The Final Road

Dear Friends,

Liam's condition worsened seriously over the past weekend.  On Monday, 8/30/2010, we decided against  any further treatment.  She's entering hospice care at home.  The only treatment given will be to keep her comfortable.

 Liam touched the life of so many of us.  I'm sure many people want to come say goodbye.  Please allow us time to settle down with Liam at home and refrain from visiting and calling (including Rachel's cell phone).  We know you care and love and cry with us.   We will post visiting hours - when we're ready.  Please respect the family's requests.  

Many tears.

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Watching football together again

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It's Friday night.  The Falcons are playing a pre-season game.  I turned the TV on.   Back before all this mess started, Liam used to be my sports buddy.  Liam, who was asleep all day (and most of the last several days), heard the TV and opened her eyes.  She gave two most unconvincing OOOWWWies, then just laid there with her eyes wide open.  We read a few stories (one eye kept on the game), then she went back to sleep, leaving me to suffer the Falcons alone.

Here's where things stand:
It looks like the fungus is on its way out - if not completely out already.  Earlier this week the culture came back negative and we were very hopeful that it was gone.  But that was only after 8 and 16 and 24 hours.  These results all came back negative.  But then the 36-hours culture of 8/24 came back positive.  Bummer.  However, it was explained to us that the more it takes the fungus to show up in the lab, the weaker it gets.  And indeed, the culture from 8/25 is negative.  We're hopeful that it will continue like that.  (OOOF, these Falcons are just terrible.)  Where were we?  

Earlier this week Liam had also problems breathing.  They had to put the oxygen mask on her.  Meanwhile things got better.  She is with her usual nose-thingy fro breathing.

Since they removed the vas-cath out on Tuesday, Liam didn't have any dialysis this week.  So far so good.  The target, as far as I know, is to restore a new vas-cath on Monday.  That of course is depended on the infection.

Ok Liam, I know you love football, but this game is just awful.  

A very close call

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It is out
Tuesday, 8/24/10
Step 1, taking it out, is done with success.  Confused?  Keep on reading.

This I believe
Oh yeah, and I forgot to mention:  I believe in Liam.  I really do.  It's difficult not to believe in her after seeing her in the past 15-something years climbing out of the deepest and darkest holes.  Not with the help of any god, mind you, but with her own will power.

Back in time
Monday, 8/23/10  (Yesterday....all my trouble seemed so far away...)
Back in November 2009, Liam almost said goodbye for the last time.  I'm not sure if today was comparable, but it had some scary moments.  Much like back then, I was sitting in the office when I received the call "get here NOW".  Unlike back then, when I was very emotional, I calmly sent an email to my team asking them to cover for me, packed my unfinished lunch (since lunch is the 2nd most important meal in the day), and drove to the hospital.  Back in Nov 2009 I was crying all the way over.  Today I very calmly was listening to sports radio (Falcons suck).  Strange.  And I was thinking about what's waiting for me in the hospital and remained calm.  If this is her time to go, I thought, then it's her time to go.

Just like Nov 2009, by the time I got to the hospital things have stabilized (why do I have to always miss all the fun?  Why?).   From what I've been told, while at dialysis Liam's oxygen saturation dropped down to a dangerous level, she was very pale - maybe white, her blood pressure and heart rate went up through the roof.  She was maybe, maybe, on her way out.  Yet, somehow she climbed out of the hole again - at least for now.  Anyway, they disconnected her from the dialysis machine and slowly things got better.  By the time I got there things were much better and I was able to complete my lunch (I know you wanted to get a closure on that).  Obviously, I'm giving the short version - without the high emotions and many details - none of which I witnessed myself.

This was completely unplanned.  This is not what we wanted to talk about today.  The topic was supposed to be:

Two for the price of one
In the past week two infections were discovered in Liam:  staph (which she had before once and was treated successfully with antibiotics) and yeast.  It's the yeast we wanted to talk about today.  Actually, I much rather talking about soccer and beer, but yeast it is:
While the staph bacteria adheres to the walls of the lead lines (and blood vessels), the yeast works itself into the material of the leads itself.  It becomes part of the hoses, sort of.  Thus, it's a lot harder to defeat with antibiotics.  The planned solution is:
1 - Pull her vas-cath out (vas-cath is the 3 lines which merge into the vein;  two lines for dialysis, one for the TPN).
2 - Bomb her body with antibiotics while the plastic is out.
3 - Verify that no other cath's in her body (shunts) are infected with the fungus.
4 - When the monster is confirmed dead, restore a new vas-cath. 
(5 - Optional: Pray for that it won't return.)

