Author: beingmumcarerprotector

When our strength fails us and we crash.

What happens when we fall apart ? I noticed with me that life goes so fast but over the past 12 months things slowly were getting harder to manage. My tiredness was much worse my eating habits up and down and mood swings around. I was so tired I couldn’t fall asleep and I found my head racing round hours after hours then suddenly I had fallen asleep and my alarm would wake me for next dose of meds for A. I don’t even think adrenaline was even keeping me going. Seizures increased to daily over and over. It became so often it was the Norm. Fear increased with this. I tried to avoid the negative thoughts time after time but they were there sitting on my shoulder reminding me daily. It was like hearing a second voice. Love is why and what keeps me going. Last year was super challenging. Besides raising two sick kids and one declining so rapidly in front of me I’m also mum to teens. 19, 16 year olds. Learning …

Celebrating small victories

Today whilst having lunch with eldest daughter I realised what we were talking about wasn’t the normal kind of conversation many have. We stopped both staring at each other and just laughed and laughed almost to tears We were celebrating how wonderful it was that Ava had done a poo yesterday and the fact she had done it while sitting in the wheelchair. She has so many issues and pooping is huge: so eating san churros and talking poo seems fine: That’s the thing with chronic illness you really have a different level of what’s important and your priority list is fully different to a normal person. I also find myself joking inappropriately to normal people who don’t get the jokes we make at home- maybe we are all mental now living in such a highly stressful unpredictable life we all went crazy and make everything funny now. Well if that’s the case good shit I say! Rather laugh than cry …. I really think I swear a lot more to nowadays. I’m so over …

Me deleting myself

Well some close to me know that when things are tough for me I delete myself from all forms of social media. Recently I landed in hospital when away for the long weekend. I was in sever pain and was transferred to another hospital down south coast of Australia. Originally thought it was appendix but it wasn’t all I was told was they found a small tumour and to follow up with local doctor. Ok whatever what the fuck and discharged me. Anyway that day drove back home and still was having pain so booked in to Gyno. He had a available appointment the following day. I explained to doctor the pain and he did another ultra sound he said no that small so called tumour is a fibroid and it wouldn’t be causing you this much pain. He thinks it was a urine stone like a kidney stone. Anyway I trust this man and was instantly relaxed. Managing the kids while being sick was so hard. Then juggling stupid Facebook and Instagram I couldn’t …

So fuckerty fuck !!

Fuckerty fuck!! I am so run down at the moment. One thing people don’t realise is how it creeps up and bang knocks you for six. This year I have been running round doing a lot more than usual as I’m usually sitting next to Ava bedside in hospital. I have been racing round doing school drop offs, meetings, therapy, doctors, meds pick ups and swimming lessons and dinners and house hold crap and challenging teens and driving lessons and now after Ava’s last emergency admission two weeks ago I have a cough and cold. Poor me I say but tough shit no time for rest. Get those cold and flu tablets in you and keep going. I feel so old at the moment. 38! So exhausted to the point I can’t fall asleep. I have found that even at 3am if I’m laying in bed I grab a book and read. It’s helped me a lot. See I never find time to read for leisure. I even managed to Finish the 350page book woohoo …

2018 a new year

Hello 2018 We welcome a new year fresh with positive vibes and good thoughts. Last year was so hard and we didn’t get to update. We finally had spinal fusion two rods and successfully got through it / 8 days on life support before we decided to breath on our own and 6liters of blood loss but all good. Hips redone and bones healed. Epilepsy on the other hand has been the naughtiest !!!! Daily seizures. And a new non convulsive status we hadn’t seen which was happening almost daily – very frightening but thankfully at the time we were in hospital. It was one of the main reasons spinal surgery was cancelled three times plus the lovely melena – internal bleeding we seem to get. Since the last bleed I decided to change things myself. I took her off omeprazole and changed her to infant formula A2 milk I had been reading up about long term ppi use and how it actually can cause bleeds. Anyway after a month we had a review and …

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. …