out of ICU

Liam was moved out of ICU yesterday afternoon - not so much because of an improvement, but due to the fact that she didn't belong there in the first place.  She's breathing on her own and the blood pressure and temperature stabalized.  She's back on the 2nd floor of the old building (butterfly elevators), room 2211.

Last night she held her eyes open for quite a long time and answered one of my many laim jokes with a good-Liam-style smile as if to say "I'm here.....I hear everything....I need more time....be patient".

Back in ICU

During Friday night Liam was breathing strange.  We laid awake in bed,
listened to her throgh the monitor, thinking the worst thoughts.
Around 4 am we changed her.  She has a bad case of diarrhea (changing a diaper on a 14-years old is never fun.  Let alone with diarrhea.  I'll leave it at that).  We then took blood
pressure and it was alarmingly low.  Shall we go to the ER?  We decided to wait.  I got into Meitav's bed; Rachel started cleaning the house (the time was 5 am).  Periodically she checked Liam's blood pressure which began to bounce back.

Her body temp, which just yesterday was near 38C (104F), dropped down to 34.5C (94.1F)
- dangerously low.  We decided to take her in.  The time was 7 am then.  We called a friend to come stay with Meitav and drove to the ER.
By the time we made it there, both her blood pressure and body temps bounced back to normal.  Go figure.  She remained stable for the rest of the day.  A lot of vomiting early on, which later subsided.

The worst part of it all, though, was the fact that Liam didn't seem to care.  Since the G-tube surgery last week she's very lethargic.  Dangerously so. 
She never't protested or complained or whined.  She was just disturbingly quite.  We're cleaning her bottom (which is never easy and never pleasant for her), clean her vomit, turning her this way and that way, the paramedics are sticking her - and in all of that Liam is very very quite.  Almost non-responsive.   That's the worst by far.  When she finally whines or moans, we're almost happy.  A sign of life.  This is, after all, Liam, who usually lets us know right away when she doesn't like something. 

Is she in a life threatening situation?  Doesn't look like it.  Her vital signs are good.  The reason we're in ICU is due to the lethargic situation. 

 

How good is it to be home?

Leaving the hospital is good.   And it's definitely good to be together as a family at home again - for the first time in months.  At the same time, Liam was released from the hospital not because she got so much better there, but because she reached a plateau.  We have to try feeding her via the G-tube for several weeks to see if it's working for her.  By "working" I mean that she'd be able to sustain the liquid food.  If so, then we have a winner; if not, then we have to go back for more exploration.

Liam is very sleepy in the last few days.  She was fed via an NJ-tube (nose to intestine - bypassing the stomach).  With it, we have little to no vomiting.  The plan was to leave the NJ-tube intact even after the installation of the G-tube and to gradually shift her feeding from the NJ to the G.  But, during the G-tube procedure the surgery crew made a mistake and pulled the NJ out.  Nobody realized it until Liam was back with us and awake.  With the NJ out it was decided to try feeding her via the G, very gradually.

It went ok during the day - again, Liam was uncharacteristically sleepy.  At evening feeding reached 40 ML, the minimal amount enough to sustain Liam.  At 8 PM we were released.  As soon as we got home Liam started vomiting or rather gagging badly.  It continued for several hours until we turned her on her side - with the intention that the vomit wouldn't choke her.  She fell asleep and surprisingly slept most of the night peacefully.  As soon as she woke up, the gagging/vomiting resumed.

The same pattern continued today - Thanksgiving day.  We also detected high fever.  Is she sick a "normal" sickness or it it related to the rest of the whatever-it-is?  Too difficult to know.  Hopefully, the next few days will tell us more.  So it's a bit stressful here, to say the least.  Just hoping for a quite and peaceful night.

I'm not the kind of guy who normally say "this year I'm thankful for so-and-so" (although I do say thank you when somebody puts a beer in my hand and football on the screen).  I think that thanks and appreciations are a private matter and are expressed in the heart.  However, this year I'm diverting from my habit and giving a public thank: I'm thanking the medical staff who worked well with us to keep her alive; I'm thanking all the support from family and friends; I'm thankful to Liam that she's still with us.

Liam's home

But not without problems yet.  We're still trying to figure out the proper way to feed her and the right amount (through the g-tube).  At the time of writing these words we just returned from the hospital, where she didn't vomit or even gag.  Now she's gagging.  We're about to have a fun night.  More details soon.

G-tube

A feeding tube called G-tube was installed in Liam today through a surgery.  The surgery went well.  How well Liam will recover, how well the tube will operate, and how well it will change the quality of her life - all remain to be seen.

