Saturday, May 25, 2013


It has been another week of procedures.

On Tuesday, James had his monthly tracheostomy change. This has previously caused a lot of pain and discomfort. The change has become routine, but it is not without its own anxieties. James has often required mechanical ventilation from the level of sedation. It is frightening to wake up on a ventilator with no memory of the process or procedure. Nevertheless, James did phenomenally well. I was allowed to remian in his room and hold his hand. It was difficult to watch him cough and gasp, and reach out for help to breathe (even with heavy sedation). He was slow to wake, but I was grateful to be bedside.

Yesterday, James had a bronchoscopy, followed by a re-suturing of his ECMO circuit to his shoulder. He has had very thick secretions that are difficult for him to clear through independent coughing and chest physiotherapy. The infection also appears to have caused a collapse in his upper right lung. The hope was that a bronchoscopy would help to open James' airways. The procedure was largely uneventful, and James required a minimal amount of sedation.

Unfortunately, James had a lot of anxieties about the bronchoscopy, and the possibilities for complications. These are valid fears based on past experiences, and I was limited in reassurances and distractions. Once again, I was grateful for permission to remain bedside. This really does make a world of difference for both of us. It is exceptional to be involved in his care at all possible levels. 

Finally, James' ECMO circuit required re-suturing (again). This has become a regular occurrence. It is difficult for sutures to remain intact while James is awake, and to some extent, James is also mobile and ambulatory (with the presence of a perfusionist). This was a fast and simple procedure, and with a hand to hold, James managed through the pain of freezing and needles. He is amazing at taking it all in strides.

We look forward to a weekend without event. Unless, James gets his call. That would be a more than welcome procedure.

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