It’s been a pretty hard 48 hours, but here’s a nicer moment from yesterday after Bathtime. Since we arrived Sunday, we’ve had what we call a ‘special’; which is where a nurse is designated to sit in our room 24 hours per day, while we sleep, feed etc.
Initially I was quite uncomfortable with this arrangement but Monday was hard. Very hard. After about midday, Levi’s neurological episodes ramped up & came one after another for a couple of hours. He needed 2L of oxygen & was still struggling to get his breath. One episode lasted 5 minutes. I am so thankful now that we had such beautiful nursing staff with us. Not only did it help when the doctors came, to have it all recorded & observed, but it also helped to not feel so alone in all of this uncharted territory. .
Yesterday afternoon we finally got some clarity when his neurologist came & confirmed that these episodes are directly related to hyperekplexia. Since increasing his oxygen helps, but doesn’t always resolve them, we are introducing the ‘vigevano manoeuvre’ which is recorded to help in stop these hypertonic attacks when they occur. Slight issue is that no one in the hospital knows how to perform the manoeuvre, so we are back to consulting doctors interstate & overseas trying to get more clarity around a management plan for Levi. .
On Monday evening I spoke with one of Levi’s neuro geneticist doctors in London. They have very kindly offered to speed up their analysis in order to help. They also gave us details of a movement disorder specialist here in Sydney who has a lot of knowledge on the disorder. We will likely make a trip to Sydney once he is stable to meet with this doctor & see if there’s anything he can add but also so that he can consult with Levi’s other doctors here in Brisbane if things get a bit tricky. So we are still here trialling a meds increase, waiting on some results from cardiology & ensuring that we have a good plan to go home with. .
#mumlife #hyperekplexia #instamums #muminspo #mummyblogger #mamalife #children #babylife #instababy #babyspam #motherhood #motherhoodrising #motherhoodunplugged #newborn #littleandbrave #tinyhuman #WMkids #mightyable #laryngomalacia