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intercranial hypertension entry 18

Feb 16, 2011 - 0 comments
Tags:

Baby

,

intercranial hypertension

,

eyes

,

Headache

,

diamox



Quite a bit has happened since my last entry.
Most importantly, we have a beautiful new daughter! She was born about 6 weeks early! (Essentially due to her mums Intercranial hypertension)
Since my last entry, my wife hasn't been home - she's been in hospital struggling to deal with this damned IH condition and all the horror it brings (headahce, nausea, tinnitus, reduced vision)
Thankfully the staff blocked out a two bed room and stopped other patients from occupying it (amazing in a very busy hospital) so she got as much rest as possible in a darkened and quiet room.  They also had her hooked up to a PCA for a long time.  The idea being she had a baseline of oral pain relief, but if things got really bad really quick, the PCA could be used to quickly keep on top of the pain - but really loads of opiates aren't great for an onboard bubs :(
They also put her on a low dose of diamox to see if we could medicate the pressure down.  After trying to delay things as long as possible to let the drugs work, they finally decided to do a lumbar puncture on the terms my wife wanted - under a GA (she has a terrible phobia of LPs)
So they went in... and no luck - couldn't get to the dural space due to scarring and other issues and bubs wasn't liking the GA, so they pulled the pin on the procedure.
That evening they told us they wanted to deliver the baby the next day.  This would open up the medication options a little and hopefully with baby out, one of the factors making the IH worse would be gone.
So now we have this incredible little bundle that we both adore, but so far (about 12 days out from her delivery) mum still has a terrible headache, nausea, blurry eyesight with large blindspots.
The plan now is to attempt another LP, but guided this time so they defintely get in.  Was supposed to be happening today, but postponed for a week!  very frustrating.  My wfies condition continues to fluctuate wildly.  Some days, she's ok 6/10 pain which she can deal with and no nausea.  Her pupils return to almost normal.. but within 12 t0 18 hours, she can be up to 9/10 pain, fully dilated eyes, major nausea and bed ridden again.  It changes so fast - way faster than I think the docs realise.
While I've not had much good to say about the hospital in the past, and despite some dreadful interdepartment organisation, I have to say, so far, this has been a better hospital experience for us.  for once we're just fighting the condition and not really in conflict with the staff.
nb - people might also be wondering about the effects of diamox and the morphine on bubs.  The morphine possibly did make her quite twitchy for a few days after birth.  She also may have had some very mild withdrawl symptoms, but we've been assured it wasn't at all bad.  She did have issues with breathing, but thats mostly down to being early and she was on a CPAP for a few days.
The diamox dropped her electrolytes a little and her haemoglobin dropped sharply, but levelled off at an ok safe level.  Mums bloodgasses were the same as bubs, so we think its the diamox.
12 days on and bubs is doing fantastically - piling on the weight and free of most tubes/monitors etc.
Very scary time for a few weeks there - having to take these meds, but not really knowing what (if any) effect it would have on the baby, but ultimately we had to make sure my wife was ok or bubs wouldn't be either.


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