And the secret of how to get better is....

Sorry, don't look for the answer here.  This post is my weekly vent.


Rest?  Here?  You've gotta be kidding me
Liam was moved from the ICU to the pulmonary floor (which has a fancy name).  Anyway, the big difference from ICU and a regular floor is that on the former they pretty much leave the patients alone, unless thay have to treat them (which is usually the case, since it's ICU).  But for somebody like Liam, who wasn't in life threatening situation the last few days in ICU, they didn't bother her.  That's not the case  on the current floor.  People coming in and out all day long, and worst, all night long:  Dr's, residents, nurses, janitors - it's just never ending.  The problem with that is that they don't let Liam rest.  She needs the sleep more than anything.  But it's just impossible to get a simple good rest here.  

Last night I stayed with Liam.  For some odd reason (which I'll explain later in the post), they thought she's having a surgery today (Friday, 11-20-09).  So an unbelievable  pilgrimage of  who-knows-what started coming in-nd-out all night long.  These professionals come in at 10 and 11 PM and 1 AM as if it's the middle of the day.  They have absolutely no respect for Liam or us.  All they want is to get the info they're after.  After a while you start asking yourself "is this the best way to get somebody better?"  This is not new to us.  We've been in this story before.  I just get agitated again every time we're here.  There's absolutely no coordination.  Each Dr does his/her own little thing.  Nobody's looking at the big picture.  Nobody looks after the best interest of the patient.

GI Joe
It's been months now that we're trying to get a hold of a GI (gastroenterologist) Dr.  After all, Liam is vomiting non-stop and that's their specialty.  But we were unsuccessful and grew extremely frustrated.  Is it not enough to worry about Liam's well being?  Do we need to stress over finding a Dr in this hospital?  Somebody who'd take responsibility?  On paper, Liam has a GI Dr that knows about her.  But a poor management on their side caused miscommunication and for and for months now they simply haven't shown up.  Meanwhile, Liam is vomiting. 

Well, today finally they showed up.  Now that the pulmonary people said "Liam is fine from our standpoint", they moved us to the responsibility of GI.  What a great way to get their attention!!!  Anyway, this Dr has a theory regarding the vomiting.  He needs to study Liam now.  Nothing is likely to happen over the weekend, but we're hopeful for a fresh start.

Out of ICU

Liam left ICU last night into the pulmonology floor.  A few notable things:

• They may have given her too much caffeine (sounds familiar) in ICU.  She didn't get a good night sleep now in 5 days.  Only small cat naps here and there.  Undersnadably, she's very agitated.
• Same problems reported earlier still exist:  vomiting and high blood pressure.
• When she's not agitated, Liam is very well.  That is, she speaks well, she's alert, she jokes around.  It's almost the good-old Liam from before the early September hospitalization (from which everything staretd rolling downhill).
• According to Rachel moving from ICU to the new floor is like moving from the Ritz-Carleton to Motel-6.
  

Rachel and Liam on TV

Discussing the failed 911 system in Atlanta.  It was taken between the major seizure hospitalization and the current one.  To view click here.

Time to think and plan ahead

Vomiting continues and the high blood pressure returned.  But otherwise Liam is pretty well.  She's awake, alert, her spirit is high.  Despite not being in a life threatening situation any more, we're still in ICU.  Maybe [or hopefully] due to the intensive vomiting.  Now that the rest of the issues are under control, give or take, it's really time to focus on the vomiting - a more than a year old problem.

It is also time for Rachel and I to have one of the most difficult talks of our life.  12 days ago Liam almost said goodbye for good.  Even though she's much better now, we know that the critical situation could return any moment.  It is very possible that sometimes in the future we will have to make some difficult decisions:  put her on a 24/7 ventilator or not?  Keep her around no matter what or let her go at some point, and when?   These are not typical things parents normally discuss about their kids.  But, it's important to have this conversation in a calm time when we can think clearly.  That way if the situation arises, we will be better prepared - hopefully. 

Hebrew blog

BTW, for the blog in Hebrew, click here.  The blogs are not exactly parallel.  The Hebrew one started a lot earlier.  The "pure news" are the same, but not necessarily everything around it.

Ups and downs - again

Yesterday, Friday, was a very special day.  Liam's breathing tube was pulled out.  During the rest of the day she came back to be her old self.  The Liam we know and love:  smiling, joking, loving.  With her voice still coarse due to the scar the tube left in her throat, she couldn't wait and started taking right away - joking with everybody.  She even sat in her wheelchair.  Just 10 days ago she almost left us. Wow, exciting. 

