16/03/12

We arrived at ICU and were told that Jules had the tracheostomy earlier in the morning.  The procedure took about 2 hours in theatre, see details about tracheostomy (trachea = windpipe and stoma = hole) here http://www.nlm.nih.gov/medlineplus/ency/article/002955.htm We are not sure how long she will require the ventilator.  The nurse advised that the procedure went well with no problems and that Jules breathing was good.  By late afternoon the nurse advised that Jules was breathing 50% by herself with 50% assistance from the ventilator.  The secretions from her lungs require suction to remove them as before.
 

After the tracheostomy Jules was taken of the Profenol and Medazolam sedative drugs, she is still on morphine for pain relief, and was pretty much awake and aware when we were allowed in at about 11AM.  One or two of us remained with her most of the day.  She was angry and crying a lot during of the day, going between between wanting us there and wanting us out, being angry and sad. She was also delusional at times throughout the day and sometimes thought we were all out to get her, especially the nurse at different times.  It was very confronting for all of us.  It is hard to hold it all together all the time.  We have all had our times when we can't handle it but mutual support gives us the strength to go on, we can't imagine what it is like for Jules.  fortunately there is a pub close by,  Darrel and I took time out for a couple of beers late this afternoon to release some of our emotions, it was good for us both, he is Julies rock.

 During the day she was attended by different physiotherapists, one to massage and manipulate her hands and fingers and another to manipulate her chest to help her expel the lung secretions.  The ICU nurse said she will be visited by a speech pathologist to plan treatment to help her speak and to assess her swallow reflexes so they can decide when she can take nourishment by mouth.

 Because the air enters and leaves her lungs from the stoma which is located below the larynx ther is no air passing the larynx and she is unable to speak audibly.  Her lips move and we are trying to read them but we are not very good at it and it is frustrating for her to want us to understand what she is saying and we are not getting it.  By late afternoon she was whispering such that it was possible to pick up some words if one listened close to her mouth.  Hopefully we will get better lip reading skills and Jules will get better at whispering so communication will be easier.  When she wanted visitors out the message was easy to lip read the two words F*** **F.  We also have a white board and felt pens that we can write messages on and show to her.

 We are getting set up in the apartment and now have a printer and good wireless modem access to the office and internet.  I cooked the first meal here for Kylie and myself last night.  It helps to feel a sense of order.

 We have embarked on the first step of a long journey and are really looking forward to her transfer from ICU to the spinal unit  when she is able.

 We will update you all further tomorrow.

Kind regards Val, Norm, Kylie and Darrel