Glaucoma is a slow moving disease, so not a whole lot of improvement or deterioration has occurred since Friday.
We’ve been following doctor’s orders and giving Adelaide one eye drop in her left eye each morning and evening since Saturday. Have you ever tried to give eye drops to an infant? It is ridiculously hard! Our patented technique is the sneak-attack: We lay her on the changing table and while she is looking up at us Matt primes the dropper, and at the right moment, BAM! drops the medicine in her unsuspecting eye.
It wouldn’t be so bad if all we had to do was get the medication in her eye. That’s not the case though. These eye drops are are adult strength medication which means each time we drop the medication in her little eye, we then have to apply gentle pressure on the inside corner of her eye to make sure that none of the medication gets into her nasal cavity where it would be rapidly absorbed into her blood stream causing toxicity.
We’re supposed to apply pressure for 30 seconds. It’s all we can do to make it through the full 30 seconds while Adelaide is screaming and squirming. We’re told, anecdotally, the drops are painful. So the drops are followed by nursing, which effectively calms her down and she usually goes right to sleep.
We’re still not done though. Now we have to monitor our three-month-old baby for signs of toxicity and medication side-effects. This consists of checking her every hour or so for fever, which is the only thing we can effectively measure. We do our best to gage her heart rate to make sure it’s not rapid, and take inventory of her overall color to make sure she isn’t too pale or too rosy. Outside of these things though, it’s tough to know how she’s feeling.
As she’s only three-and-a-half months her vocabulary is limited. What we have been able to translate so far looks like this:
“waaa” = I’m hungry
“waaa” = I’m tired
“waaa” = I’m bored
“waaa” = I pooped myself
“waaa” = my eye hurts
“waaa” = you’re bothering me
“waaa” = I’m experiencing side effects from my medicine
So… it’s tough to accurately translate what she’s saying.
Being on constant alert is exhausting, but we’re maintaining hope that these eye drops are doing some good towards preventing any further vision loss.
We have a consult with a local pediatric glaucoma specialist next Tuesday where we hope to get a second opinion about her course of treatment. Everything we’ve read about the condition and the treatment matches with what our current doctor said, so we’re simply getting a second opinion for good measure.
We’ll let you know of any updates to her condition or treatment!
Thank you all for your support, it means so much to us.