Liam is moving her head, even her body, her eyes, and she speaks.  All the things, that we take for granted and never think about, are signs of life for her.

But (and how I hate this word, "but"...it's so negative), she didn't have such a good night.  Gaging and vomiting every 20-30 minutes.  She didn't get any rest.  Interestingly, when dawn arrived, I flipped her on her back (to her request) and turned the TV on.  The minute she focused on it the moaning and gagging stopped.
Anyway, the vomiting is nothing new.  She's suffering from it now for over a year.  But the intensity of repeating all night long is sort of new for the last few months.  So the vomiting remain a question that needs addressing.  While it was always there, it was sort of put aside with more urgent things on the table: high blood pressure, seizures, the kidneys, the shunt, the breathing.

How did we - and especially Liam - made it through the last 2 weeks?  Several factors:

1.  Liam's fighting spirit.  She never gives up.  She should be an inspiration for the rest of us.
2.  Medical care and science:  Dr's paid attention to the right things at the right time; nurses provided excellent care. 
3.  A lot of patience by everybody - including Liam.
4.  Love.  The love that everybody poured on Liam and on us.  The positive atmosphere that was here even at the darkest moments.

While we're all happy to see her back, she's still not out of the woods.  The vomiting finally came to the top of the priority list. 

EXTUBATED!

Just a quick note to share that Liam is now breathing on her own for the last 48 hours.  Earlier this morning she was extubated - that is, the breathing tube, which went through her mouth and throat and into the lungs and which caused her to gag constantly, was finally removed.  BIG news for a girl who just 10 days ago was non-responsive.  More later.....mmmmmaybe.

you take cream and sugar with your coffee, Liam?

Coffee

On Tuesday (11/10) Liam was taken off the pain medication she was on (I forget the name....beer does it for me, though).  The pain medication made her sleepy and the assumption is that it also may suppress her brain from breathing.  Anyway, the Ritalin they gave her in hope it would stimulate the brain, didn't work.  So they moved to.....caffeine.  The amount of 4 cups, no less.  It is too early to know if this is indeed a good stimulating agent, but meanwhile Liam breathed all on her own today.  The ventilator was there ready to intervene if she's not breathing, but she did the job all by herself all day long.  More importantly, even when she took naps (which is usually when her brain slows down and forgets to breathe).  Unfortunately, when she's awake like this and without the pain medication, the tube in her throat gives her a strong gag reflex.  I guess she'll be suffering until the intubation is out.  Poor baby.


Heroes

My biggest heroes in this saga are my 3 girls.

Liam - for the way she keeps fighting, never giving up (which she learned from me, which I learned from Joe Montana).  My English is not good enough to find the words that describe her.  Laying there hooked to all the different machines; hoses and pipes are coming and going from every direction; the medical staff poks her, turns her, cleans her; she's in pain, she vomits, she's struggling to breathe; YET, SHE KEEPS ON GOING.  SHE REFUSES TO GIVE UP.

Rachel - here really I'm at a loss.  I have no words.  She lives in the hospital now for nearly 2 months - on and off.  Her pajama and toothbrush are there.  It's her home away from home.  She holds the whole thing together.

Meitav - might be the biggest hero here.  While the rest of us have the tools, she's just a young teen.  To her it's all new experience.  And minus a few minor breakdowns here and there, she takes it all very well.  She understands that Rachel and mine's first priority these days is Liam.  It must be really tough on her, but she's coping well.  I'm really proud of her and wonder what she'll take from this experience for life.

Priceless smiles

When I arrived this afternoon to the hospital Liam was breathing on her own.  She was wide awake.  Her color was good and her eyes were very lively.  She was still very quite.  Wait, could it be because she has a huge tube shoved down her throat??  Anyway, while it's always good to see her like that, nobody knows yet if she's climbing out of the hole.  The next few days may tell us more.
Rachel put on a CD one of Liam's favorite songs.  It's a very up-beat song.  I exploited the fact that Liam can't complain and added my excellent voice (only by my own standards) to the tune.  Liam, through all the shit she's in - drugs, tubes, illness - smiled at me widely.  PRICELESS.  This baby of mine is so special.  How, when in such a dire situation, can she touch those arounf her so profoundly?  How easily can she make us smile!  Amazing, simply amazing.

Breathe, Liam, will you?

