I just woke Noah up, gave him some Bolthouse protein drink

I just woke Noah up and gave him some Bolthouse protein drink…

Reminds me when he was a baby, feeding him in the middle of the night…

I reminded him that TPN was truly absolutely the trigger of last resort, it’s almost guaranteed to cause other problems (like infections),

So basically it’s now until Noah gets in to see the TPN doctor as the ‘last chance’ to really turn this around with TPN

Of course that’s what I said two weeks ago and he’s still lost weight…

I’m gonna to call the doctor you gave me first thing in the morning, then the home health agency to see what kind of discount I can negotiate if insurance doesn’t cover it,

(since I’m literally a 15+ year user of home health services, I’m a ‘good client’, so hopefully they’ll be flexible)

I’m also going to set up the port appointment, since I want Dr. Ng to do it and Dr. Ng’s usually a little bit of a wait. Of course Noah won’t actually get the line unless Noah gets set up for TPN, but I want to get the appointment on the books since it probably won’t be until week of July 11th at the earliest..

And until then…

before Noah’s appointment with the TPN doctor I’ll keep making this last desperate move to keep feeding Noah at night…

Here and there little sips and bites…

One bit at a time…

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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