It is only 10:30 am in the morning, and things are really busy around here! At rounds this morning, there was a new attending that we had never seen before, an older man. I really liked him because he really shook things up with Hannah’s care and got the fellow and residents to think more […]
[Continue reading...]PICU, Day #28 – Brain MRI, movements, sedation
14 Jun by
28 friggin’ days in the PICU, seriously. I am so ready to get the heck out of there!! I can’t believe tomorrow will the beginning of week 5 already. Daddy took the red-eye here and got here at 6 am yesterday morning. Having him here has been everything I needed. Support, friendship, a laugh, […]
[Continue reading...]PICU, Day #26 (part 2) – I finally hit it…
12 Jun by
I guess after 26 days of watching my helpless beautiful daughter just continue to get thrown worsening curve balls left and right, I finally hit my breaking point today. I just can’t do this by myself anymore. Daddy is flying in on the red-eye tonight to be here with me for a week. […]
[Continue reading...]PICU, Day #26, “choreoathetoid” and brain MRI
11 Jun by
Seriously, just when we finally get some good news and start to turn a corner, we get slapped with another negative possibility! It is incredibly frustrating!! Late, late last night (after I blogged), Dr. Schiffmann and I emailed back and forth regarding his conversation with Hannah’s neuro doc here. Chorea type of movements have never […]
[Continue reading...]PICU, Day #25, Can’t catch a break
11 Jun by
Yesterday was a nightmare. Today was even more of a nightmare. Yesterday’s facebook update (because I don’t feel like rehashing right now): Having a fantastically crappy day — Hannah is a mess now that she is trying to be weaned off her meds to the point where after 5+ hours of thrashing around and finally […]
[Continue reading...]PICU, Day #23, Guilt
9 Jun by
Dr. Albright did Hannah’s trach change very early this morning, even before I came down! According to the night nurse (who was still on), everything went great, the stoma (hole) site looks clean, and she now has a regular trach collar on. So during rounds today, it was decided that they were going to work […]
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