Day 03 - 10:30 AM

NIF - (-30)

Comments

Post a Comment

If commenting, would you mind letting us know who you are? Thanks so much!

Popular posts from this blog

Day 01 - 11:15a

Just heard from IR. Procedure went well. Vanessa is awake and alert. They WERE able to put in a triple lumen catheter. This means they should be able to use this as an IV, too, so she won't have to fight to have new IVs inserted. The current IV is a small 23g line in her right antecubital (bend of the arm) that is really finicky. Her IV pump was beeping frequently throughout last night anytime she bent her right arm ever so slightly. So, we're thankful for the triple lumen. Will update once she's back in the room. 
Read more

Day 01 - 11:35a

Vanessa is back from IR. Today's internist, Dr. Kevin Cleary, stopped by to see her. He agreed to adjust her Mestinon to every 3-4 hrs as needed and added Ambien as needed to help her sleep. He's going to speak w/ Neuroligist and Nephrologist to sync on next steps. Unfortunately he wants her on clear liquids for now. I think that'll be until she's evaluated by speech pathology. Speech is usually the team that clears her for solid foods in past visits. 
Read more

July 2026 - How we got here

Image
Vanessa receives Vyvgart injections once a week for four weeks and then none for four weeks for her Myasthenia Gravis (see here to learn what MG is). She's been on the injections for almost a year. Prior to that she was receiving Vyvgart IV. Vyvgart has worked well for her, but in the last few cycles of Vyvgart injection we've noticed the effects are not lasting as long as they did while on IV Vyvgart. Each day has gotten the smallest bit harder for Vanessa. Contributing factors could be some illnesses in the first half of the year followed by personal stresses that have made it difficult for her body to "catch up" and feel "normal". Not sure if IV vs injection is the change that's impacting how well it's worked, or if it's just the stressors of life that have hit this year (the stressors hit closer to the same time we noticed effects not lasting as long). We've been monitoring her strength levels daily for the last week and her breathing. S...
Read more