Author: beingmumcarerprotector

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 …

Honesty at a price 

        I came across an uncomfortable situation last night whilst in hospital with my daughter.  It was shift change and all was ok, I hadn’t met this nurse we had before and as a long term chronic child parent you tend to know almost all staff. Anyway all was ok when she introduced herself and then the following hour It started  She came in to do observations and said oh I don’t need to be in here only every two hours so I will come in once every four hours, I said so how do you figure that’s ok? My daughter is internally bleeding and in high care ward so how is that ok. Can you double check with doctors?  On return she came in with the scheduled medications for that time and I noticed her hands shaking, she grabbed at my daughters stomach tube and cannula (drip) and wasn’t sure what to do.  My heart sank ! I felt instantly sick with worry .. I watched carefully waiting to see if she would …

Hard times 

Things went from great to worse so quickly. We had a great run for about five months with the seizures and it’s never ever been like that before.  My daughter had managed to come off the heavy morphine and Valium and things were getting so much more comfortable.  Then ……  Seizures start again and in a 24 hour period things change  Three seizures within six hours and then a big bleed in her nappy. Scary stuff black maroon tary red blood Poo. Large amounts.  We take her to hospital where more bleeds continue and on arrival hb count high 150’s the next day after three more bleeds.  Hb 90  Following day endoscopy where the camera goes down her throat to look at her stomach and just through and they can see inflammation but not enough to be bleeding that much from below. They then do a meca scan to scan the lower intestines and after an hour still no signs.  More bleeds and then  Her gastrostomy peg ( she is fed through a tube into …

Hope

In the past week I have had a door of hope re opened.  I have taken master four for a cardiac cath and have just found out that his heart pressures are good and there is a window of opportunity open to go have his next surgery.     Yes Woohoo!!!!!  Even if the procedure/ operation is a variant to the full one I’m so happy. This means hopefully if things go well he will have more energy and be able to breath better. And the biggest thing will be having more certainty his life will be longer.  I had built myself up to expect bad news as the cardiologist had prepared us for many years to expect the worse. And since my son is so blue and puffed all the time it wouldn’t of surprised me if it was another bout of bad news. But this shocked me. I felt like saying to the doctor “are you sure you have the right family ?”  An amazing feeling when you don’t have to follow through on …

The unknown or the Unspoken

Is a life like mine a life people would prefer not to acknowledge? or is it so unheard of that its all so new ? Or do you hush and don’t mention it?   I often think back to when I had my first baby and how I actually did worry I would have a baby who had  a disability. Many people say it never even crossed their minds the thought of having a sick or disabled child. I did and I’m not so sure why this happened but maybe two reasons and one was I have a disabled aunt and I had lost my first pregancy. So I was somewhat aware of that kind of world.          But nothing and I say nothing can prepare you to the hospital world of seriously sick babies and children. No word No gesture No nothing can prepare you.  I felt so  thankful to be born and to be giving birth in this beautiful country where we had facilities to cater to such unique disease/illness. Thankful …

Letting people help 

This week has been a huge change to the normal routine as I have been receiving respite everyday for several hours.  This first week involved getting to meet the carers involved in A’s team and Master 4 team. A had a higher intensity care level so she needed more workers to rotate on her roster.  I have spent my days enjoying talking with these lovely carers and teaching them how I care for the kids. Miss A has managed to sleep in everyday which has given me the opportunity to get to know the carers.  It’s a weird feeling knowing I’m allowed to receive help everyday when I have gone so long doing everything the way I do myself. I felt guilty the first few days and I managed to go to lunch two days. My daughter probably had no idea I had even left for an hour. She was happily being kept comfortable and being entertained.  Finding a carer that fits in wasn’t a hard task as I thought it would be. One key …