Nov 29, 2012


Heavy hearted. 

I know it will all turn out ok.  Somehow it will.  In the end, we will see the beauty of the whole process.  God promises that ALL things work together for good.  And I believe that promise. 

In the middle of the process, however, there is often pain and agony.  There is a lot of uncertainty and how to proceed. 

I feel like I'm in a fork in the road and NEITHER trail is good.  I can't stand still.  I have to move on but one trail is full of misery x and the other trail is full of misery y.

An analogy ...

It's not like I have the choice between two good things ... would you like chocolate cake with or without ice cream?  Hmm ... either would be great!

It's not like I have a choice between one good thing and one bad thing... would you like chocolate cake or spoiled milk?  Hmm... a no-brainer!

It's like I have the choice between two horrible things ... would you like your dead rat fried with honey mustard or BBQ?  Hmmm... neither please.  Can't we go back to the chocolate cake?

So here's the reality check:

I know Manny is going to die.  Not today.  Hopefully not soon.  Hopefully after a long, long, long life.  But every human will die at some point. 

I also believe that God knows the NUMBER of our days.  (Job 14:5).   So it makes me ponder ... is there anything I can do to extend or shorten those days?  Is there a way I can make a great decision (based on Godly wisdom and discernment) that will cause Manny to live longer?  Versus making a poor decision that would be life shortening?  This theological debate is not my point but it's something I consider.

Maybe the decision/outcome has already been made and there really IS no struggle, only an internal wrestling.  An illusion of control. 

And if that's the case, how do I get past the internal wrestling faster?  How do I give up illusion of control sooner?  And why does the decision seem soooo darn real and life altering?

I know, heavy topic.  With no real answer. 

So what spurred the topic this time? 

Manny is in the hospital ... yet again.  That's right.  We got here on Thanksgiving, went home on Saturday.  Got back Tuesday.  Respiratory distress. 

What's going on?  he's not tolerating the feeds.  Plain and simple. 

So we start the whole discussion all over again.  Is it the formula? the elements thereof? the rate? the volume?

And the real question ... is there ever going to be some "magic combo" of circumstances where he can tolerate feeds?  If so, it's worth pursuing!  We must push for it and press through all the issues to get there.  The benefits are so worth it ... reducing TPN, which in turn lowers his risk for liver failure and central line infections, etc.  We have even (as a family) had this as our recent prayer request.  That he can eat.  So there's an element of faith that comes into play. 

But what if he can't?  What if he will never tolerate it?  What if I make him worse (like compromise his lung function)?  And what if I just need to say ENOUGH and let him ride out his days on TPN? And when do I make that call? How do I know when to say ENOUGH? 

This is the simple version of the impossible decision I have to make.  I knew it.  I knew yesterday this is where we were.  I even talked to hubby about it.  I prayed about it. 

I feel completely STUCK.  I'm at that proverbial crossroads.  Can't stand still.  Don't feel either decision is "right".  And yet, I am his Mama.  No one else will make this decision for me!  No one else possibly could. 

He had a rough night last night.  Why?  They tried to push the feeds.  They didn't remove them soon enough and now he has gunk in his lungs.  There's a spot on his lung that looks like it could be from aspirating the formula.  Could be the start of a pneumonia.  Or it could be nothing.  But I know he had troubles breathing.  He choked often.  He's got a 100.3 temp.  He's grumpy.  All signs that this is headed south.  And I'm kicking myself that I couldn't convince someone to hear me sooner.  He is suffering because I didn't advocate loudly enough. 

After a long, restless night of him having troubles breathing, I'm tired this morning.  Emotionally tired.  Drained.  Incapacitated.  STUCK. 

This morning, Doc said he wants to keep us here another night for observation.  We both know this could be a thing where Manny gets immediately better or he could get worse.  It's a coin toss.  So better safe than sorry at this point.  I'm fine being here.  But I told him I was losing fight.  Not the fight for what is best for Manny.  Not losing the fight about his quality of life.  But I'm losing fight of, "I want this" or "We need to try x".  I'm out of ideas.  The reality of the decision in his life is weighing heavily on my mind. 

At noon, the GI came in.  She told me what I already knew. I just have to decide which I want to pursue.  Forward with feeds even with the respiratory risks.  Or resolve to TPN alone. 

Everyone understands the impossible decision I am faced with.  They all feel horribly for me.  They see my struggle with this.  

So as of this exact moment in time, I feel paralyzed.  No way to stay still.  No way to move forward.  No clear direction. 

I KNOW that in the future, I'll be writing the follow up blog that says we tried X or we decided Y and all worked out. 

It's just in THIS moment, I am stuck. 

Nov 23, 2012

Thankful for ...

As I went to type this right now, I noticed cyberspace ate yet another post.  I'll track it down and repost it when I can but for now, wanted to catch you all up on the latest. 

His blood got so low that he needed the transfusion.  Then his liver enzymes went through the roof.  Finally discharged on Nov 16.  We drove home and as we drove up, Dan was arriving from picking up the kids from school.  I literally had not stepped out of the van when Sam (11) comes to my door and announces he is sick, that he'd gotten sick during the day.  Cough, fever, etc.  And I told him I love him but that he needed to stay away from Manny. 

We did all the normal de-bugging and germicides and etc. 

Luke (9) ended up getting a version of it.  He has asthma and that was triggered quite severely.  I honestly thought I'd end up in the hospital with him.  But we were finally able to get that under control. 

Meanwhile, hoping the rest didn't get it. 

