Madison’s condition worsens

The results of the latest ultrasound were not encouraging.  The fluid continues to accumulate in the spaces in her brain and at a rate much faster than anyone would have thought.  What this means is that there must be an obstruction, probably a blood clot, that is keeping the fluid from draining normally.  At 17 days old, she is showing similar fluid accumulation for children with similar issues that are twice her age.


The only logical next step is to move forward with the neurosurgery to implant the shunt.  In all likelihood, Madison will need a shunt in place for the rest of her life to help her drain the fluid that is not draining on its own.  Sometime in the next 7 days, she will be transported to Presbyterian St. Luke’s Hospital (PSL) where the more severe neonatal cases are housed.  The surgery will be performed there, and she will spend the rest of her NICU stay at that location away from her brother and sister.


The ultrasound also showed some suspicious areas in the brain that could have been damaged at a point earlier in the pregnancy.  These areas also showed up on the last ultrasound, but it was unclear whether the image was definitive or not.  The area of concern shows up on this subsequent ultrasound, albeit with less prominence, but it’s something we will need to keep an eye on.  Our latest doctor believes the bleeding was due to something that happened prior to delivery, possibly related to this area.  The E. coli infection is his estimation was coincidental to the bleeding and not the cause.


They also performed another lumbar puncture yesterday to both try to grow a fresh culture but also to try and drain some of the accumulating spinal fluid.  They were able to draw enough fluid for the culture, but not enough to relieve any of the pressure.  They have observed a higher white blood cell count in Madison lately, and they are highly suspicious of another infection.  She has been put back on CPAP to help her breathe which will take some of the stress off of her body.


As far as long term prognosis for Madison, it is too early to tell what exactly will transpire.  Much will depend on what damage has been done related to either the bleeding, the meningitis or perhaps this mystery area from the ultrasound.  In any case, it is highly unlikely that Madison will see normal development.  Again with disclaimers that it is way too early to tell, our doctor gave us the following range so we can manage our expectations.  10% to 30% (a wide range) will have normal development.  10% will have severe developmental issues.  The remainder will have a range of issues somewhere in between.  Many of the kids in the middle range can be observed to have issues with things like speech, motor skills, hearing, etc., but they have learned with therapy to work through with these issues in their lives.

 I never gave an update on Julie’s ultrasound on her gall bladder, but the results were negative.  The pain is probably muscular-skeletal  in nature and should resolve over time.  In an amazing bit of unfortunate coincidence, a gall bladder was still removed on Monday, just not Julie’s.  Earlier in the morning when Julie had her ultrasound, my assistant Gia went to the emergency room with severe abdominal pain.  She had to undergo an emergency cholecystectomy (a “gall bladder-ectomy” to most of us) later that day.  Gia is back out of the hospital and recovering normally at last update.

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