We just spent another weekend in the hospital.
Nothing new is going on, we are slowly increasing Jagger feeds.
We had to go slow since he did not eat anything while he was in the ICU.
So he is on TPN (IV Nutrition) and half strength formula. so far so good, and we giving him a little more each day. The ultimate goal is to feed him 18 hours a day (Poor kid)
Dr. B came by and gave us an article on Leigh Disease, nothing really new that we did not know in it. A lot of incertitude about the course of the disease but the prognosis is certain and there is nothing we can do about it.
Since we have a more define diagnosis, all doctors attitude have change so much toward us, they pretty much agree with anything, any course of action we want to take.
The challenge the last few days is that the GI, and Neuro docs on call are not our doctors, and with the complexity of his condition it is very difficult to get a new doc up to date on all that happen.
However, we are lucky enough that Dr. K stop by to see how Jagger is doing even if he is not on call. he has been great with Jagger and helping us trying to figure this disease out and finding drugs that can help him with his movement disorder.
We were told that unless we have a setback, we should be going home this week!! we can't wait, since he has the port in place now, we could handle everything at home if we get nursing help.
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