Dear Diary

Sunday, 4-11-2010
This really started Saturday.  On Sat Liam had a pretty good day.  In a rare occurrence both Rachel and I did leisure activities at the same time while a nurse stayed with Liam in the house.  Liam had a restful day.  That night, however, and into Sunday, things changed sharply.  She was full of gas or something.  She was in pain and none of the medicines she received helped any.  And if she did calm down for a few minutes here or there or if I was able to relieve Rachel for a brief sleep, just then I received an emergency call from work (I was on call).  Bottom line:  all three of us were up most of the night.

So here we are yet again:  Liam is in pain and discomfort.  How do you help her as a parent?  You do the obvious - give any medicine available and permitted; you try to comfort her; you try to get her attention on something else - a story, a movie; you try to get her to sleep.  And sometimes there's nothing at all you can do except tell her how sorry you are that she's in pain.  Meanwhile, life goes on.  People are coming in and out, we eat our meals, we fold laundry (the never ending activity) - all while she's moaning.  A terrible reality.

The pains are explained by the side effects of this medication (which I can't remember the name of).  The last time Liam was hospitalized, she was constipated.  One of the suggested solution was this antibiotic, which has side effects of loose stool, but also gas and stomach ache.  Well, stool was moving alright, but her discomfort was very disturbing.  The GI Dr said there's nothing they can do - just wait for it to subside.  But what if she's wrong?  And what if there is something else there?  What do you do - going to the ER or staying at home?  This is a returning question.  Meanwhile, Liam's in pain.  I'M NOT SURE i'M DESCRIBING THE SITUATION VERY WELL.  Maybe these are just words on the screen here.  There's no way to convey what it's like except for being here every hour, every minute, every second, every OOOOWWWW.

Sometimes around 1 pm she finally fell into a good sleep....that lasted only an hour or so.  Then her suffering continued all afternoon long and into the evening.  At 7 PM she finally fell into a good sleep - a bit too late - I missed the Masters in between her suffering and the emergency calls from work.  If it wasn't so annoying, it would have been funny:  every time I finally sat down to relax, ring-ring, they're calling from work again.  How do they always know?
Alright, what am I blah-blah-blah-ing about?  Time is precious.  I better get some rest before either Liam wakes up or they call again.  We're soooooo tired.  All we want is to slee......DAMN, can't even complete the sentence.  Liam woke up after only one hour and continued OOOWW, OOOOWWWW OOOOOOOOWWWWWWW into the night.  Is all of this really just from side effect of this medication?  (Eryped, that's the medication.  See, I remembered...NOT....I went and looked in the medicine stash...)  Hard to believe.


Monday, 4-12
This continued pretty much throughout the day.  Around noon Rachel took Liam to the hospital for an x-ray of the J-tube.  They were supposed to be there anyway for dialysis, but her continued suffering required more attention. 
After the x-ray they went up to dialysis.  They were told that the GI people will meet them there and report the results of the x-ray. 

The J-tube turned out to be ok.  The problem arose when a GI resident told Rachel that he thinks it's nothing serious and they should go home.  He didn't even show up to discuss it.  It was over the phone via a 3rd person.  Rachel thought she was going crazy.  It's hard enough to care for Liam at such difficult times, the last thing you need is a Dr with an attitude problem.  This is not the first time Drs from the GI department are giving us grief.  They don't show up, they don't return calls, they don't take responsibility.  Something stinks there.
Rachel said she's not leaving the hospital with Liam in so much pain.  But with nobody else to talk to, they were back home after several hours.  Very frustrating.

Back home, Liam ate something light and fell asleep.  Let's see how long she will sleep this time. 
Later that night (still Monday):  she stayed asleep only for 1-2 hours.  The rest of the night was half-and-half.  Better than last night, but still a bit OOOOWWWWie.

Tuesday, 4-13:
Liam's asleep most of the day.  Rachel talked with a senior GI Dr, who said to her:  "I'm surprised Liam is not hospitalized....she has pancreatitis".  To which Rachel replied "I'm surprised too...how should I know if nobody tells us????????"  Another dropped ball by the GI folks.
Towards evening Liam showed more and more discomfort.  It was sort of clear that with the GI's comment and Liam's condition, we will arrive at the hospital that night.  Still, what if she falls into a deep sleep at home?  Why take her in?
(And how does Meitav, who works hard all day at school and dance, feels coming homes late in the evening and into the moaning of Liam?  It can't be easy.)

I told Rachel I'm heading to bed.  Wake me up when you need me. 
Deep into the night I woke up.  Everything was quite.  Too quite.  No moaning, no oxygen machine, no monitor, no Toad-and-Frog on the CD.  I understood:  they left for the hospital without waking me up.  (It took me years to train Rachel for this moment.  Finally I see the results of all this hard work.  She understands.  I need the rest for the weekend sporting events on the tube.  I like her.  I think I'll keep her.)

At the hospital, it's the same old story.  They spent all night long in the ER.  x-ray this, test that.  At some point, Liam passed some GOOD gas (I thought I'm the only one in the family able to do this...) and that cracked her up.  Then she pooped.  Then she felt into a DEEP sleep.  They moved her, they x-rayed her, they poked her with a needle.  No reaction from her.  Dead asleep.

They discovered a urinary tract infection.  Yes, again.  This is something that is almost impossible to prevent - especially with Liam.  Here's why:
A.  She does not pee on her own.
B.  Often cathing her may not be a 100% clean, even if we keep everything sterile.
C.  She's in diapers (so even when she does pee on her own, all the germs are still there).
D.  She's a girl (boys in diapers also suffer from UTI, but not as often).
E.  Weak immune system.

So the UTI is expected to return in the future.  It's an unfortunate, cruel, unfair reality.


Wednesday, 4-14
So that's it, we're back in the hospital, room 2214.  This is a nice, big room.  My [bad] instinct kicked in right away.  I asked for a big screen TV and a beer fridge.  What?  The worst I can get is a NO.

Here's the story with the pancreatitis, as much as I understand it (which is not much....unfortunately, I'm your only source of information):  the "bad numbers", which indicate of infection to the pancreas, are fluctuating.  Within a few days we heard yes she has the infection; no she doesn't have it.  Also, if she does have it, there's nothing to do except for letting the body heal itself - again, to my lame understanding.

As for the UTI, they discovered two types of bacteria so she will get plenty of antibiotics soon.

It might be a new reality that we will have to check in-and-out of the hospital every so often from now on.

On Wednesday night everybody slept well - finally. Even the cat, who normally wakes me up between 3-4, slept in - until 4:45.

But other than all of the above, everything is really a-ok.