Both pulling out and restoration are a [small] surgical procedures, which Liam's not doing too well with.  But there's no other choice. 

Ok, so the plan was to pull the vas-cath out immediately following dialysis.  That would have allowed her max time to fight the fungus with no foreign infected plastic in her body between dialysis sessions.  However, it wasn't done yesterday.   As noted above, it was done today (Tuesday) - successfully.  It really took only a few minutes under very light anesthesia. 

Liam is breathing on her own, but still with the oxygen mask to help.


Now, two questions:
1.  How did the fungus get there in the first place?
Every foreign material in our bodies is an open invitation for infections.  If we have weak immune systems, as Liam does, it is much easier for the infection.  If it's being "fed" with TPN, the fungus is very happy (and even asks for a second serving).

2.  Why wouldn't the fungus return with the new vas-cath? 
Good question.  The answer is simple:  there are no guarantees.  For a matter of fact, Drs tell us about kids with different cath's who require repeating surgeries to replace infected ones.  Considering the fact that she had this one for such a ong time (6 months, approx), I'm hopeful for a quite period (but wouldn't be surprised if the fungus returns soon).

Technicalities
Some of you keep saying "I wish that I could help".  Well, maybe you can help the helpers.  If you'd like to help with meals, please contact Chance (chancita at g-mail);  If you want to help with driving little miss sunshine (Meitav) to-from, please contact Darma Natha (Robert):  runewit at yahoo. 

Unbelievably amount of thanks.

An important clarification regarding the last post (God)

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It came to my attention that a few people read too much into the words.  Some said that they could feel my frustration.  It's probably the result of my poor writing skills.  So please allow me to clarify this now:

1.  I'm not frustrated.  Period!  I'm hurting with every OOOOWWWie, I'm worried about Liam's declining health (or what's left of it), I hate the planning we have to do (who wouldn't be???) - but I'm not frustrated.  Frustration is when you try something or expect something and it doesn't happen (for example, I had a problem at work that we tried to solve for 4-5 months;  everything we tried failed.  That was frustrating).  And that's not the case here.  Even if they try something else to help her and are unsuccessful, I'm still not frustrated.  Liam is such a complex case that getting frustrated with her would be too naive.  Furthermore, I'm not the type of a guy who easily gets frustrated.  Frustration is so unproductive that I simply (and naturally, somehow) move away from it quite easily. 
Lastly, I didn't write it overnight.  It sat in my draft folder for several days.  I revised it several times and even showed parts of it to readers to get feedback before posting it.  So if there was any frustration in me (which there wasn't), it surely wasn't there for the whole week that the writing was being worked on. 
So there was no frustration.  Case closed.

2.  There's no linkage between my own disbelief in God and everything that's going on with Liam.  Nothing, zero, nada.  I even said it in the previous post:  I held my current opinions BEFORE Liam came to this world.  For a matter of fact, I feel a bit  guilty.  Not because I'm Jewish (and that's what Mom taught me...), but because I used Liam to express my thoughts about society and God.  She really has nothing to do with it. 
At the same time, since Liam got sick, God is being mentioned in my vicinity more than ever before.  So it was important for me to explain to the "God-expressors" that maybe, just maybe, God is not that universal like they expect it to be.  As I said previously, food for thought.

3.  God that's in the heart:  Under the question "What is God" I should have probably added another item.  Many people believe in "SOMETHING".  They may call it God or may call it something else.  They may or may not practice religion; they may not talk about "it" everywhere; but they do have such concept in their heart.  I have nothing against such concept.  My only "problem" with God is when we, human beings, can't explain something, we use the easy-out.  For example, Liam:  why was she born like that?  is there a medical explanation?  why such a good person "deserve" all that suffering? (I'm using the word "deserve" very reluctantly...."deserve" implies that it was supposed to be different, which nobody knows); etc.  Well, not everything MUST have an explanation.  I think nature is such that we don't know enough about it yet.  Maybe some day we will.  Meanwhile (and thousands of years ago) people replaced I-don't-know with it-must-be-God.  It caught on and stayed.

