(guest post by Adam’s mom) Things look and feel better. The new attending doc in the ICU this morning had a different take on Adam’s reality of severe axonal damage GBS. He feels that there’s a big range of recovery and that Adam has characteristics which he thinks predict at least a good partial recovery over the next 12 months. He thinks after a couple months in inpatient rehab amongst other things, he should regain his swallow and ability to handle his secretions and so be able to be off the ventilator and therefore be able to talk, eat food, etc. There’s a good chance that he’ll regain the ability to perambulate, though perhaps with a walker or cane. What may be difficult will be the fine motor of fingers necessary to type, but voice recognition software may be able to compensate. Of course even better outcomes might happen, but as a basic realistic hope, I’ll take this in a heartbeat. There are two other severe GBS patients in the ICU who are much worse than Adam. This doc thought he had only medium level of deficits of the axonal type of GBS
Because of crowding in the ICU, Adam got moved back to the step down. Unfortunately it’s crowded and noisy but with less bad bugs lurking around. It sounds like right after the plasma treatment is finished (maybe sunday 12/28), he’ll be heading for rehab.
On a lighter note, Adam and friends are upgrading the laser communication system with a large foam core board with the letter board in the middle and frequently used words and punctuation surrounding it. It should speed up communication and perhaps make unnecessary writing down each letter as he lights it.
We hope to make two more to bequeath to the two ICUs when he leaves for rehab. He will not be forgotten here!