Latest update on son

[Nanapal]

Hi all, some good news & some bad.

First bad news - since my last post son has had further problems following catheter insertion error. He had quite a lot of bleeding & discharge which resulted in a 14 hour stint in A & E & urgent follow up referral with urology. Falsepassage way error had resulted in small hole which had formed a collection of infection which could be felt on examination. Just had 2nd urology appointment at hospital today and infection almost cleared but hole/crater not yet completely healed. Dr did another catheter change via camera vision and prescribed further dose of antibiotics. They will also do the next catheter change and then when happy injury area all healed son will have a supra - pubic catheter inserted . This type apparently will eliminate any future problems.

‘Good news 1’ following son’s pre assessment for Baclofen pump surgery we had follow up appointment with consultant yesterday. She is looking at doing procedure in next 4-6 weeks so just awaiting appointment to be issued.

‘Good news 2’ aside from catheter issue son has continued to be doing well since trachy was inserted on 1st December. Maintaining stats really well, no chest infections, respiratory issues, no seizures and son continues to look much brighter and more comfortable.

Onwards & upwards we go.

Best wishes Nanapal. x

[Leaf100]

Hi Nanapal,Bumps in the road and progress, you are staying focused on the positive or doing a fine job of faking it... which sometimes is what we do to get through...

It's not easy for sure.

Glad to hear the news is mostly positive and steps are being taken to keep him going in a good direction.

Be sure to take care of you, too.

Big hug to you,

Leaf x

[Alibongo60 in reply to Leaf100]

Hi Nanapal, some brilliant news in there and your son is brighter and more comfortable, is worth a fortune, it must be quite a relief and be able to relax a little. Keep going onwards and upwards love Alice xx

[skydivesurvivor]

excellent!! Hope his recovery continues!! Wishing u all the best, please continue with news?!!

[cat3]

Thank god your son has come through that awful catheter crisis ; it shouldn't have happened (not helpful I know 🙄) ...but what a fighter he is.

Going forward it seems everyone's working in his best interests and it's starting to show. Fingers firmly crossed for the Baclofen pump to be fitted soon and for yet more improvement as a result !

Thanks for the update Nan ; I'm sure you're heartened by these latest events..

Cat Xx

[Nanapal in reply to cat3]

Thank you to everyone for your replies they are always a boost. Leaf100 you are very astute - on occasion I can sound more positive than I am feeling . Presently I am genuinely feeling son is in a good place and we are progressing in the right way. We are looking forward to son undergoing his long awaited procedure and once recovered getting him out in the garden areas as much as we can throughout the coming months in his comfy chair.

I am also feeling and sleeping much better as my level of anxiety has greatly reduced now son is improving. I am also a step nearer my surgery following tel call with consultant last week. I am awaiting my appointment date which he expects to be in next couple of months. Onwards and upwards it is then for both son & I!

Thank you again & best wishes to you all. Nanapal x