Reflecting as today is 3 years since our sons cardiac arrest & due to lack of oxygen suffered a severe hypoxic brain injury. As those who know our story these years have been challenging to say the least. Must admit to having been a bit upset last couple of days and had a few tears. Very thankful though that son is being very well looked in his home at Hawthorns .He is very comfortable and on the medical side he is doing so much better. He is continuing to receive therapies so we still have hope for small improvements for him.
Our grandson ( he was 13 on Monday) came with us to visit his dad yesterday - he still finds this difficult and hasn’t been for some time. Visit went really well ( got some nice pics of them together) and know it will have given his dad a real boost. Son is non verbal now but can speak through his eyes & has slight mobility in his left arm so he gave a wink to say he had enjoyed seeing his son & enabled a small high five with him. I have such sadness when I look at them and think how different their lives are now but very proud of them both.
I am finally going to get my own health issue sorted out on 15th September ( initially told this would be before last Xmas) and are undergoing ‘robotic’ surgery in Freemans hospital for a Hepaticojejunoostomy - quite a mouthful but basically means bile duct resection surgery. So 🤞that goes well and I have a quick recovery then on we go with our ‘onwards and upwards’ approach as life is too short to dwell.
Take care. Nanapal x
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Nanapal
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I can only imagine your emotions Nan. Seeing both your son and grandson struggle, in their different ways, to be the best they can be must be be tough on the heartstrings ; as you say a mixture of sadness and pride..
I do empathise with your prolonged wait for surgery (really not a joking matter but the 'oostomy' term sounds like something from Monty Python !) But good luck for the 15th m'love ; I hope it's straightforward and fixes your issue (I struggle with similar since gall bladder removal).
I am sure once today has been and gone I will feel in a better place. As everyone on here knows brain injury from whatever circumstances is devastating for the individual closely followed by family and friends. We have been lucky to have good support behind us over these last years and are grateful for it as know many struggle on without it from reading posts on here.
Yes will be glad when I get myself sorted out or as best as I am likely to be due to this Mirizzi syndrome type 2 - 3 which is an extra complication I have. Freeman’s hospital in Newcastle is very good so glad they are doing it. Hope I am a good patient especially during recovery period at home as doing not a lot doesn’t come easily to me but I will do as I am told!
After surgery for a burst ovarian cyst I was told I must rest, so my mum bought me wool & knitting needles and brought a choice of patterns ! My son and daughter had new jumpers by the time I was mobile again. 😉 ....just a thought Nan ! x
Unfortunately I can’t knit - wish I could, maybe I can teach myself. Think it will likely be reading material for me in various shapes and forms. Also FaceTime calls with daughter & granddaughter’s always lift my spirits - two cheeky faces smiling & waving. x
You sound like me. I always listened to being told to take it easy but to be honest, I never listened and have paid for it time and time again lol! You'll feel much about things once you have your health issues sorted out and it'll be one less thing to think about. Cat x
Thank you for your wisdom Cat. Yes I will have to do as I am told as don’t want to set myself back - too much going on for me to be out of action for too long!
I am so sorry. Seven years ago my son also experienced a hypoxic brain injury after coding in the hospital. His son was 12 when it happened and their relationship has improved so much! I know I still cry when I remember how my son was before his injury too. Take care.
You really do have to be in our shoes to get the emotional side of this. I hope like your grandson ours can redevelop his relationship with his dad. I visit my son 3 times a week but can still come away some days with tears in my eyes. Having witnessed these emotions from his friends after visiting it is understandable how much a child struggles.
The anniversary day of the accident will always be a tough day. Mine was two years ago in July. So glad to hear that you're son is doing well. He'll get there wherever that is going to be and how long it'll take but you sound pretty upbeat and positive which he will sense. Seeing his son will help him massively and he'll look forward to more visits. Take care. Cat
Thank you again. I like your phrase ‘will get there wherever that is going to be’ - kind of sums up brain injury recovery since it doesn’t follow any definitive pattern. We have to keep the belief that life can improve for our son having already battled through so many setbacks we know he still has a lot of spirit.
Yes anniversary dates are not easy. It’s still hard not to go back to remembering what his, his son’s and our lives were like before his brain injury. I know it will get easier as time passes and acceptance of where we are now - which thankfully is a much better place. Hopefully the major battles we have had to go through are behind us and we can focus on going forward.
Glad to hear your progress, acceptance can take a while. U have a progressive attitude so hope things do get better. Had my Gaul bladder removed, was sinking a bottle of wine a day to deal with stress!! Good luck & please report both sons and yours!! Oh & smile to adversity!!
We are still not there with the acceptance part but are getting there. We will continue to ensure our son gets as much help as we can - hopefully without having to battle for it!
I had my gall bladder removed nearly 3 years ago and unfortunately had issues ever since due to my unusual biliary system. Hopefully as other procedures have failed to rectify my problems this long awaited surgery will do the trick.
Can't believe it's been so long already...what a journey. So good that things are starting to settle. Hopefully your grandson will be more up for seeing his dad in future, it's a tough time of life (our son is the same age).
Could I ask whether your son could use an Eyegaze type speech device? My husband has one through the NHS from a company called smartbox. One of the features is for those who can't use their hands, there is a feature which means they can type with their eyes.
Wonder whether this could be an option for him maybe?
It doesn’t seem like 3 years has passed to us. I think because we have had so many setbacks & battles going on life & time has just gone by us. As we are (touchwood) in a much more settled period we are much less anxious & not dreading the phone ringing with some kind of bad news.
Agree it is a difficult age and our grandson is by nature pretty quiet so doesn’t open up much about how he is feeling. We will support him and am sure he will find his way through.
I know the devices you mean as a couple of residents on sons rehab unit have them. Had discussion with speech therapist and she is still evaluating sons levels of communication. Using a board with yes /no words attached at different parts and asking him questions & following his eyes for answers. She said sometimes he is inconsistent especially when tired - she may arrive for her weekly session when he is fatigued. When I visit & ask questions ( I am there 3 times a week for around 4 hours each time ) so can always catch him at some wakeful times - he always responds correctly. Obviously that could be because he is more relaxed with me - speech therapist has said he is better when I am there. So maybe in time he maybe a candidate for that type of device 🤞.
Hi Nanapal, anniversary’s are always difficult as we remember life before, but we have to remember the struggle and how far they have come too, and for that we have to be greatful, your son has fought so hard to be where he is as your grandson gets older he too will appreciate that too. You have an amazing son and you are an amazing mum, don’t ever forget that. Lots of luck my friend on the 15th, I will be thinking about you take care love Alice xx
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