Liam currently doesn't breathe enough.  The problem is more severe when she's asleep.  A typical person would breathe 12-20 times a minute when they're asleep.  Liam is on a rate of 4-5.  The Dr. said that last night he counted her on 1-2 times a minute!!!  Dangerously too few breaths.  That's the reason for the intubation.  When a person breathe so shallowly, you would expect the CO2 level in their blood to go through the roof.  Surprisingly and strangely, Liam's levels are fine despite hardly taking any oxygen in.  Go figure. 
But the intubation is not a long term solution.  First of all, it's going through Liam's mouth and throat to the lungs.  Obviously she can't speak or eat as long as it is there.  Secondly, there's a risk of infection.  So the medical staff has to come up with alternative options within the next few days.

Liam was never a good breather at night.  But this is way too low.  Her brain is not commanding her to breathe, for some reason.  So what do you do?  There are several options - but there's no guarantee that any one of them would work:

* Stimulation drugs:  The Dr's already started her on a low doze of Ritalin.  The hope is that it'd stimulate the brain enough so she breathes more.  It takes time to kick in.
* Tracheotomy (trache):  We're learning more about these days.

As I said, either way is not guaranteed to give better results.  Plus, they bring up other questions:
- Will Liam be able to sleep restfully with the Ritalin and still breathe well?
- Would the trache improve her life back to where she was?

And beyond those question, if we look at the big picture again, every time something was "fixed", something new popped up.   Makes us wonder:  if the breathing problem is addressed in a way that Liam can live, what would be the next problem?

The big picture

The big picture is that after so long of relatively good health, Liam's condition clearly deteriorated in the last year.  It started with nightly vomiting.  In early September 2009, when we learned about the high blood pressure and the kidneys, we realized that Liam is very sick.  This was new to us.  Despite her many disabilities and limitations (and even health issues), we always considered her as a healthy child.  Following these findings in early September, additional problems were discovered - which I already mentioned in the blog:  a shunt problems (which was corrected through a surgery in October 2009); respiratory issues, which we knew about before, but have worsened; low blood pressure as oppose to the high blood pressure which was discovered a few months ago (in other words, blood pressure fluctuation); seizures.
In light of all the above the question that we keep asking ourselves is if Liam's body is shutting down.  Is it too tired?  Is the brain too damaged to control the body?
In a recent conversation with her neurologist, she said that considering the way Liam's brain was at berth, considering 7 months of seizures, considering all the surgeries - it's quite amazing the things that  Liam was ABLE to do:  drive her wheelchair, feed herself, go to school, enjoy life.  Again we're asking ourselves if we saw the best of her.  Not that the future was any clearer before, but now the fog is much heavier.

Angels

We're blessed enough to have a loving family and large caring community around us.  People are making meals for us; others are taking Meitav to-from her dance classes; some come to the hospital to be with us ;others are just support. 
It would have been a lot harder without the angels.

Week of 11-2-09

* Monday - we said already (see below) - entering ICU.
* Tuesday - mostly tests.  Liam is not well.
* Wednesday - I went to work.  Talked to Rachel (who stayed in the ICU with Liam) at around 8:30.  The night was quite, more or less.  An hour later I'm getting another call COME IMMEDIATELY TO THE HOSPITAL.  I didn't ask any questions.  Got in my car and drove into town.  But on the way I was imagining the worst and started sobbing.  It turned out that imagining the worst was not that far from the truth.  Liam was in dire condition.  She was notresponding, her color was gray, her eyes were lifeless, her breathing needed help - URGENTLY.  Many friends and family gathered to support us and to maybe say goodbye to Liam.  But Liam wasn't ready to leave yet.  Somehow she regrouped.  Later that day, after the Dr's explained the situation to us and asked for our opinion, she was intubated (the spell checker complains that it's not a word...but google is happy with it...oh well).  Anyway, we hope that this will perk her up.
* Thursday - she's stable.
* Friday - surprise!  The Dr's say she's breathing on her own so they want to start wean her off the breathing machine.  We're all too happy.  Just two days ago she was going away and here she is doing so much better.  Or does she???? 
* Friday night and Saturday AM:  When she's awake, Liam breathes well enough to be off the machine.  But when she's asleep, her breathing slows down considerably.  She breathes on the average 5 times a minute, where a normal person would breathe 12-20 times per minute.  At the same time, he said, her CO2 levels in the blood is ok (which is puzzling a bit).  Anyway, what do you do?
Do you take her off the ventilator to take a risk and maybe put her back on it in a day or two?  Or, do you leave the big tube inserted in her mouth through the throat?

