Finding our new “normal”

Today was another settling in back home kind of day. Alyssa had a good night, really good BSL this morning and has been feeding well during the day. She’s just had her last breastfeed for the night and we started her on the pump about 30 mins ago.

This morning, we saw our paediatrician for the first time since he shipped us off to the RCH and filled him in on what he hadn’t already heard from the metabolic team at the RCH. We will visit again next Wednesday to check Alyssa’s progress, once she has seen the child health nurse.

We discussed some practical aspects with regard to replacing the semi-permanent naso-gastric (NG) feeding tubes and eventually, after Alyssa has her gastrostomy in March, who will be able to assist us in replacing the PEG. It turns out that probably the most help will be Ward 4K (the children’s ward) at the Launceston General Hospital. Although we learned how to do an NG tube, we don’t want to have to do it unless it’s an absolute emergency. Likewise, we don’t want to have to stress about replacing a PEG if we aren’t entirely comfortable with doing it right.

We also discussed Alyssa’s right arm, which appears to have suffered some nerve damage as it is often weak and floppy. The doctors all seem to think it’s Erb’s Palsy, also known as Brachial Plexus Palsy. Whilst the presentation seems to fit, our concern is that it didn’t come to our attention until last week that her right arm was weak. At the time, the neonatologists and I discussed if it had simply atrophied due to the splint being on it, however when we mentioned it again on Tuesday, they were more interested in looking at it and had some X-rays done that came back clear of any apparent fracture.

After we came home from our appointment, I suggested we should check the photos we had of Alyssa post birth and also in the LGH. Sure enough, we found numerous photos of her at home, in the LGH NICU and even at the RCH in which she is using her right arm normally and it doesn’t appear at all limp or weak as it does now. All the reading and material I’ve found doesn’t indicate how quickly Erb’s becomes apparent if the damage occurs during labour, but one would imagine that it would appear fairly quickly, not two weeks later.

Regardless, we are continuing with the exercises the physio at the RCH gave us, and our doctor and paed both referred us to see St Giles as they apparently have a paediatric physiotherapist who should be comfortable working with a baby. Erb’s is a far more common occurrence than GSD, so it’s not like we need to necessarily defer to the RCH for treatment if the physios here are competent.

Alyssa and LiamThis afternoon, we were even brave enough that I stayed at home with Alyssa and Liam while Donna went to battle Centrelink over carer’s allowance, and more importantly, getting a healthcare card for Alyssa which will assist in the higher than normal cost we’ll incur due to GP and paed visits, test sticks for the glucose meter (which you have to get on script), etc.

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