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So today as we are things are better. Ava is on CPAP all the time and is currently dealing with a lower right lung collapse. CPAP is helping and Iv antibiotics started yesterday. 

After expressing my concerns time and time again and often offending with the reality of the fact that care levels haven’t been adequate and I was at the end of being at this hospital with no more resources available things are changing. 

Pain is now being more mangaged with less ups and downs and more consistent medications with less changes. Having a good day or good 12 hours doesn’t warrant a dose decrease it means stay there and let things be comfortable. 

Avas pain is more tolerable and I am being able to position her better and more frequent. Still not pushing her. 

She is happy cuddling her baby doll today 

We also have more results in about her blood issues and they have found she does have a clotting disorder and we need to know how to handle this for up coming surgery: my understanding of the plan is that lungs need to be ready and blood as we have the ok from cardiology and neurology. 

Pain management will be ongoing with good and bad days as long as no big changes happen 

Her hip is so sensitive that even being in a wedge for stablization it slips out and dislocates – I have learnt how to put it back in place. Not nice at all but it does go very easily in and out. Just wish surgery was sooner. 

I would love to hear from Rehab team to see if they come up with any suggestions for the muscle spasms. She is already of diazapan, baclofen and gabapentin. 
Anyway thanks for reading will keep you posted 

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I'm a mum of four who loves my kids but juggles some amazingly hard battles with disability and illness with two of my children. Sleep deprivation, time and being Homebound you will hear about many issues I face daily but mostly with a positive view. I just need somewhere to vent So thanks in advance if you even bother to read my mumble jumble

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