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Goal in sight 

We have a date !!!  A surgery date, 8th march so not long to go. The surgeon worked so hard at getting a time slot long enough to get this done a lot earlier and knowing more work than anticipated is required.  Surgery is extremely dangerous but living with this amount of pain daily with such instability in the hip is torture. There isn’t one single move or stretch that Ava can do without creating massive pain or re dislocation. It literally is in and out.  We have worked out now that no amount of meds will take pain away so just trying to manage now as best we can. She can go a long time some days without hurting as much but then it catches her. Trying to keep a steady amount of control on meds is a must.  We are still waiting results on the bloods Ava and I had done last week to find out what is going on with the clotting. I have always had complications after surgeries bleeding and slow …

Progress

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 …

No improvement 

Things are declining …… Ava is now not breathing well as both lung are not coping Temp rising Her body weak and sore Pain still but because she is sick she seems to be less whingy I let it all out again to the teams about not being happy with her care and how it’s not addressing her issues and it’s beyond cruel. I said I want changes today as enough is enough My beautiful child doesn’t deserve to suffer. She wouldn’t hurt a fly. A normally healthy happy yes quadriplegic child without a tear on sight … crippled by pain and now illness creeping I told them her lying down waiting for surgery week after week would create further issues like pneumonia Am I ever heard ? Does anyone even care ? Or is this another to hard basket ? I won’t stop battling and I will not say ok to something so cruel as to watch and see I’m so thrilled with all the support from people reading and wanting to know how …

 Things need to change 

Things neeed to change on how we assess a intellectually disabled child with complex medical issues in pain.   I’m beyond exhausted after battling daily for two weeks after my beautiful 8 year old Ava has been admitted for pain management for a dislocated hip.  The way a child is assessed for pain is totally not acceptable for a child with such great physical and intellectual disability.  My child can go a year not crying yet needs to show physical signs of distress to warrant a press of morphine.  She has been self harming by hitting her hip and hitting her head, pulling her hair out, crying and biting her fingers, red faced tensing. This child is normally the most settled easy going child, doesn’t even budge or flinch with blood tests.  Yes she feels pain but has a different yet delayed response. The suffering she has experienced mainly in the past 24 hours has made it to her 5 worst days of her life list. I wouldn’t let my pet suffer the way she has. …

Pain management 

So after after an awesome 12 months we have managed to bounce back to the world of hospital. One afternoon during Avas normal routine I lifted her out of her wheelchair and went to place her in her bed and she cried when I went to lower her legs. That was the beginning of this new journey we are currently on. A child who was not on heavy pain medications for over three years was now needing the ambulance to give her morphine and fentanyl to even touch her and transport her to hospital. At hospital she was re xrayed and doctors reported a sub luxed right hip. She is already booked to have her right hip re done in 8 weeks from this point. And it wasn’t giving us any pain during the past even though it was sub luxed. We were admitted for pain management – orthopaedic team was contacted to give a heads up she was in. Mind you we are in a different state to where we receive surgical intervention. Three …

2016 

So 2016 busy yes very however I would have to say the most successful year health wise.  Ava didn’t catch a flu or cold and poor wil was sick with every cold for months and months.  The biggest issue we faced was the on and off gi bleeds with Ava and her needing blood transfusions and then the complications that came with that * this has no been an ongoing issue for two years.  Christmas is here in a few days and we are so excited. I have managed to lose 50 kilo this year and feeling so amazing and full of energy. I hadn’t had time to focus on myself or even want to think about all the reasons I was turning to food but having Ava have such a good year allowed me to as well. I had seven years of overeating and grief there I wasn’t dealing with.  I can honestly say wow I shocked myself with the fact I found time to think of me. I had gastric sleeve surgery to …

Busy times 

It has been such a busy time I have yet to post in a long time.  Life is good and life is busy. Kids have been well and we are enjoying school holidays. Winter time and it’s a wet winter.  Ava has turned 8 which was such a wonderful celebration and one I thought would never happen.        We have had time to go to movies and enjoy the daily day to day life. Hospital visit are minimal and Avas port is going well.  Master W is going fantastic and so full of energy. He has loved attending school yet missed a lot this winter due to catching many common colds.  Parents don’t realise how sending their sick kids to school can seriously have major consequences for our chronic illness kids. I wish they could sometimes stop and see how one cough or cold could lead our child into a Icu department and on life support.     I have managed to find time for myself and start looking after myself. This year I have …

Prep for the next stage 

How do we prepare ourselves with facing our biggest fears?  My sons open heart surgery is coming up and yes he has had years of surgeries and faced many medical hurdles cardiac wise however this time round this one really is hard.  I feel bad for accepting the actual date of surgery thinking what if something goes wrong and it’s all because I picked the wrong day. What if I decided to postpone for another few months. The what if’s drive me insane.  Then I think I end up self talking myself into accepting this and positive thoughts flow. It’s such a strange mixed up emotional time.  Packing and writing practical lists helps. Focusing on the practicals probably makes you survive these tense unknown times.  Planning beyond the surgery date is non existent, it’s like life stops that day until we know how surgery goes. Not one appointment or social activity had made it to the diary.  Lift literally stops on that day. It stops as long as the critical faze of recovery takes. Being …

We did it 

woohoo !!!!!!!  We did our two week road trip up to Queensland.      Wonderful times fantastic conversations and no internet for the kids. It was truly a wonderful family holiday.  We had everything against us with the kids father having two shattered arms in plaster and having two sick/disabled kids to care for but master almost 16 was an amazing help. He did all the trailer connecting and Heavy lifting. Didn’t complain at all.  We live in such a beautiful country surrounded by sugar cane plantations banana crops macadamia crops and beaches and cattle. It is truly a beautiful experience driving around this country.  It has inspired me to want to live more free and de clutter and stop wasting money on stupid non useful things. It has shown me that children adapt so easily as long as you prepare well from the start.  I am well use to packing for trips to the hospital and long term living out of a bag and never pack to much but know to pack certain items …