Marathon Day
Currently due to his condition and being in ICU, Connor is not accepting any visitors at this time.
Ending to another marathon day - We are both beyond exhausted (Dave fell asleep while drinking a cappuccino):Today Connor decided it was time to breathe on his own and even graduated to the next step, which is having the trach cuff (this occurred due to the propofol being turned off. They cannot have him on a sedative without the ventilator attached). The trach cuff means the ventilator is removed from the trach and he breathes on his own with only the addition of humidity over the trach valve. It was amazing to see him getting worked up and then calming down while at the same time regulating his breathing - huge step! They worked on tweaking his remaining meds all day long but were not able to find a happy spot that helped to relieve his movement and agitation.
The discussion tonight with the night nurse is that he needs to rest after his afternoon workout (he actually ripped 4 staples on his head incision due to his pushing/pulling). They have reattached the ventilator and started the propofol at a low dosage to assist him with rest. We are hopeful it will only require a low dose all night to keep his movements at a minimum and maintain a sleep zone. Understand that all nurses and doctors are ecstatic with the quantity & quality of his movements while Shan and I are distraught watching him struggle. This is normal & typical for them - fortunately or unfortunately for us, it is neither. Headed home now for another lovely night of tossing and turning in preparation for what lays ahead tomorrow - goodnight all.
Ending to another marathon day - We are both beyond exhausted (Dave fell asleep while drinking a cappuccino):Today Connor decided it was time to breathe on his own and even graduated to the next step, which is having the trach cuff (this occurred due to the propofol being turned off. They cannot have him on a sedative without the ventilator attached). The trach cuff means the ventilator is removed from the trach and he breathes on his own with only the addition of humidity over the trach valve. It was amazing to see him getting worked up and then calming down while at the same time regulating his breathing - huge step! They worked on tweaking his remaining meds all day long but were not able to find a happy spot that helped to relieve his movement and agitation.
The discussion tonight with the night nurse is that he needs to rest after his afternoon workout (he actually ripped 4 staples on his head incision due to his pushing/pulling). They have reattached the ventilator and started the propofol at a low dosage to assist him with rest. We are hopeful it will only require a low dose all night to keep his movements at a minimum and maintain a sleep zone. Understand that all nurses and doctors are ecstatic with the quantity & quality of his movements while Shan and I are distraught watching him struggle. This is normal & typical for them - fortunately or unfortunately for us, it is neither. Headed home now for another lovely night of tossing and turning in preparation for what lays ahead tomorrow - goodnight all.
I was just thinking about that earlier today, how difficult it must be to watch your child go through the violent movements, even if they are signs of progress. Thinking of you all.
ReplyDeleteHugs to all, <3 gillian, craig, effie & fergus in Victoria
ReplyDeleteGreat to hear of the progress he's making. Know you are in our thoughts continually and that we're breathing with you. Love to all of you. <3
ReplyDelete