Bottom line:
I was extremely calm, non-frustrated, and clear minded when I wrote everything so far.  If you read something into it, something I didn't say explicitly, you're welcome to bring it up and I'll clarify it for you. 

But if there was a God

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Caution, personal "disclaimer":  This is MY blog.  I don't owe anybody  any explanations or excuses.   Still, many of the readers here are friends, family, or just people who care.  There's no intention here to hurt anybody's feeling.  Please remember that as you read.  Again, this is MY blog and my place to express my thoughts.

WARNING:  I'm shooting randomly from the hip with no aiming.

Ok, here we go:
Those of you who know me well know that I don't believe in god.  I have a long history of maybe not really searching, but asking a lot of question.  I did have my doubts - both ways - when growing up (I'll be happy to elaborate, but this is not really the topping here).  Later I also did some self studying.  All led me to where I am today - not believing in god - which I can explain and defend (defend???  what is there to defend?) at any time (it may take some beer if you want to hear me....I don't work for free). 

But if there was a God (or for those readers who do believe in such), how can you explain and justify what Liam is going through?  Is that God who choose to put her through all this misery?  Why?  What did she do wrong?  What's the message in it and for who?  Either this guy doesn't know good from bad or he doesn't exist.  I don't see many other options here. 

If you, yes you, my loyal and caring reader, if you have these answers, I'd love to hear them.  I'll pay for the beer or coffee or whatever.  But please no "God is working in mysterious ways" and no "God is graceful" all that BS.  Been there done that.  I don't buy any of that.  My own family, whom I never got to meet, was wiped out in the Holocaust - together with the rest of the Jews and Gypsies and homosexuals and many other innocents.  No good came out of that.  I lost some of my best friends during the years.  No mystery was revealed there. (But just to clarify, I don't not-believing in god because of any of that.) Don't give me biblical "miracles" either.  Neither of us were there to witness and we don't know who wrote it.   I could go on and on, but you get the point.  And now there's Liam, who not only done nothing wrong (to who?  and who's judging???), but all she is is goodness, and love.  So if you have any answers, please stop by Liam's bed and explain to her what did she do to deserve it.  Don't leave out the God part.  Be honest with yourself.
 
There are many  expressions, slogans, and claims - most of them used in many religions.  For example, "don't question God's wisdom....he must have his reasons...".  Or, "Liam is suffering for a reason....beyond our understanding...".   Please don't bother trying to explain any of those to me or to Liam - if you can't prove them.  It's easy to throw the responsibility on somebody else with no cost to you; likewise, it's easy to let somebody else suffer when you don't feel a thing.  Sorry, words won't do it.
 
And if you go to church or synagogue or mosque or whatever to pray, please ask for some answers and explanation for your pray.  Not from your rabbi or priest but from your God himself.  And please, please, please share them with me.

So two questions then:
1.  What do you believe in, Asher?  You must believe in something?
Glad you asked.  I believe in myself first of all.  I believe that love and kindness can solve many of our problems.  And I believe that education can teach us take responsibility and action and not hang everything on God.  (But I don't believe I'll get to watch golf this weekend.)

2.  So what is God, then? 
I believe God is an entity that early humans invented and created so it would help them explain nature.  But like so many other things in this world, it got overrated and out of hand. (Thus, I also believe that all gods were created equal.  I don't see no difference between the Jewish god and Jesus and Muhammad and Shiva and....well, you get the point.  They are all man-made gods or sons-of-gods or whatever you wanna call it.)


Many people said several times how much they pray for Liam.  We certainly appreciate it.  We really do!  People's own beliefs and good intention has nothing to do with this posting.  At the same time, what are all the prays good for if they don't yield results????  (Similarly, why pray?   Who can tell if it's good or bad or meaningless?  Should I thank people who pray for Liam?  Why?)

This is not a rant.  I held my opinions - I prefer to call it KNOWLEDGE - way before Liam came into this world.  This is food for thought for anybody who can justify Liam's suffering and who can link it to their God.