I told the Dr that looking back at Liam's history, specifically the last year, it seems to me that she's on a down slope.  The Dr's say that her kidneys are well enough, so is her blood pressure.  Her UTI is hopefully treatable.  The shunt was operated on and is corrected now.  If all the suspected reasons can be explained by the Dr's, then what is it?  What causes Liam to breathe so poorly at night?  That is the big question in my mind.  I may be wrong, but it's my guess/feeling that her brain is slowly shutting down.  The fact that she has siezures for the first time in 13 years is a big clue that something is wrong with the brain's function, I think.

To be continued....

Brief history

The early days

Liam was born 3-1995 at Athens Regional.  From the very beginning she was suffering with seizures - as many as 60-100 a day.  At 3 days old, she was transferred in a special ambulance to Egleston Children Hospital in Atlanta - coincidentally just down the road from the new old-house that we bought.
What happened is that she was born with a malformation of the left hemisphere of her brain.  That part not only could not do its job, but produced the seizures.  No medication or therapy was working.  We saw our little girl getting fried right before our eyes - every minute, every hour, every day.  

At 7 months old, she went through an extensive brain surgery where they sort of disconnected that part of the brain.  The seizures stopped instantly.  But, the damage was already done. The good side of her brain was attacked by the seizures all this time.


In the next 3 years Liam had 3 more surgeries to address hydrocephalus problems.  First a shunt was installed to drain fluids from her brain to her stomach.  A second shunt was installed a year or so later.  Then there was an adjustment surgery (fixing valves, plumbing).




The next 8-9 years


Liam always had issues, but in general was a healthy child for the next 8-9 years - though severely disabled both physically and academically.  But, we adapted a way of life as a family.  She went to school, we took vacations, it was all pretty close normal - despite the many limitations and special circumstances.


About 5 years ago Liam had a major orthopedic surgery.  They fixed her hips, her feet were positioned in the right orientation, and there was something else I can't recall (will update the blog at a later time, when my own brain returns).  For 3 weeks she was in a full body cast.  Also, she had pneumonia immediately after the surgery.  It wasn't fun.


A year later She had another orthopedic surgery.  This time they inserted a metal rod through her spine to address her severe scoliosis.  


Despite all these procedures, Liam went to school on a pretty regular basis.  She always had her therapies:  hypo, swimming, occupational.  She's always a happy child.


One other item, which is worth mentioning, is that Liam always had a neurological sleep apnea.  This is where her brain would not command the body to breathe, I think.... For years now we put her on supplemental oxygen at night.



The last year (late 2008 to 2009)



In the last year things started to be a bit shaky.  She started vomiting not immediately after meals, but late at night or early morning.  This was going on for many months (and still does, to some degree).


In summer of 2009 Liam was diagnosed with high blood pressure.  WOW, that was new to us.  We knew about the orthopedic and other problems, but high blood pressure?  Where did that come from?
Strangely, it was not easy to get the Dr's attention about it. We were under a lot of pressure.


What we also started observing around that time is something that looked like seizures - again.  But we didn't call them seizures because I think we refused to believe.



Lately

In September 2009 Liam was finally admitted to Egleston yet again.  By that time a problem was discovered with the function of her kidneys.  Her kidneys were discovered to function at 30%.  Not great, to say the least, yet not critical.  It was determined that with the right medication and diet, her kidneys can still do the job.  After 3-4 days in the hospital we were sent home with new blood pressure control and kidneys medications.

One Sunday night in early October 2009 Liam suffered a major seizure while sleeping.  Meitav alerted us to something going on.  We found her seizing and stop breathing.  We called 911.  Were put on hold (!!!!) for 7 minutes.  The paramedics eventually showed up 20 minutes later.  We were just lucky she survived. 
This time we were in the hospital for nearly 3 weeks.  In addition to the kidneys and the high blood pressure, two more problems were discovered:  urinary tract infection (UTI) and possible problem with one of her shunts.  It's important to mention that in addition to all of the above, Liam is always vomiting in the past year.
Her condition in the hospital first improved, but then deteriorated.  They were shooting in the dark.  Eventually we were sent home not because she got better, but because they were hoping home will get her better.

At first it seemed that this was the right move as Liam got a bit better.  But as the week progressed, she became sleepier and sleepier.  Lethargic.  Then came Monday, 10-2-09.  Liam fell asleep while Rachel gave her a shower.  Rachel took her blood pressure, and, surprise surprise:  it's usually either too high or normal.  But this time it was low.  Dangerously low.  They went to the ER and after several hours made it to the ICU.