Yet Another Location Update

We moved.  Same hospital (Egleston), same elevators (butterfly), 2nd floor - TICU, room 2208.
Why the move?  Because there's a better nurse-patients ratio on this floor - less patients per nurse.  Everybody agree that with Liam's multitude of issues, a closer attention is needed. 

Info

The hospital is Children Healthcare Of Atlanta at Egleston

1364 Clifton Road Northeast

Atlanta, GA 30322

Get Directions

(404) 785-6670

Feel free to email me directly for any questions:  dorfa1 at gmail dot com 

The OOWWWies continue

What's causing them?  Is it pain or just discomfort?  Something else?  We know that when Liam was admitted to the hospital a week ago, her kidneys were not well.  One possibility is that the the dis-functioned kidneys are the source of the problems.  A wide sort of symptoms are possible.  We will be patient - because there's no other choice.

One of us is staying at the hospital every night.  We almost forgot what family life feels like.  Last Night Liam fell asleep only around 2:30 AM (only to be awaken by the nurses at 5 for a procedure).  Naturally I didn't sleep either.  We watched Monday Night Football together, but I think she wanted to watch late night TV too.  Maybe that's why she moaned.  Anyway, Rachel came for her shift at 6:30 AM and I left straight to work - after a no-sleep night.

Liam was put on a special air mattress in hope to make her more comfortable and help with the bed soars.  The jury is still out.

remedy in action

I think it was proven by now that every time I'm writing about Liam's current condition, it immediately changes 180 degrees the minute I publish it.  So this is the intention.  Help me out, folks:
From being very lethargic and non-responsive, Liam was extremely restless the past 12-20 hours.  She got little to no sleep at all (same here, but never mind me), and she moans all the time - OOOWWWW,
OOOWWWW, OOOOWWWW.  She doesn't answer when asked what hurts.  Surprisingly, all her kidney-related numbers are improving every day.  So what's bothering her?  We have no idea at this point.  But, now that I wrote it down, it should change for the better, don't you think so?

Inviqtus
Last night I watched this excellent movie.  I won't spoil it for you.  Very recommended.  I just like to repeat one line from the movie (approximately):

Forgiveness is the greatest freedom

(or maybe it was:)

True freedom is forgiveness

Nelson Mandela

Last Saturday of 2009

I finally made it to the hospital after 3 days of being sick.  Liam is not too well today.  She's lethargic - well, actually sleeping - and she's a bit puffy.  I was told that in the few times when she does open her eyes, she's sort of non-responsive.  But today I was able to get a few good laughs out of her.

The functionality of her kidneys, which was nearly critical when we brought her in on Wednesday, is improving.  It's still not back to it's normal base line, but it's moving in the right direction.  So, if the numbers are improving, why is she so lethargic?  Hard to say.  One assumption (out of a few) is that she caught a cold.  But it's sldo important to remember that Liam's health is so fragile, that it coult be the UTI or her hypertension or who-knows-what.

Location update

Last night Liam was moved out from PICU and into the General Pediatric.  Butterfly elevators, 5th floor, 5-west, room 5212. 
She sleeps a lot.  Per Rachel, that's pretty much all she does.  The Dr's think - and I tend to agree - that that's her way of healing.  As usual, she's taking her time.

A small location correction

Liam is currently (Thursday, 6 PM) at PICU - 4th floor of the flower elevators - not as reported earlier.  My bad.  She might be moving tonight to a different floor.  If any of the readers intend to go to the hospital and visit them, don't rely on this information.  I'm completely unreliable.  You're on your own.... just kidding.  Seriously though, you may want to check with one of us before you go there just to be sure.

Back in the hospital

Last night Rachel took Liam back to the hospital.  The fact that she continued to be lethargic at home and also didn't gave enough urine, made us worry.  According to Rachel's report from this morning, in addition to a confirmed UTI, Liam's kidneys are not well.  The "bad" numbers are up too high.  But Rachel also said that since their admittance last night, Liam's condition is improving.  
I think that at the moment they're on the PICU floor (2nd floor, butterfly elevators, same floor she was in last two stays).  According to Rachel if the situation continue to improve they're likely to move to the 6th floor.  I'm sick in bed so I don't know much more than that at this moment.

My Christmas
On this day back in 1972, 73, or 74 (can't remember exactly) my mom did something no other Israeli-Jewish mom ever did before or since.  She took me in the middle of the night to visit the Church of the Nativity  in Bethlehem (Beit Lechem), where the main ceremony for Jesus's birthday takes place every year. 

