Tonight Donna came home early so I could go and visit Alyssa for a little while. Liam is still sick with gastro, and we didn’t feel like inflicting a visit on him, us, or anyone at the hospital, so we swapped roles. I gave Alyssa her last feed for the night from her bottle, then got her ready for her feed pump, which was nice considering I had been too sick on Sunday and Monday to see her myself.
Alyssa had a new cannula placed this evening, the one in her left arm had started leaking and bleeding out. I’ve lost count, but we think this is maybe the 9th or 10th IV she’s had inserted in the last 6 weeks. More than enough anyway. Speaking to the doctor tonight, she confirmed that her results are looking good and today’s ultrasound didn’t show any trace of the infection in the humerus or shoulder so Alyssa is still on track to come home this Saturday, and hopefully this cannula will go the distance!
Apparently tomorrow they will be presenting Alyssa’s case via video conference to the other paediatric teams in the state – both her initial presentation with GSD, and the subsequent infection – apparently it’s very rare for neonates to get osteomyelitis, let alone neonates who come in with a 1:100,000 genetic condition! She says that it’s highly likely that the infection came from one of her IVs, but she said that the location of the infection wouldn’t really correlate with the location of the cannula from which she got it – if that’s how it happened. I guess we’ll never know, although I do suspect that it was the fact that the RCH kept going with the cannula she initially came in with for a while even though it was already 4 days old by the time she got there.
Even though we will have Alyssa home soon, it won’t quite be back to normal around here. Next Wednesday (17th Dec), Donna and I fly to Melbourne for the day with Alyssa for appointments which we made before we came home – it seems like so long ago since we were there last, but it’s really only a month – I guess not really having had Alyssa home during that time has made it seem so much longer.
It’s going to be a long day, 6:15am flight out, and 9:00pm flight home – Mum is going to come up the night before to watch the boys – we’re so lucky that our parents are willing to travel so much to help us out, you really can’t underestimate how much support like that helps.
Depending on what happens it could be quite a tough day for us – for those who don’t know, the primary reason for the visit is for Alyssa to have an MRI of her brain to check for any signs of brain damage as a result of her hypoglycaemia. We’re hopeful this will come back 100% clear, they did do an ultrasound on her brain while we were still at the RCH which they were happy with, but because they can only see through the fontanels and not bone, it doesn’t give a comprehensive picture of her brain. An earlier U/S at the LGH did show some possible bleeding, but they said that it’s possible that was either an artifact, or has self resolved with no lasting damage.
We also have to have another hearing test done on Alyssa as she has been on the antibiotic gentamicin, which can cause damage to the ears that can result in problems with balance and/or hearing loss. Again, she had a test upon leaving the RCH which came back good, but since she has been on genta again at the LGH, the paeds want us to go to the test anyway as she has now had another longer course of it.
Finally, assuming we get through all those tests with good news, we need to meet again with the metabolic team to review her case and learn more about managing her GSD, and meet with the genetic counsellors to discuss the impact that the GSD diagnosis may have on the rest of the family, and any future children we may have.
We had always planned to stop after Alyssa, 3 kids is enough, but especially considering how Donna ended up in hospital multiple times and having to be induced because she was so sick. Now to find out that if we had another child they too would run a very real risk of also having GSD, that really leaves us thinking that now is a good time to stop – but you never know what the future will bring so it’s best to be informed I guess…
To be honest, we could both do without this trip, Donna is exhausted from 12+ hour days at the hospital, and I’m exhausted from trying to watch Liam, catch up on client work and keep things in order at home. It’s hardly going to be a carefree excursion to Melbourne and the most shopping that’s likely to be done is to pick up anything we need from the equipment distribution centre at the RCH.
No doubt we’ll have to fight patient transport here to get them to cover both of our travel costs, for some reason they don’t seem to understand that this isn’t just a simple case of one parent going and relaying information to the other – unless the state government wants to set up a specialist metabolic team down here they really need to be more accommodating for people whose kids have such rare conditions. I hate bureaucracies! I better stop now before my blood pressure goes up any more than it already probably is!