Friday March 21st

Yesterday began "full steam" and ended "out of steam." (I think Dad would appreciate the train references.) The morning started with clarifying certain aspects of his care - labs, treatments, and plans. The social worker visited and said that insurance approval for his move to the next facility wouldn't be available until Monday. This proved to be an unexpected blessing, since we now had the day to perform the EMG test and to give his trach longer to heal. It also allowed us to make a new discovery...

While sitting inside the doorway of his room, I happened to overhear a conversation in the nurse's station between a Lead Respiratory Therapist/Nurse Manager and a Resident. The resident remarked on "the patient in that room with Guillain-barre" and the RT replied, "He would be a perfect candidate for NAVA." I continued to eavesdrop some more until finally I just inserted myself into the conversation and asked if they could stop by after rounds so I could ask some questions. They very graciously agreed.

For some background, NAVA is short for Neurally Adjusted Ventilator Assist. It is a cutting edge biofeedback system for helping wean patients off ventilators. Mom and I first became aware of this when touring LTACH facilities the other day. One facility had it, the other didn't. It is so new that not many studies have been performed on it and there is not much literature available about it.

So when the RT came into the room, we asked more questions about NAVA and it turns out that we were talking to one of the few authors who has been published regarding NAVA use. It really is "the latest and the greatest" (The question now is does he need "latest and greatest" or "tried and true").  The resident was able to print a copy of the paper for us.

At this point, we decided that it would be worth our while to check out a third facility that might be able to offer a mix of comfort and technology - they have NAVA.

At this point Patrick (my sister Kristy's husband and Steve's fellow gear head) entered the scene. He was a much-needed comfort at this time. We were wearing thin and Patrick jumped right in to help us decipher some of Dad's needs. We then asked him if he wouldn't mind touring the new facility with Mom while I stayed to meet with Drs. Poor Patrick, he came to visit and the 2 Mrs Parsleys put him right to work. Next time, I bet he brings a change of clothes and a sack lunch, just in case.

Patrick and Mom toured the 3rd facility and came back saying many great things about it. It is possible that we might change direction and go with this new option. NAVA being the key factor. Transfer is tentatively scheduled for Monday although since we are starting over with insurance approval, I'm not sure if that will cause a delay.

Following Dad's 5th and final plasmapheresis treatment they removed the central line in his neck. Slowly but surely he is ditching some of his extra lines.

The EMG seemed to confirm what has been hinted at all along. This is going to be a "long process." They spoke of recovery in terms of 9-12 months but anticipate him to be functioning at the end of that time (possibly with braces or cane, but we will take it!).

So, we still have the same hope - but it seems it has become a hope that will need to stretch out over time. We can do that.

(Also, thank you Cheryl Becker for brightening Mom's week with a pot of pansies by her front door. You know her love language - flowers!)