So these docs are figuring out his feeds, nutrition needs and what speech can do. They are working on getting him off TPN/Lipids fluid combination, but with that said, according to the doc, this won’t stop Lennon from coming home. I think he really just wants to make sure that he can hold his feeds without vomiting.
Lennon is still positive with C.diff, but they are communicating with the infectious disease to see what they can do to get rid of it. This may mean more antibiotics and maybe some other med to add good bacteria into his stomach/intestines.
Yesterday he had a day of vomiting, which I think happened for two reasons a) his clonidine patch fell off and b) one of the big meds (big as in volume) was given too fast. So today, the clonidine patch is still on, and they gave him the med at a much slower pace. No vomiting as of yet.
Lennon just called me on the phone to let me know: “Mom I walked”.
What an amazing kid he is. He has such motivation and courage to not only live but also to overcome anything and everything. I am in awe of his spirit.
I noticed that Lennon is much more upbeat these days, and I think that some of his depression that he had fallen into may have disappeared. But also I think that the bile duct leak had a lot to do with him feeling like crap, and now he doesn’t feel so bad anymore. He is laughing, playing, dancing in the bed, using his muscles by stretching and pretending to run from a bear.
More than likely in a few weeks after going home for a bit, we will be looking at going back, perhaps just as outpatients to have the stent removed and the g-tube placed (of course this depends on what he does with food at home).