Putting things in perspective
- Thread starter Watty
- Start date
76masseyman
Member
- Location
- Lincolncestershire
bobajob
Member
- Location
- Sw Scotland
Best wishes to him and your family. Thinking of you.
itsintheblood
Member
- Location
- south west in over the knap
Best wishes to you all
Old Boar
Member
- Location
- West Wales
Glad things are progressing along the right path. If either you or Jilly would like someone to chat to, rant at, shout how unfair it all is, pm me for my number - happy to listen and help if I can.
Woolgatherer
Member
- Location
- Angus
I'm sorry to hear of your sons illness, it's always hard to see your child ill, no matter how old they are, I hope he continues to recover. Best wishes to you and your family.
Watty
Member
- Location
- North Devon, UK
Sorry for the late update today. No particular reason.
I am constantly humbled at Ben's ability to keep smiling every time we walk in to the room in the morning and throughout the day, a young man with an uncertain future and an inability to talk or communicate beyond squeezes. I know I would not have that strength of spirit were the roles reversed.
Yesterday he managed to lift his index and second finger separately on he left hand which shows us that there is a neurological connection to the ends of his arms. This with the thumbs up earlier in the week which was his right hand is good. The physios came and got him out into a wheelchair for a short period but he was tired by they had got him there and he wanted to go back to bed.
Today, I arrived again to smiles, not least because I told him a close friend would be coming in at 10. She stayed till 12 which cheered him a lot. The neurologist stopped by on his rounds to let us know that the CT scan was largely clear which is good news but doesn't move is any closer to a cause. They could see a couple of what might be fatty spots on his liver but they are not attributing them to his current problem. They may ultrasound his liver to be sure next week. His blood protein level is 84% which they are very pleased with as it means that the feeds he is getting through his NG tube are spot on, giving him the energy he needs to continue fighting this. He has finished the IVIG meds now so we have to wait a week while they do whatever they do before we will start to see the effects.
He had another visit from Leo, the therapy dog this morning which put another smile on his face. (Search
FB for Leo & Friends - Therapy Dogs to see what this lady does.
I am constantly humbled at Ben's ability to keep smiling every time we walk in to the room in the morning and throughout the day, a young man with an uncertain future and an inability to talk or communicate beyond squeezes. I know I would not have that strength of spirit were the roles reversed.
Yesterday he managed to lift his index and second finger separately on he left hand which shows us that there is a neurological connection to the ends of his arms. This with the thumbs up earlier in the week which was his right hand is good. The physios came and got him out into a wheelchair for a short period but he was tired by they had got him there and he wanted to go back to bed.
Today, I arrived again to smiles, not least because I told him a close friend would be coming in at 10. She stayed till 12 which cheered him a lot. The neurologist stopped by on his rounds to let us know that the CT scan was largely clear which is good news but doesn't move is any closer to a cause. They could see a couple of what might be fatty spots on his liver but they are not attributing them to his current problem. They may ultrasound his liver to be sure next week. His blood protein level is 84% which they are very pleased with as it means that the feeds he is getting through his NG tube are spot on, giving him the energy he needs to continue fighting this. He has finished the IVIG meds now so we have to wait a week while they do whatever they do before we will start to see the effects.
He had another visit from Leo, the therapy dog this morning which put another smile on his face. (Search
FB for Leo & Friends - Therapy Dogs to see what this lady does.
Tha Ulsterscot
Member
- Location
- Greyabbey Co. Down.
We have a son the same age, and can't imagine what you must all be going through. Our prayers and thoughts are with you all hope he keeps improving, Paddy.
- Location
- Near Beeston Castle
Keep in there Watty.
Good to hear he greets you with a smile, it must be hard for you to keep smiling too.
Best of wishes to you all.
Good to hear he greets you with a smile, it must be hard for you to keep smiling too.
Best of wishes to you all.
GenuineRisk
Member
- Location
- Somerset
Just seen this thread and would like to add my best wishes to his recovery. Have heard of a similar case to your son's several years ago and, while the road ahead might be quite a long one, they did make a completely full recovery - afraid it was a friend of a friend of a friend who I lost touch with but it was neurological and a case of the pathways slowly healing if I remember correctly.
- Location
- hereford
Keep smiling for him and best of luck.
- Location
- Wales
Watty
Member
- Location
- North Devon, UK
Big day today because its Ben's birthday. Not the best or easiest place to have a party but we're doing our best with Ben doing some really impressive things!
Arrived to smiles today. He managed to pull his NG tube out overnight. This is the tube that goes in his nose and down to his stomach. We opened cards and Ben managed to open two envelopes himself. He touched his nose with his finger!!!! Stood up in a frame and into wheelchair for road trip round the hospital - out the back entrance into the sunshine them back along the corridor to the canteen, then along to the lifts up to ground floor, along the corridor to the north entrance then outside for more sunshine. Back up to his ward then. Jilly went to get tea and I asked him to say Ben, AND HE DID!!!, sounded a bit like a bubble breaking surface but Ben it was. Then later said DAD!! Had some yoghurt by mouth and milkshake but his muscles are still a bit weak so his NG has to go back in. Massive day for Ben, went from baby steps to a huge, massive leap forward! We should have been giving him presents but instead he has given us some great ones!
Today is the first time in 19 days that Jilly and I think he's in with fair chance of getting back to normal.
Thanks for all you great comments, I know I've not been good on posting but we have a bit on!
Arrived to smiles today. He managed to pull his NG tube out overnight. This is the tube that goes in his nose and down to his stomach. We opened cards and Ben managed to open two envelopes himself. He touched his nose with his finger!!!! Stood up in a frame and into wheelchair for road trip round the hospital - out the back entrance into the sunshine them back along the corridor to the canteen, then along to the lifts up to ground floor, along the corridor to the north entrance then outside for more sunshine. Back up to his ward then. Jilly went to get tea and I asked him to say Ben, AND HE DID!!!, sounded a bit like a bubble breaking surface but Ben it was. Then later said DAD!! Had some yoghurt by mouth and milkshake but his muscles are still a bit weak so his NG has to go back in. Massive day for Ben, went from baby steps to a huge, massive leap forward! We should have been giving him presents but instead he has given us some great ones!
Today is the first time in 19 days that Jilly and I think he's in with fair chance of getting back to normal.
Thanks for all you great comments, I know I've not been good on posting but we have a bit on!
annonimouse
Member
Good to hear you've had a good day. Onwards and upwards. Best wishes. X
+1
- Location
- Hertfordshire
Brilliant progress. He sounds determined, good luck to you all.
Perspective indeed.....Best wishes and support, we're all rooting for the fellow.