We boarded  a cold, empty, old-style bus in downtown Jerusalem and took the 30-40 minutes ride to Bethlehem.  Now, you have to picture this:  a mom and her young son travel in the middle of a winter night to a foreign, some would say "enemy", city, alone in an old bus.  It's true that back in those days there was no Intifada yet and for a matter of fact the locals actually welcomed Israeli tourists-shoppers.  Still, it was NOT an Israeli city.

I remember the central square to be pretty empty.  Only a few soldiers patrolling.  I also remember that I was bored and suffered from this entire experience.  What do you want from me, Mom?  Why are we here?  Can we go home now?

When the priests came into the main hall of the church chanting Gregorian chant and holding HUGE candles, mom was in heaven.  She got sooooooo excited.
We eventually left (obviously) on the same cold, empty bus and made it back home.  I forgot the whole experience for years.

In retrospect today, I realize how special and unique was  Mom in her attempt to broaden my view of the world.  You see, she grew up in a very orthodox Jewish home.  Unlike me, who could care less, the Jewish values were really important to her until her last day (even though she didn't practice any of them on a daily basis after she left her home in England).  Yet, it was important enough for her to schlep me in the middle of the night and teach me about other cultures.  WHAT A LADY!!!!  Or, maybe she was just nuts....(this was the same lady who went fishing, drank whiskey and smoked cigars with the guys)
And that's my Christmas Eve experience I will hold onto for ever and the message  Mom gave me:  COEXIST.

Health
As mentioned in an earlier post, Liam was very uncomfortable last weekend.  It went from moaning to yelling to screaming.  She got no sleep.  From that conditioned in flipped a 180 degrees to where she became quite, sleepy, lethargic.
It's the worst when she's non-responsive.  Beside the elementary question marks - if something hurts, if she's comfortable, etc - there are the more "personal" questions:  are too hot or too cold, do you like this program on TV or that program, do you want us in the room or out of here, etc.  There are no answers.
Late yesterday Rachel took a few samples to the lab and a UTI was diagnosed - AGAIN!  This explains a lot.  But, the road is still long and uncertain.  First of all they need to find the antibiotics that work for her.  As Christmas is approaching, it's difficult to put all the pieces together - the Dr, the lab, urology department, etc.
A month ago we would have admitted her to the hospital.  Now though, we have a bunch of medical devices here that we can monitor her and know that she's not in critical condition.  This assessment can change, of course, any minute.

Health Plan #1
Yesterday was the first day we used the service of a home nurse.  This is something new Rachel arranged for in order to take the tremendous pressure off herself.  This is still a work in progress.

Health Plan #2
HOORAY for congress (or whoever) for passing a bill for the health care.  I'm not looking at it as a political issue, right-left, but as a personal issue.  Such a bill (or what it will eventually evolve into) will help with Liam's care for the long run.  Coming January we will be on a new insurance.  Every time we switch providers it a new war for Rachel.  It takes months if not years until they learn about Liam's situation and agree to participate in paying the astronomical bills.  A healthcare bill with the focus on HEALTH (rather than money) might insure that she will always be covered.
I grew up under a social system.  When I was 22 I was seriously injured.  It took me four years, 5-10 surgeries, and hundreds of physical therapies to get out of it (and I never completely recovered...still carrying with me some of the injuries still).  The cost to me:  $0.  I have an experience with both systems now.  I'm convinced that the perfect solution is neither system, but a hybrid of both.  I see the bill passed this week as only the first step in a long process - but an extremely important one.
(As a reminder, this is not a political discussion platform.  It is MY blog.)

that one good night....

...was followed by 2 very stressful ones.  Liam is not sleeping, she moans, she yells, she screams out of pain (but we're not sure where it hurts).  She also vomits more than the usual as of recent.  Back to the circle of madness.

much needed rest

A turn around or just a temp relief?
Last night, for the first time in many many many weeks, Liam slept well.  Rachel said this was her (Rachel's) best sleep in three months.  We're hopeful that she found her sleep rhythm back, but won't be surprised if she didn't and this is just a temporary rest.  Whatever it is, she needs the rest so it's good.

You're in the army now
Rachel and I both served in the Israeli defense forces.  When you're in the field, you have to guard the camp.  We took turns.  When your shift ends you go and kick the sleeping bag of the next guy, "hey, your turn" and you get ready in your mind to crawl into your own sleeping bag to catch a quick snooze.  Much in the same way Rachel and I share guarding duties over Liam.  The last few nights were split between us.  Each one of us would spend half the night with Liam (notice I said "spend" and not "sleep").  That way we can each get 3-4 hours of sleep in our own bed.