As I write this, it's Nov 23 and Dan, Sam and Luke were the only ones who got it ... well ... and Manny. 

By Tuesday I was getting concerned.  Tuesday night he struggled with breathing a bit.  By Wednesday he had a 101 plus fever (you know, the number by which we are supposed to be admitted).  So I decided to go ahead and cook the Thanksgiving meal ... just in case. 

Wednesday night was HORRIBLE.  Fever, breathing issues.  He was going down into the low 80s for pulse ox.  (Should be 100, never below 93 for him).  We put oxygen on him and that helped for a while but then it wasn't enough.  By morning I thought we'd head straight for the hospital.  But to my delight, he was able to cough some up and it helped.  Fever went down.  He was hanging in there. 

So we did all our lovely Thanksgiving traditions and had a beautiful time.  We had family over.  Lots of food.  You know, the regular.  By the end of the meal, Manny was not looking good at all.  He was slumping over.  Fever back.  Breathing weird.  Not good.  So I held him and he went to sleep.  (He never naps.) 

During the nap, he was struggling to breathe.  His pulse ox was 90 and his respiration rate was above 50.  It was clear he was going to need help.  And if the nap was any indication of how the night would be, we needed to go to the hospital.  So I called Doc for a room. 

By the time we got here, Manny had already had a 3 hour nap.  By then he was breathing pretty good.  He'd had some really good coughs and was able to get some of the congestion up. 

To my delight but shock, he did great breathing at night!  NO troubles.  At this point I was almost wishing I hadn't come in.  Then again, what if he would have been worse at home?  We have all sorts of things that he could be having an allergic reaction to.  We do our best to clean and even use an ozonator and other alternative options.  But we do have 2 cats, a dog, etc etc.  He'd been tested a while back and it showed he was not allergic but I know allergies can change. 

Anyway, by this morning, I was very hopeful we won't be here long and that maybe he is on the mend.

His chest xray isn't something scary ... then again, I was told xrays "lag" behind clinical findings so it's a bit early to see something. 

His labs are "off" a bit.  Like his white blood cells were 4 on Monday and now 12.  So definitely fighting something.  His liver enzymes are elevated quite high again.  And so is his CRP.  So all showing he is fighting "something". 

Meanwhile, he still has this cough and runny nose and sneezes.  Could be a simple "cold".  But for him, this is never simple. 

He was sounding good this morning until ... his breathing treatment.  He coughed up some strange nastiness and now his chest sounds all rattly.  His pulse ox starts to drop.  Then he'll cough and it comes back up.  So definitely something blocking his abilities to breathe right.

We're at that point where he could easily still beat this and get ahead of it OR it could kick his butt easily.  He could truly teeter either way. 

1pm Doc came by ... right now we are not making going to make any changes to his treatment plan.  We're hangin' in there so don't rock the apple cart as they say. We were talking about how he does so much better sleeping upright like in the hospital bed than the regular bed at home (even though I prop the heck out of him) and Doc asked why I don't have one.  Uh ... never asked for one I guess.  So he said he will work on that for us!  Cool. I think I will like to have one for him. I already have a twin sized bed there so I know it will fit. 

1:15  GI came by ... going to make some changes to the TPN.  Now that Manny is on the tube feeds 24 hours a day he is up to 360 ccs per day and that means we can reduce the time he is on TPN.  Theoretically, it can help save the liver to reduce the TPN.  He is currently on TPN for 20 hours a day.  He will go to 18 hours per day.  If his blood sugar is stabilized, then he will go to 16.  That would be amazing!  We will see.

1:30 as I type this, Manny is sitting in his wheelchair watching his favorite ... Little Einsteins DVD that I brought.  His pulse ox keeps dropping again.  He will then cough and it goes back up.  It had been stable for a few hours at 98-100. 


I am thankful for so many things.  By listing them, however, it makes them all seem "trite".  I really don't think it possible to make a whole list.  We could spend every moment of every day listing and still not reach the end. 

So rather, I think Thanksgiving is a mindset, a way of life.  It's a way of being.  A way of thinking.  A way we live our lives. 

But in THIS moment ... I'm thankful for more time with Manny.  Afterall, 2 years ago we were told our time was up.  I'm thankful there are medicines and machines and people trained to use them.  I'm thankful for people who care about him and want his well being.  I'm thankful for the ability to write down my thoughts and share them around the world and people worldwide know about Manny and pray for him. 

Life is hard.  Some days are much much harder than others.  And some days are much brighter than others.  There are miracles every day.  Some we see and know about.  Others we miss, but it doesn't make them any less valid or special. 

Life is also beautiful.  But we can also find beauty anywhere, even in the pain.  Even in the scars.  Maybe especially because of the scars. 

So during this season of reflection on being thankful, don't forget to be thankful for the hard stuff too.  Be thankful you don't endure it alone.  Be thankful God is holding your hand in the bleakest hours.  You don't have to be thankful for the pain, but I do think we are supposed to be thankful for the process. 

A long time ago, God gave me a word.  It seemed simple.  But even 8 years later, I'm still learning what the phrase means.  "You have a purpose for my life and You are shaping me, Lord."  It's a line to a song I wrote. And it helps answer a LOT of problems/questions.  God has a specific purpose for every human being's life.  AND He needs us a very specific shape.    Because of this phrase, I can more easily go through even the hard times ... knowing there is a purpose for it!  And in doing so, I am becoming the shape God needs me to be. 

Painful?  Yes.  But do-able.