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.