3 replies to this topic

[jeannie061]

this is my 1st posting here. my 16yr old son had spinal surgery 2mnths ago during which they lost the motor function during the op. it was so heartbreaking to see him in icu. he couldnt understand why he couldnt move his legs. he then went downhill more when his kidney(he only has one)started shutting down it was then discovered that he had a metabolic disorder once he was put on the right meds he started recovering again.10 days after surgery it was decided to go into surgery again to finish the spinal fusion and see if the spine was being compressed or if there was anything else they could do for him.another long day waiting for surgery to finish. 5hrs into op we got a call to say they got the motor function back again on the monitors. for three weeks seamus still couldnt move his legs although he never lost sensation and he had terrible spasms.seamus is a great character and this really helped him the physios left him every day with smiles on their faces. 4wks after surgery he moved his toes slightly the strain on his face when he tried but he did it. they removed his catherer but within 3hrs he was screaming in pain with bladder retention they had to put it back in again. nxt he was able to flex the muscles in his right thigh, grt excitement... seamus was put on the tilt table he went lovely shades of grey. the nxt wk he was on his tummy on the plinth and the physio said nxt wk when i have someone with me i want u to do this showing him how to get from lying on his tummy to like a crawling position like this said shay and started doing it himself. we were so excited.the movement has come back stronger 2 wks ago they stood him up with 3 physios holding him. last wk they stood him at parrallel bars. last fri they removed the catherer again he didnt want to drink he was so scared. he went to physio they walked him up the bars. can i do it again he says. so they got him a pulpit walker. he walked down the corridor with a lot of help. the ot came out of his office with his eyes on stalks. no one can believe this is happening so fast. seamus went back to his room he still hadnt gone to the wee. the nurse said can u just try it was 5 hrs since the catherer had been taken out. we gave him a bottle under his blanket. he says mam i think im going i said i can hear it. great excitment i took a pic of his bottle of wee and sent it to his dad. we celebrated him walking (with a frame and three physios) and weeing with a chinese takeaway. yesterday he walked up and down the corridor with 2 physios holding his elbows.his right leg is making funny shapes but who cares. he hasnt gone to rehab yet that is nxt wk and the progress he has made in the last 4wks. we are so happy for him. the last two months have been so hard on seamus but not once has he complained. he has a grt sunny outlook and i am so proud of him. nxt wk when he goes to rehab he will hopefully get stronger and stronger. thanks for putting up with my ramblings but we are not in such a dark place anymore and i needed to write this down and share our story....

[Simba]

That's fantastic. He has regained so much in so little time, let's hope rehab goes really well and he continues to improve.

Thanks for sharing.

[goose]

WOW...this is great news. He's very lucky to have made such great progress this early. I know you are proud of all his accomplishments. Please let him know I'm proud of him too.

I bet you never dreamed that a bottle of wee could make you so happy. The little things we used to take for granted are now hugh mile stones worthy of celebrating. Hope yall have many more parties ahead.

Keep up the good work and keep us updated.

[Tatiana]

I am so pleased for both you and your son.

Its must be heartbreaking watching your child go through so much but then excilerating (prob spelt wrong!) to see the improvemets/progress he is making.

I too, hope he continues to make progress, it wont be an easy road but sounds like his personality and character will help him through along with his loving and supporting family.

Take care