Liam vomits less in the last few days.

While this blog's main subject is Liam, the reader might be interested in the fact that we have other life too.  Meitav needs care and attention too; I have to go to work (sometimes after long sleepless nights); the house needs to be maintained; life, you know.

When I think back on all the crap I learned in high school It’s a wonder I can think at all
When I was in school I hated biology.  I played football (eh, soccer, for some of you) while I was supposed to be in the classroom.  Apparently scoring goals worked better for me than learning about osmosis etc.  But now the past is coming to haunt me, so it seems.

Meitav had a science project at school.  It's about the living cell, mitochondria, chromosomes, and all these other things I never encountered on the football field.  The students were allowed to use their imagination and creativity to create a project that represents the subject matter.  Meitav came up with a really unique idea:  a cell fashion show.

She wrote the play, got the neighbors to participate, and filmed the whole thing.  There was one tiny problem:  she did it all with her small camera - not a video camera.  Then she wanted me, out of all people, imagine that, to put it all together.  Why me?  Because I'm "good with computers" and the project is due.

Now, I never before edited any video.  Let alone putting 30 different pieces of it together.  So this is my first ever project (and I guess it can be considered as closing the circle on the biology classes I missed years ago).  We put the video on youtube.  Click here to watch it.

What's an owwwie?

An owie could be a real one - where she doesn't feel good.  It could range from nausea to discomfort to real pain.  There's no telling.  And it could also means "I'm hot and sweaty" or "I need a new diaper" or "I don't like what's on TV".  At times Liam would express herself in clear language, yet at other times OWWW is the word.  And you just don't know what's wrong and how to attempt to fix it.

Now, it's important to note that in the case where she's complaining all night long, as expressed in the previous post, we really DON'T KNOW what it wrong.  She complains about her belly and indeed it's growling, but that's all we think-guess.  And neither do we nor do the Dr's know how to fix it.

Needless to say we're getting little to none sleep AT ALL.  It's extremely stressful here.

OWWWWWWW

Liam starts at 6-7 PM and it lasts all night long, non-stop:

OWWWWW, MOMMY, IT HURTS, OWWWWWWWWWW, OWWWWWWWWWW, I DON'T FEEL WELL, OWWWWWWWW, MOMMY, OWWWWWWWWWW, IT HURTS

Liam, what hurts?



OWWWWW, MOMMY, IT HURTS, OWWWWWWWWWW, OWWWWWWWWWW, I DON'T FEEL WELL, OWWWWWWWW, MOMMY, OWWWWWWWWWW, IT HURTS
OWWWWW, MOMMY, IT HURTS, OWWWWWWWWWW, OWWWWWWWWWW, I DON'T FEEL WELL, OWWWWWWWW, MOMMY, OWWWWWWWWWW, IT HURTS
OWWWWW, MOMMY, IT HURTS, OWWWWWWWWWW, OWWWWWWWWWW, I DON'T FEEL WELL, OWWWWWWWW, MOMMY, OWWWWWWWWWW, IT HURTS
OWWWWW, MOMMY, IT HURTS, OWWWWWWWWWW, OWWWWWWWWWW, I DON'T FEEL WELL, OWWWWWWWW, MOMMY, OWWWWWWWWWW, IT HURTS, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW, OWWWWWWWWWW

The last 48 hours were extremely stressful here.  Liam cannot fall asleep at night.  She's  moaning "owwww, owwww, owwww", "Eema, Eama, Eama" nonstop all night long.  We didn't find a way to calm her down.  In addition she's vomiting a lot, which puts a question mark on how effective is her hydration, a critical factor regarding the functionality of her kidneys. But regardless of the medical observation, it's just extremely difficult these days. 

Yesterday was a big day for Meitav - three performances of the Nut Cracker.  Rachel spent the day helping her backstage.  I had a list of assignments, which I felt I can accomplish next to Liam's bed:  paying bills online, deposit checks electronically, helping Meitav with a computer-based project, preparing a hospital-compatible computer for Rachel.  But Liam decided otherwise.  She vomited plenty and moaned most of the time.  I was stressed out.  Luckily, I had a good friend helping me.