This posting's title is "But if there was a God".  Am I angry at God or think he's being unfair?  No, since I don't believe in its existence.

And now, if you excuse me, I'm heading over to her REAL bed to hold her REAL hand and hear her REAL screams.  Ok baby, Abba's here.  I'm sorry that you're hurting.  I'm sorry you don't feel well.  You don't deserve this.  Soooo sorry.  Ok, ssshhhhhhhh now, baby, let's try to get some rest.  SSSSSHHHHHHHHH.

The infections are back

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Methods of fighting them are being discussed at the present time.  Meanwhile, Liam screams.  It's not fun.

Meanwhile, Liam screams

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The early days in the hospital are always the most difficult.  They are searching, talking, taking lab samples, and maybe even guessing some.  Meanwhile, Liam is screaming.  Pain meds which used to work well on her, are suddenly less effective.  That's the situation as of Wednesday AM.

Back in the hospital

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Liam's back in the hospital after a very difficult weekend at home.  More details to follow in the next few days.

Unroutinely routine

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Another many-downs-and-a-few-ups week.  Looks like we're in a new phase - maybe (just maybe because truly we don't know and sometimes things change by the minute).  In this new phase Liam is mostly sleeping or with her eyes closed.  When she's not, she often complains and moans.  Now, not all moans and OOOWWWWW really mean OOOWWWW.  It may mean 'role me over' or 'read me a book' or 'I need company' - even if it's in the middle of the night.  And sometimes they really do mean that she's in true pain.  

Sunday night - Monday early AM:
Out of pain screams like that we never heard before.  Never!  Liam's in what looks (eh, sounds) like extreme pain.  But we don't know where the OOOWWWWies coming from.  There's not much we can do except for pumping more pain meds into her and try to comfort her.  
I apologize, but it seems like my words are missing the target again.  They are not articulated to describe what she's really going through (and us too, to an extent).  And sometimes I feel like my words are not good enough for Liam either.  What do my attempts at comforting her worth when she's under so much pain?  Sometimes I feel that if she could she would have smacked me and tell me to get the hell out of her face.  "What do you know about pain" is what she might have said.  Instead, she just says OOOOOOWWWWW and NO, NO, NO and EEMA.....I don't feel well, I DON'T FEEL WELL, I DON'T FEEL WELL.  

Monday:  partly cloudy.  Periods of discomfort but also times when she's just very quite.

Tuesday:  BRIGHT AND SUNNY.
And suddenly Liam is well again (I'm told, while I'm at the office, missing all the fun).  She's smiling, talking, even driving her chair.  It's beyond amazing and unbelievable.  By the time I get home I still see traces of that good mood, but she's tired.

Tuesday night however, a 180 degrees turn around.  OOOOOWWWW OOOOWWWWW OOOOWWWW all night long.  Go figure.  (Now, once again, too poor of a description.  I don't know what a short word combination of "OOOOWWWW all night long" means to the reader of this blog.  You have to be there for every minute to truly understand it.)

Wedbesday:  Some OOOWWWs but not too serious.  She's very sleepy.

And this is pretty much the new phase we're in.      

Cumulonimbus

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It was a week of ups and downs.  The ups did not climb that high, but the downs were pretty bad.  The turns from being relaxed and well to being stressed are often sudden and abrupt.  

Wednesday - partly cloudy
Moaning increased.  She has some fever, but not too bad.  I'm disturbed by the moaning, but Rachel goes about her business.  Just before she left for dialysis we discovered a huge bug bite on her forearm.  Is that what's bothering her?  She was quite during dialysis but as soon as she returned home the discomfort resumed.

Thursday - clearing -> partly cloudy -> bad storm
Still at home.  The pains subsided somewhat.  Liam's sort of quite.  But at some point her blood pressure dropped considerably and her breathing dropped to twice a minute.  Twice a minute!!!  She received caffeine and the numbers bounced back.  She was actually in pretty good mood, joked, smiled.
But then came a terrible night with no prior warning.  Liam screamed maybe out of pain, or skin irritation (from the bug bite), or general agitation.  It's impossible to know.  Eventually, after many hours of screaming and many pain and relaxation medicine, she fell asleep around 3 AM.  
It was an important night for us to get a rest.  Meitav was to return from camp on Friday.  We wanted her to meet everybody at home - not in the hospital (not to mention the 7 hours of drive I had to prepare for).  Well, we got no rest.  None.

