May 26 - Evening

20:12 -- Another day, another wee upgrade in Max' health status (and believe me, we do celebrate the small victories). We took advantage of having Phoo's parents here to care for Meaghan and went to the hospital to see Max this morning. We met with Dr. M., who said she hadn't cared for Max since his first week in the NICU. Dr. M. reduced his breathing assistance rate and said that she could possibly see him coming off the ventilator as early as tomorrow. We were so excited! And then, when I returned to the hospital alone while Meaghan was napping, she backtracked after reviewing last week's "hiccup" when Dr. R. tried to wean him off the ventilator too quickly. So, surprise-surprise, we just have to "wait and see how he does over the next 48 hours." Dr. M. was so apologetic about getting our hopes up and I told her that Max' best interest comes first so don't sweat it, etc. etc. She seemed surprised that I didn't get upset. Please, my son has a 1cm ductus in his heart and I'm going to pout about keeping him on the vent a couple more days? Another good piece of news: Max' platelets are UP from yesterday -- 35K yesterday.... to 42K today. He hasn't needed any blood products since Wednesday. Quick! Someone knock on wood.

I remember, it was about two months ago when cnn.com ran daily articles about autism and its effects on not only the children, but the parents dealing with it. I became so curious about the alleged link between vaccination(s) and autism that I quizzed Meaghan's pediatrician as well as Meaghan's school director about their thoughts and recommendations. It seems so assuming on my part in retrospect. I, like millions of other pregnant women, just assumed that we'd breeze past childbirth and infancy and move toward toddlerhood, vaccinations and the like. Now my family is in the eye of the hurricane, having survived the first wave of destruction and here we sit, buying time until the next wave hits. We're so focused on keeping him out of heart failure and stable that we don't -- we can't -- obsess about what the doctors will actually DO about the ductus, if Max can bottle feed (the doctor won't even talk about when they'll determine whether he can suck and swallow), the extent of brain injury he suffered, the inevitable MRI and CAT scans, hearing tests, potential long-term liver damage.... It's just too much really. Really.

All right so I'm keeping the last paragraph in. I considered deleting it, nervous of having even put it into words. Should I have? I mean, it is what it is, right? That's where we are. It's reality, and sooner or later we just have to f-in' suck it up and face it. No, it doesn't have to be tonight, but it's what is on my mind RIGHT NOW. Every post in the last week has been "ventilator this," "tweaking that." It creates an extremely false sense of security w/r/t our situation, and I know I've consciously been ignoring that nagging "then what?" question lurking in the back of my mind. So we get off the vent and onto CPAP -- then what? He's eating, he's pooping, he's breathing.... THEN WHAT?