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So Wednesday night Eloise had an overnight pulse oximetry done at home. Although we use our own Nellcor pulse ox, it doesnt print overnight results on a graph/chart like the one from the hospital. The Results were great, only 0.4% of the night spent under 90%!!! 53.5% spent between 90-95 (steadily at 93), and the rest in OVER 95! amazing! Her Heart rate was good also, Between 80 and 90 bpm 80% of the night.

We will have an excercise oximetry done next week, which im eager for! Last time her resp team were a little dissapointed by her results as they werent as great as they had expected, but i’m really hoping she has improved since then, and will be allowed a little time off the oxygen.

I currently allow Eloise to have one 30 minute interval off the oxygen per day, to play freely without the cord. The resp team were adamant about keeping it on especially when excercising, and that she can have it off when doing quiet activities like watching tv of having a bath. But whats the point? It doesnt bother her when shes watching tv, she wants the darn thing off so she can run free! So ive basically taken their instructions and turned it on its head. I wonder how the team will respond to my “customising” of their instructions.

Its my gorgeous husband’s birthday tomorrow, and I havent bought him anything but a card. Our finances are so stretched at the moment we have had to ask for help from charities to even get to Sydney.

Thankyou to Country Hope, St Vincent De Paul, and Commonwealth Carers association.

It is hard to admit to recieving help. From the exterior i’m sure people have a hard time understanding how we can be in such dire trouble from the exterior. We have a relatively nice house, drive a relatively nice car, and my husband works 40-50hrs per week. But to put it into perspective, we take out loans to pay for medical expenses. My husbands work has cut all overtime. Michael had surgery on the 30th June, and had to take 2 weeks off work. Then I had a test 11th July- in Sydney, 6 hours away. Then I had more tests at home, and more tests and procedures in Sydney, 5th August. On monday we will be going back to Sydney for the week for Eloise’s admission. It feels like we have been playing a balancing act for some time now. And were finally starting to fall.

For anyone who is new to Eloise’s Story, Check out Eloise’s Story so far.