Spent over an hour with the director of respiratory therapy at Woodbine today. Wonderful man - he is in charge of the ventilator/trach unit there and oversees all of the respiratory patients on the other floors.
Dan and I have been concerned for awhile over the fact that Estelle has had ever increasing amount of phlegm and secretions in her mouth which she cannot get rid of on her own. We worry constantly that she will cough and choke someday or that, because her swallow reflex is so poor, she will aspirate and get another pneumonia. Bob (the respiratory director) has also been concerned about the same thing, hence the long conference.
He discussed various means of preventing either such occurance - some of the simple enough to do and some of them a bit more difficult and painful. The best thing to do would be to suction her regularily - but suction is painful sometimes and uncomfortable all of the time. Mom would not be a good candidate for routine suction because she bites down on anything which comes near her mouth and does not want to let go. However, because I have been present a few times when she had eiher choked or I've needed to manually remove large amounts of think phlegm from her mouth, he is going to have a suction machine put into the room so that, in case of emergency, it is readily available.
For now, they are going to clean her mouth more often then normal (usually 2 - 3 times daily.) Now they will do it at least 4 times daily and any other time they notice she is retaining oral secretions. It is pretty hard to do, however, because, as I said earlier, she either refuses to open her mouth at all or she bites down on whatever is being used to swab her. There is always a danger of broken teeth when someone does this. No matter how gently the person doing the cleaning or suctioning is being, teeth sometimes get broken. I've had it happen myself - it's just one of the side effects which is sometimes unavoidable.
He is also going to put her on a different "turning" schedule. Currently the standard order on her floor is for bedridden patients to be turned every 4 hours....on the vent unit they do it once every 2 hours because of the increased susceptiblity to pneumonia. Eselle is not on a ventilator, obviously, but because she does not move or shift position on her own or lift her head or clear her throat by herself she is also at major risk of pneumonia and he (and we) feel that she is definitly a good candidate for being put on the more frequent schedule in the attempt to head off any unfortunate side-effect of being virtually totally immobile.
Bob is also going to try to get an order from the doctor to have speech therapy evaluate her every couple weeks on a regular schedule because it will give him a better idea of just how capable she is of swallowing - thus he can better evaluate and update her risk of aspiration and we can better evaluate if she is improving enough to actually undergo the barium swallow test again in the hopes that she may someday be able to drink a cup of tea or eat something solid again.
All in all, it was a very fruitful discussion - and he was nice enough to give me his personal phone number and tell me that if we had any problems or questions with anything, even matters other than respiratory ones, that we could call him and he would try to get us the help or information that we needed.
I also discussed her feeding tube with her physician today - and he seems quite pleased with the condition of the current one. That, too, is good news. The skin seems to be continuing to heal and the leakage is managable with gauze 4x4s.
I continue to be impressed with the caring and profesionalism of certain members of the staff here. It is heartening to find people in this day and age who are willing to go that extra mile.
We may not be able to make Estelle better - but we are trying everything we can to make sure she does not worsen.
I know it does not sound like enough - it does not feel like enough - but for right now, it seems to be all we can humanly do.
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