Weekly Update from Nancy

From Nancy-

Hi,

Here’s this week’s news from the GBS “front”:

You have been reading about the progress Steve has been making with the ventilator. After 3 months of asking questions, I’m still trying to understand where he is in the progression of getting off the vent. Up to now, he has been getting less and less assist from the vent in terms of what they call “pressure support.”  It helps him take breaths and for many days now it has been at its lowest support setting. This week the respiratory therapist has been giving him his first trials of being truly off the vent! So far, Steve has met the goal of 2.5 to 3 hours a couple of times! Other times, he was too tired to go more than about 5 minutes. It is truly hard work to wake up the lungs to do what they used to do without your thinking about it!

We are so proud of the effort and determination Steve has. We can remember in the early couple of weeks when we finally saw a tiny red dot moving on the ventilator screen indicating his body was helping the ventilator for the first time since GBS struck. Thanking God for this progress in getting off the ventilator, which is the key to so much more of his therapy progress, such as more opportunities to talk (with the trach collar and a valve that shoots air past his vocal cords). Occupational and physical therapy can also do more for Steve without the encumbrance of the ventilator.

Steve and I are trying to master a new way of communicating in which he moves a laser pointer attached to glasses to point out letters on a chart. It is a real learning curve if you can imagine moving small head muscles after weeks of being paralyzed. Facial muscles are returning and I have been so happy to see a few small smiles.

Another specific prayer request, please….I have begun working toward getting an ophthalmologist to come see Steve for his left eye. It  involves things like temporary credentialing to come to this hospital unit, several people consenting on both ends of the process, and a doctor willing to make the unusual out-of-office trip to see Steve. We really need this. Thank you!

Love to all our readers. Your support means the world to us.

Nancy and Steve