A heavy dose of reality….
Next week we will be formally transitioning our Primary Service from General Surgery to the Gastroenterology and Hepatology Service.
We have now spent over 350 nights admitted at Seattle Children’s under the General Surgery Service, that is right, just a few days short of 1/3 of Richard’s life has been here under the close watchful eye of Dr. Goldin and the rest of the team.
What this means, is we are effectively giving up on using his J-tube for feeding in the foreseeable future. At some point Richard will learn to eat food orally, but that will be at least months (many) and possibly years down the road.
In the meantime we will be going home with IV feeds (TPN and Lipids) through a central line. This comes with some very heavy geographical and lifestyle restrictions. We are still likely be restricted from leaving Western Washington for more than a week at a time. There is still a lot that we do not know and are getting mixed messages, so there is still a shimmer of hope that we can remain Nomadic…
What we do know is over the next week or two mom and dad get officially trained on how to manage a central line at home. Then whenever we are done with our Covid Isolation and/or our training, whichever is last, we will be discharged.
We will be returning to our “home-base” in Bremerton, WA for a couple months to regroup and modify our plans for the near future.
Dad is depressed about this on several levels. Also, the separation from one and another for Covid Isolation is also being very emotionally challenging.
