Grace’s epileptologist, Dr. Doescher is moving on to new opportunities where he will no longer be providing patient care. While we are happy for him he will be greatly missed. He has played a crucial role in not only Grace’s life but also ours. We have both written a blog post to help ourselves process … Continue reading We can’t tell Grace’s story without you
Today was a big day for Grace. She is no longer connected to a pulse ox, ECG, and drum roll please…the NG-tube was removed! So many fewer tubes and wires to contend with all at different angles are a welcome change. She has also started a slow feed of Pedialyte (just 15ml/per hour) and we … Continue reading Tambourine Girl
I was discouraged this morning as I drove through the rain to get to the hospital. It was gray and gloomy and that’s how I felt. This is overwhelming. I asked myself how we are really supposed to do all of this – work , be with Grace, represent Grace, be with Graham, help each … Continue reading Rain Rain Go Away
Has Grace had any surgeries? We are asked anytime we are updating records or seeing a new provider. She’s had a GI Tube in 2006 and a Nissen Fundoplication in 2007. She’s had a Corpus Callosotomy in 2010 where the corpus callosum was removed between the halves of her brain…this is usually where jaws drop … Continue reading Has Grace had any surgeries?
Grace has in the ICU tonight. I was with her today during her monthly infusion that she practically slept through. Her abdomen has been a bit distended but that was attributed to some gas that we have been able to mitigate through venting of her G-tube and with gas drops but today it just seemed … Continue reading Back in the Saddle Again – ICU