But wait, that was not all.  It was the one of coldest day in Atlanta this year.  Toward noon-ish I discovered that our furnace is not working.  Now, here's a reminder:  as I mentioned in earlier posts, Liam's body temperature often deeps into dangerous lows (95's and even below).  So I'm here with Liam vomiting, the heater is out of service, Liam's body temp is vulnerable, and Rachel is away.  The most fun one can get!!!  Luckily I was able to get a hold of a service man (on Saturday) and turn on our backup heating devices.  When Rachel returned home it was a huge relief.  All I wanted to do is go to sleep.  But I still wanted to attend Meitav's show, which I did.  It was GREAT!!!  She grows from one year to the next, becomes more professional, more accurate in her moves and her posture, more mature, prettier.  I'm a football guy.  Ballet is not really one of my "sports".  But her performance on the stage always make my eyes watery.

Last night again Liam didn't sleep well.  Rachel spent the night with her - mainly because she felt sorry for me.  Today (Sunday), we're all just exhausted from the past few days.  I was gonna spend the afternoon with my beer buddies, but it simply didn't work out.  One of us has to be on high alert next to Liam at all times.  On a positive note, Liam had a relatively good day. 

We're soooooooooooo tired.

strange and stressful situation

The good news is that Liam is back to her old self.  She talks, answers clearly to question we ask her, listens to stories, smiles a lot, jokes, etc.  The not-so-great news is that in the last few nights (and days) we hardly get any sleep.  As night falls she becomes restless.  Her belly makes noises and she vomits.  But worse: she constantly moans and complains "Eema, Eema, Eema...." "owww, it hurts...."  all night long.  Non-stop.  We have no idea what it is and how to help her.  I don't have the vocabulary to describe how tired and stressful we are.  Strangely, the next morning Liam is happy again - despite not getting enough rest.
Hoping for something positive to happen and to get some rest.

No really, home sweet home

No sarcasm.

Reading through the posts of the past few weeks you probably noticed a pattern:  Liam falls very sick and then somehow, some way, she's climbing out of the hole.  This is, of course, easier said than done.  And it's especially difficult to acknowledge when she's still non-responsive, not breathing well, etc.  Well, today, after nearly two weeks of "darkness", Liam climbed out of the hole again.  She's more awake and aware today, she jokes, she smiles, and most importantly, the sparkle in her eyes returned. 
It is too early to celebrate.  The high blood pressure, too-shallow breathing, occasional sleepiness, and vomiting - are all still here.  Today we're just enjoying the moment. 


Here are some of the difficult decisions we face every day:

Do we feed her continuously or do we give her breaks?
If the former, that might cause her discomfort (and maybe more vomiting); if the latter, she might lose weight plus the kidneys may not be fully hydrated.

Should she get Caffeine (beyond the prescribed amount)?
If not, her breathing might suffer; if she gets it, she might not sleep well (or sleep at all).

Should she get pain killers, which, and how much?
On the one hand, we don't want her to suffer.  But on the other hand, the medication may make her sleepy and suppress her breathing.

Should we bathe her or leave her alone?
She's so fragile that bathing her might be traumatic.

These are just a few....there are more.

"Home sweet home"

The above title is a lame attempt to be sarcastic.  
Unfortunately, coming home The night between Friday-Saturday was extremely rough.  Liam vomited many times and gagged many more.  Her breathing was not good.  We had to attend to her all night long and do many rounds of laundry in between.  So, as sweet as home is, it is far from easy.  We have to play  the roles of Dr's, the nurses, the janitors, and many other roles - as well as parents.  And we have to make difficult decisions:  Is she too sick to stay home?  Is she breathing enough or do the monitor gives a bad read?  Is her blood pressure too high?  This is just a sample of the many questions we face during the day - and most critically, during the night. 

Our mini-hospital room now includes:
An oxygen machine
The feed pump
A pulse and oxygen saturation level monitor
A suction machine (to help clean her mouth from vomit)

Meitav sleeps in our bed while one of us "sleeps" (yeah, right) in the room with Liam.

Liam's home again

Not because her condition improved so much and more because we  can do at home the same things they do in the hospital.  We came home with a few more monitors and healthcare devices and a few more medications.  Hoping for stability and improvement. 

no news

Liam is pretty stable as far as breathing, blood pressure, etc.  She is not as lethargic as before, but she's still pretty sleepy and have not talked a single word in a week now.  She is a bit more awake and even shows some emotions - moans when they do stuff to her and laughs occasionally.  All good signs.  The Dr's are scratching their heads as to what the problem is and how to help her out of it.