Mid week report - down and then up

My Spin For Kids campaign. Thank you.


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.