Sunday – Back from the LGH

So I’m just back from visiting Alyssa at the hospital here.

Alyssa sleeping

1.) Orthopedic fellow agrees it is NOT Erb’s palsy. I almost wish it was that simple. He checked her out better than anyone else has yet, and identified that most muscle groups were active, therefore clinically ruling out the possibility of it being Erb’s. We also showed the doctors today photos of Alyssa in the Royal Children’s holding her arm in a position that currently she does not – due to discomfort and/or nerve issues. Erb’s should have been immediately apparent from shortly after birth.

2.) She has regained a little movement in the arm, although her shoulder range of movement is still impeded and she cries if you move beyond that range.

3.) She has swelling that feels like fluid to a couple of the doctors. May be a cyst, may be pus. There’s talk of aspirating the area of swelling to see if they get any fluid from it.

4.) Her blood tests again are showing an infection, although she is currently feeding ok, doesn’t have a fever, etc. It’s quite possible we’ve gotten lucky and caught this one early.

5.) They need to ultrasound and possibly do an MRI of her arm/shoulder. Ultrasound should be happening shortly according to an SMS I got from Donna when I got home.

At this stage, they seem to be leaning towards some kind of infection in the joint, or less likely, the bone itself. Treatment will probably be an extended course of antibiotics, which may mean 1-3 weeks in hospital with a long line in to deliver the drugs.

This all seems to me the same issue, a non-specific infection that responds to treatment with antibiotics. If so, the trick is going to be giving her enough antibiotics to eradicate it for good. 2 days wasn’t enough, 5 days wasn’t enough, so let’s see what happens with a longer course.

The infections they suspect at the moment wouldn’t have presented on any of the cultures previously done, so what are the chances we have had three mystery infections, vs one mystery infection that was getting knocked down by the antis but keeps getting back up? I’m not a believer in coincidence these days, Occam’s razor says we’re chasing a persistent little bug around her system, but it’s not really shown itself yet.

On the other hand, given all that has happened, it’s not as if she hasn’t had plenty of chances to pick something up. For those keeping score at home:

Nights in hospital since birth: 20.
Nights at home: 5.
Admissions: 2.
Wards: 3 (LGH 4N, RCH NNU, LGH 4K)
Most number of doctors discussing the case at one time: 8.
Lumbar punctures: 2.
IV cannulations: 5.
Blood tests: too many to recall.
Fingerprick tests: You’re kidding right?! probably over 100 by now.
X-rays: 3.
Ultrasounds: 3.
MRIs: 1 tomorrow, another one booked for December.

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