On Friday, after 24 hours of monitoring, we started making phone calls to various doctors about Adelaide’s eye, which had become red and puffy.
The first phone call was to the Casey Eye institute where she was seen last, but we didn’t get to talk to anyone there because “all of the doctors were out of the office at a conference”. So then we called the cell phone number we were given for our doctor who, inconveniently, is on vacation. We didn’t want to call him, at all, but we felt this was the reason he gave us his number…We left him a voicemail and called one last number, our pediatrician.
Our pediatrician’s admin transferred us to the on-call physician at Casey Eye. The on-call doctor was amazing and listened as Matt described the issues, then said he needed to take a look at her chart and give us a call back.
As promised, he called back and let us know that Adelaide was most likely, experiencing a reaction to the eye drops and that we needed to stop giving them to her immediately. We were alarmed, but a little relieved not to have to give her those drops any more.
Saturday was a dream. Adelaide was in fabulous spirits, sleeping normally, eating normally and generally being a happy baby. That evening we got an unexpected follow up call from the on call doctor to see how Adelaide was doing. This is something we’ve experienced over and over again from the doctors at OHSU, they follow through and seem to genuinely care. Another example: the Tuesday after Adelaide’s diagnosis, our pediatrician called me from her home, on her day off, to see what Adelaide’s diagnosis was because she had been thinking about her all weekend, and the computer system hadn’t been updated with her information. AMAZING!
Anyhow, so the on-call doctor called us to follow up and let us know that he got in touch with Adelaide’s doctor and they discussed her condition and determined that she needed to be on some kind of pressure reducing medication in order to keep her vision from getting any worse. So we were prescribed a new eye drop, one that that tends to cause less reactions. Plus, we only have to administer these eye drops once a day. He sent the prescription to our pharmacy at 7:30 PM and Matt went down to pick it up at 8:15PM. Unbelievably efficient.
Today was a tough day. She’s been feeling pretty awful since last night. All she wants to do is sleep, but she refuses to do it anywhere but in one of our arms and we can’t be sitting, we have to be standing and bouncing. We have to take turns because our arms and legs get so tired. Its 9:30PM and we finally got her to sleep in her swing. Matt and I are both breathing a small sigh of relief. I’m sure it won’t last long, but I’m grateful for the break.
We’re hoping this lapse in mood is due to the 24 hours we took her off the pressure reducing medication, and that now, two doses into her new medication, she will start feeling better.
We have an appointment on Tuesday with a pediatric glaucoma specialist at OHSU to discuss Adelaide’s diagnosis and treatment. We’ll let you all know how it goes!
Thank you again for your prayers and well wishes!