Getting Worse Before Getting Better

I am so glad that I can report that Jon seems to be doing a little better this evening (Monday), after a bad night and morning. I'm afraid time is a haze. Did I let you know that the drain for his gallbladder worked beautifully? It immediately relieved his pain, and his white blood cell count is back to normal.

However, being in bed for days is doing a number on his respiratory system. He has had some crud in his lungs and he spent most of the day yesterday trying to cough and use suction to get it out. He was very uncomfortable and during most of this time he was using the BiPap (breathing) machine he uses at home. He didn't use the BiPap at all while he was up in his wheelchair for a few hours.

After I got back to the hospital last night (Sunday), Jon was still pretty uncomfortable and a bit distressed. Then at about 11:00 last night he had a significant event. His vitals crashed and he wasn't able to breathe. It was quite serious, but getting him on a hospital BiPap machine with a full face mask brought him around. 

He was quite uncomfortable all night and had a hard time getting used to that mask. This morning he tried using his own bipap machine again because it is much more comfortable. After not too long, he had another episode. This time all of the equipment was already in the room and he recovered quickly. 

The Drs really don't know why these episodes happened, but they are speculating that the crud in his lungs created a plug and prevented him from breathing. He has now been on the mask all day and is doing much better. His vital signs look better than they have looked in days, and he isn't coughing like he was before. I don't know if the crud is going away, or if he just isn't getting it up, but he really does seem a lot better this evening. They are still hearing decreased breathing activity on his right side.

The real concern is that if he can't get rid of the crud in his lungs on his own, eventually they will have to intubate him to help him breathe and suction his lungs. I've spoken to the attending pulmonologist as well as the pulmonologist from the ALS clinic and they agree that even if they intubate him, he may be able to come of the ventilator with a little time. Our fear, of course, is that due to the ALS, once he goes on a ventilator he won't be able to come off. I was relieved to hear that might not be the case.

We are still praying that his lungs will clear, and this afternoon and evening seem promising.

** Note from Tuesday morning... The Drs were just in and really do believe he is on the mend! Over the next few days they will wean Jon back to his home BiPap machine, and hopefully he will even wean back to just using the machine at night. Very good news!!