The Blessed Life

The Blessed Life

Wednesday, October 5, 2016

Update: The LONG version

Monday was a big day.  Like BIG.  And I should apologize in public to my husband because when he asked me how long I expected our appointment to last in St Louis, I told him a couple of hours. Y'all, we were there for six and a half hours.  I'm not sure who got tired/irritable/frustrated first, us or Lawson.  But, I can say that the trip was 100% worth it.  And I am forever grateful to the people who pushed us to go out of state and the people who helped pay for us to go out of state, and also the people who prayed while we were there and lastly my mother in law who watched the other kids while we were gone.

So, lets recap.  Lawson has been through the following:

Routine eye exam that revealed his optic nerves were bulging into his eyes
Eye Ultrasound
More vision screenings, more eye pictures, another eye ultrasound
MRV (like an MRI, but looks at blood vessels)
Lumbar Puncture #1
Diagnosis of Idiopathic Intracranial Hypertension
more diamox
less diamox
more diamox
Lumbar Puncture
more diamox
Lumbar Puncture
Neurologist visit
Hospitalization after diamox made him sick
less diamox
Neurosurgeon in OKC
New diagnosis of cranialsynostosis and referral to plastic surgeon to discus surgical options
St Louis to see neurosurgeon for second opinion and then an order to go see the ophthalmologist in the hospital
More vision testing
Eye Ultrasound
Neurosurgeon consult

So, what happened in St Louis?  What is the new diagnosis?  Nothing.  Lawson has nothing.  His eyeballs/optic nerves formed funny when he was just a baby in my tummy (lol).  But seriously, they did.  Had we seen this ophthalmologist  first we never would have had anything extra.  No meds, no lp's, no MRI's, no putting him under four times.  Nothing.  We would have been sent home with a clear bill of health.

But wait, Tracy?!! What about his head? Didn't a plastic surgeon and a neurosurgeon say his head was formed wrong? Yes, yes, they did.  But they were wrong.  His head is fine.  Like perfect actually. Those are the words the EXPERT in this surgery said to us.  "His head is perfect."

And what about those super high pressure readings from the lumbar punctures? False.  There is apparently evidence that points to anesthesia causing high intracranial pressure.  And since Lawson was sedated during his lp's, his pressure readings were not accurate.

So, first...this is all awesome news.  SUPER AWESOME news.  No more diamox! No more lasix! No surgery for a shunt or to reshape his skull!!  Next, Jason and I will decide between Lawson having a procedure done that involves putting a pressure monitor in his head for a few days while he stays in the hospital for them to continuously monitor his pressure or just going frequently to our eye doc to watch his optic nerve to make sure it stays the same.  Our doc in St. Louis believes we will see his pressure is totally normal and that the internal monitoring test will confirm 100% that Lawson is a-okay.  Jason and I are more cold, hard, fact kind of people so we wanted the internal monitoring done so we could put all of this behind us, but our neurosurgeon in OKC refuses to do it.  She got her feelings hurt when she was told she was wrong.  Oh well.  So, for now we wait.  Lawson is off his meds and we go back to our eye doctor in three weeks for her to look at his nerves.  We will start making other decisions after that appointment.

All that being said....

PRAISE JESUS! This is such an answer to prayer!  We are just so thankful.  We are also feeling all the feelings of being upset/angry/frustrated that we have been dealing with wrong information.  We are also angry/upset that we have put our kid through all of this unnecessary crap.  We basically are feeling all of the feelings and processing all of the information and still having to deal with a ton of doctors that now all disagree with each other and have their egos bruised from being told they were wrong.

We promise to keep you updated and let you know what happens at the eye doc appointment!  Thank you so much for all of your support and prayers.