Seattle Children’s – Day 96

The last couple of weeks has been very interesting. We got transferred a couple days ago out of the Covid isolation unit back to our friends in the RC.5 Surgical Unit. We have now officially been on the G.I. service for 4 days now. Over the weekend, we tried some new meds as a last resort attempt to be able to use the J-Tube.

Richard’s body had some adverse reaction to the meds and spent 2 nights waking up every 2 or so hours and requiring O2 and Respiratory Therapy. We stopped the meds yesterday and things went much better last night. This week we are ‘maximizing’ his IV nutrition and we are getting all the training to manage his Central Line. With any luck we will be going ‘home’ in the next week or so. We will be heading to stay at Grandpa and Grandma’s house with the camper for a couple months to figure things out. This does mean that our nomadic lifestyle will be on hold for a while. We are looking forward to being discharged and being able to be with family again.


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