Friday - lightning
So with only 2-3 hours of sleep behind me I took to the road to Brevard, NC.  When we returned Liam was in dialysis.  After so many hours of no sleep and with a long drive behind me, I was preparing to take a snooze while Rachel went to pick Liam up.  But as I put my head down a severe thunderstorm hit us and we lost power.  We started discussing what to do.  Should we bring Liam back home?  She needs the oxygen machine and a few monitors.  If we hook her up with the backup oxygen tanks, then we can't light candles in the same room.  We weren't sure what to do.  It was 6-ish.  Georgia Power estimated the outage to be over by 8:15.  We decided to take the risk and bring her home (before that we made a few phone calls and arranged for a Plan B in case power is not restored).  She was very relaxed and fell right asleep.  GP changed their estimate to 8:45.  Then to 12:30 AM (Saturday morning).  

Let me just pause here for a second and remind the reader that by that time all of us were exhausted after 36 hours of no sleep with periods on Liam screaming badly.

At that point we were seriously considering our plan B.  But Liam was still sleeping comfortably.  In light of the previous crazy night we were afraid that putting her in her wheelchair and schlepping her elsewhere in the middle of the night would put too much stress on her.  (BTW, we were never worried about the lack of AC or lights.  Minor things.)  Ok, the happy ending was that power was restored by 10:30-ish.  Big SIGH.

We all slept pretty good that night.  Luckily, Liam cooperated. 

Cumulonimbus

The most disturbing thing in the past several weeks is the fact that Liam smiles less and less - nearly none.  When she's not sleeping she's almost always under stress.  Is she beginning to shutdown????

Bike Lane
Every city biker knows it:  Even when you ride on well paved paths, you always need to be on the look for hazards:  a limb that you need to maneuver around, broken glass you're trying to avoid, humps and bumps, vehicles appearing around you, etc., etc., etc.  In comparison, when you drive a car over the same route, you're oblivious to any of that.
Sometimes I find this blog to be much the same.  We, those who take close care of Liam, are the bike riders.  We* go through all humps and bumps.  Most of the readers of this blog are the drivers.  There's little I can do with words to explain what the "bike path" feels like.
* "We" is mostly Rachel.  She's the real and only true bike rider on this path.  Even I'm a driver passing by sometimes - when I go to work, for example.

Mid week report - down and then up

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Liam's home since Saturday.  The first 2 1/2 days were a nightmare.  She screamed out of pain.  Fortunately, this pain was controllable with meds (unlike those nights in the hospital when nothing helped).  Unfortunately, when she wasn't in pain she was asleep.  To be honest, if it was up to me alone, we would still be in the hospital.  Liam started showing "bad signs" of "something" on Friday night in the hospital. There was no fever and all the rest of the vital signs were well.  But there was pain, pain, pain.  I'm too much of a chicken to take her home like this.  But Rachel is truly Superwoman.  She's scared of nothing.  So we didn't get much sleep Saturday night.

Then, sensing that our life is too easy, AT&T disabled our DSL just like that (it turns out that they have an official policy to be SOB's - for real....they quietly and secretly changing the modem access password without letting the customer know....when you get stuck and call them - after spending 30 minutes on hold, they share the new pas word).  Even after the password issue was resolved it turned out there are some physical problems with our Internet line. 
What does all of that has to do with Liam?  Well, it doesn't, except for the fact that we have so much shit going on that when something like that happens it just pushes you over the edge.

Relief:
Monday morning continued to be rough, just like the night before.  When they left for dialysis Liam was still uncomfortable.  Rachel loaded the hospital-ready bag just in case they would stay in TICU.  But when Liam returned home she was so much better.  Not complaining any more, very quite, not requiring pain medication.  Monday night was quite too.  And this is where she is right now - Tuesday PM. 


