Update from Nancy

From Nancy...

Hi, blog followers!

Those of you who have logged much time at a hospital know how “elastic” time can be. Sometimes 20 minutes can be long and then the next time you look at the clock, hours have gone by! Days run together and so do the weeks. 

The biggest news of this week is that on Thursday, Steve was given a state-of-the art ventilation-measuring apparatus called NAVA. (You may remember that is one reason we chose Drake in the first place). This tube which goes down into the diaphragm measures the activity there as relates to each breath. He was bouncing all over the place in terms of full ventilator support, then all the way to being off the vent entirely for up to two hours. With seven rotating pulmonologists, this all gave a mixed picture as to where he really was. The NAVA, which is very new technology, measures the patient’s capacity and then sends information for changing vent settings.

Steve’s reading on Thursday was that his upper chest muscles have been doing all the work and  so far the diaphragm hasn’t been engaged. He has activity of the nerves radiating from C3 and 4 in the spinal column but not from C5, which “feeds” the diaphragm. This explains a lot in terms of the great effort he has expended so far and how hard it has been. The muscles he has been using aren’t made to do the work….they are for “backup” to the diaphragm. So he will be given rest from weaning during each night and resume during the day. Taking him completely off the vent, even for little amounts of time, will be determined by the activity measured weekly in his diaphragm. When those nerves activate those muscles, then he will make real progress getting rid of that ventilator once and for all!  So thankful for this technology that gives a tailored plan for Steve!

On the talking front, he has to have a setting on his “tubing” that forces air over the vocal cords and diverts air from his lungs, so it doesn’t feel great to him. Nonetheless, he has been willing to use it more this week and verbalizes a lot when it is switches on. Much of the time I can’t understand the words, but with the combination of the alphabet chart for spelling and also hearing the words, I can often get it. Sometimes, it is very clear! Like this week he said, “Now, can I have some ice?”  (after we had taken too long doing other things for him) He also said several times in frustration, “Oh, nevermind!”

Steve was helped to sit on the edge of the bed for 20 minutes with his feet on the floor. He mostly holds his own body erect and his head, with a couple of therapists supporting at key areas. On Thursday he was transferred to the recliner via Hoyer Lift and stayed for three hours! Thank you, Sue Giegler, for staying a “double shift” with Steve while he accomplished this and received his NAVA!  (I was out of town for the day.)

Steve still awaits the swallowing test but in the meantime, appreciates all the ice chips I can bring and sometimes a little Italian ice.

Thanks for following along. Your prayers are so appreciated! We feel them!

Nancy