember some of the details).  Aaron’s right ear is worse than his left ear and he has mixed hearing loss.  This means that part of the loss comes from conductive loss, moving the sound into his brain through the eardrum and bones into the cochlea, and part comes from neurosensory, or the nerves themselves.  That part can’t be helped.  I’m sad for my little boy, that he will not, on this earth, be able to hear well all the beautiful sounds around us.  But the funny part is, I’m not as upset by this as I was when I found out that David, and then Jonathan, are colorblind.  I guess I’m at a different place now.  Then I had two boys who were normal and the thought of someone not growing up was completely foreign to me.  Now, I have a baby who, for all intents and purposes, is deaf.  Not hard of hearing, but deaf.  This is much more involved, serious, whatever you want to call it.  BUT, he is alive.  And that is something that most people, doctors and otherwise, did not think would be.  So I’m sad, but I’m not devastated.  We’ll just have to find a way to work through this latest challenge.  And someday, when he is resurrected, his hearing will be perfect too.  In the meantime, I will just enjoy every moment that I get to feel his perfect love.

Thursday, July 7 -- one day post-op

7:00 am.  Aaron is doing so much better this morning.  His last morphine was at 11:00 last night and he is resting so comfortably right now.  He’s dropped his oxygen usage and he looks so good.  He had a very quiet night.  Hopefully we’re over the worst of the pain and we can manage the rest with oral medication.  His face is still quite bruised and swollen, but the worst of that should be over by tomorrow.  Last night, I really wondered about being able to go home tonight.  Even with both morphine and Lortab, he was in so much pain.  I would stand next to him with one hand under him and the other patting his chest and he would be fairly calm.  But if I even paused to switch hands, he would start thrashing all over again.



Sleeping peacefully, sideways.  The contraption on hishead is his IV,
enclosed by half a cup.  I think it's supposed to keep him from
trying to yank it out.  Instead, he just grabs it somewhere else.

  

He’s so funny about his sleeping.  At home, he wiggles and squirms until he’s lying almost sideways in the cradle with his left foot, or sometimes both feet, sticking out of the side of the bed.  We keep trying to block his way because that’s right where the rocker is and we don’t want his foot to get hit.  Well, here, once he got wiggled down, on that same side, he fell asleep and has been resting comfortably ever since.

8:30 am.  Aaron is still resting peacefully.  His floor attending, Dr. Smith, has already come by to see him.  We’re waiting on plastic surgery to round on him and then we need to get his prescriptions.  It looks like we’ll be out of here, hopefully, by noon.  He is doing so much better today.