Teaching 9 hours yesterday & schlepping drums in & out was like a walk in the park compared with what Andey & her mom pulled with Larsy all day. Reports are of an occasionally sleeping, mostly hollerin' boy. Struggling to get any food or water into him, they gave him some morphine and valium at various times, with mixed results. Andey spent some time on the phone with the very good CCS (Complex Care Service) doc, who asked all the right questions, was empathetic, and called back later in the day to check in. A new model of doctor, indeed.
One of the hopes I'm hanging on the the CCS docs is their ability to wade in this grey, murky water with us. They seem to know this is probably not about just one thing, and I'm hoping they don't grow increasingly hostile or distant when they can't fix it, like we saw with the standard hospital pediatricians. I'm guessing that the latter might feel frustrated & inept when they are unable to diagnose and treat the problem, and that most of them have that I'moneofthesmartestfolksaroundafterallIwenttoHarvardmedical thang happenin'--and all blessings upon their intellect and ability to cure most kids-- But they don't have smarts enough to know how to stay present and connected with the family, to talk compassionately with parents whose child has been in the hospital for nearly a month in pain, with no answers.
The CCS docs are not only willing to talk with us at length on the phone, helping us through a crisis weekend when we're trying to stay home, but will cover Lars now, both outpatient and inpatient. When he's inpatient they'll be his primary attending docs. He has his first outpatient visit tomorrow.
A couple of you have asked about test results that I haven't written about. Docs ruled out the question of depakote irritation when they did the endoscopy, assuming that they would be able to see a small ulcer or something else physical during that test. I have not heard back the biopsy results, which included the celiac disease test, but we have had him off all gluten for about a week now (including, sadly, his beloved cheerios). The nutritionist suggested two full weeks off, then two full weeks on for a complete test, so we're still in the middle of it. He continues to eat dairy-free and soy-free, as well.
Larsman's sleep Saturday night with Grandma was pretty good; last night with me was not terrible, but very very restless & awake much of the time.
He's been screaming so intensely for the last hour that there's no possible way to get a bite of food or a sip of liquid in. We're dancing on the when-do-we-take-him-to-the-ER-for-IV-fluids line. Weighing diapers, etc.
Andey's mom flies back to Sacramento this morning. We will miss her sorely. We're looking for friends to stop by for a few hours in the evenings this week, folks to take Joa home to their house for dinner a couple evenings, etc.
In memory of cheerios and happier days, here are some photos from this past Halloween:
Hugs to you all who care enough to read. It really, really helps.
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