TPN Pressure
TPN is the liquid "food" that Liam is getting through her vein now.  (Did you know that TPN stands for Total Parental Nutrition?  I wonder if the Dr who prescribed it for Liam knows that beer is part of my nutrition...)  Anyway, where were we?  Ah yes, TPN. Part of the deal of leaving the hospital and going home is getting TPN from an independent provider.  It was arranged to be delivered Monday afternoon.  But 3-5 somehow became 5-7 and that somehow became 7-8.  At 8 they still didn't show up.  By that time Liam was already 2 hours with no TPN.  Not the end of the world, but scary.  What if they don't show up at all, I asked.  We will have to admit her back to the hospital, was the answer.  Otherwise she'd dehydrate. 
Eventually they arrived sometimes after 8.  Happy ending.  But it gives just one example of the many many administrative stuff Rachel has to deal with - that on TOP of taking care of Liam herself.  The administrative stuff includes TPN, staffing nurses, ordering-getting medications, dealing with medical equipment, and probably a few other items I'm not even aware of (not my fault, of course, as they don't explain this kind of stuff during golf events).

Definition of Courage
I already mentioned Superwoman, but I can never emphasize it enough.  While she was getting ready to take Liam to dialysis yesterday, Rachel said "who knows...maybe a good dialysis would turn things around."  And so it was, eventually.  But how many of us would be so open minded and so composed - especially when put under so much pressure?
So what is courage?  Examples might include going to battle knowing you might get hurt; or jumping off a cliff; or trying to start a new business.  To me, though, courage is when you  make tough decisions for somebody else, when you're taking full responsibility, and when you're ready to deal with the consequences - all while cushioning it with thick layers of love and care and softness so that people wouldn't confuse it with courage.  Superwoman has it all.
(Of course, courage is also to watch golf and yell 'hey Rachel, where's my beer?')

The thin line between being a parent and a care giver
The hands are wearing latex gloves and doing work while the mouth kisses and says words of comfort.  Even though we've been doing it for years, it was increases exponentially recently.  Even though we're used to it so much, sometimes it still feels strange (especially after coming back from the hospital).  You see, I'm the FUN dad, the entertainer.  Liam and I watch golf and "drink beer" and tell jokes and read Frog & Toad together.  I'm not a nurse-daddy, right?  Nope, wrong.  The borders between being a parent and a care giver are getting fuzzy and blurry sometimes.  One minute I'm [trying to be] funny; the next I'm an assistant nurse; one minute I'm Toad, the next I'm cleaning and draining and adjusting.  And you have to do it all so that Liam will feel that after all is said and done you're DAD first and foremost.

Liam is home

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It's not that she's so much better from the hospital - only that there's nothing they do that we can't do at home.  Right now she's mostly asleep and moaning - between pain control medication. At this point no nursing service is available so it will be a difficult week - if they don't provide help.

Earlier this week, still in the hospital and when the situation was better, I wrote:

Small victories

• Liam feels better.
• She asks to eat.
• She talks and jokes.
• They were able to correct the problem with the "purple line", the TPN one (which is located between the Red and Blue dialysis lines.  Previously, even though this line was ok one way (in) so she was able to receive her TPN supply,  they weren't able to draw out of it - to check her blood.  As a result, every time they needed blood, they stuck a needle.)

Perspective

It's late in the evening.  Liam moans, but it's not too bad.  We read a book together.  She recognizes my voice and the book and immediately her eyes shine and her face shows interest.  She participates in the reading by completing each line.  She memorized the entire book - several of them, to be accurate.  
The nurses arrive to cath' her.  Usually this is a part where she'd complain more and tense her body - understandably (who in their right mind like it when others access their most private areas???) - which makes it so much more difficult for them to do their job.  This time, however, she could care less.  She's feeling well and reading the book and jokes.  The nurses can't believe it.
And I'm thinking:  This girl has all the reasons in the world to be bitter and upset and frustrated.  For months now her entire world is in bed or in a hospital room.  She "lives" (the little of it) in between pain control medications.  Foreign people touch here everywhere.  Her entire rich life miniaturized to the confinement of her hospital bed.  Yet, she still finds happiness and joy in the small things.  She doesn't ask questions.  She doesn't speculate "what if".  She doesn't look at the grass on the other side of the fence.  She simply lives the moment and get the best out of it.  How simple.  And if it's so simple for her, with all the hardship she's going through, how come it's so difficult for the rest of us to do?