Confused and Frustrated

[VW_Camper]

My 35 year old son has now been in an induced coma in ICU since 20th October.

(Not Covid related)

He collapsed at work, went into a seizure which lasted over an hour. Whilst in the seizure he was sick and inhaled the vomit into his lungs which has caused an awful lot of damage.

He has had numerous CT scans, Lumbar Punches and an MRI scan, of which they can not find any cause.

He keeps spiking temperatures and they say he has infections but have no idea where they are. Many different antibiotics have been tried but to no avail.

As his lungs are so damaged they prone him at night (tummy time!) which helps with his oxygen intake but when they turn him on his back he then requires more.

As a family we are so frustrated that they can not find any solution to this mystery infection. We keep looking for any causes or solutions that the hospital may not of thought of. It is so heart-breaking not having any answers after so long.

Has anyone been through something similar that could offer any support?

[Copse77]

I am sorry I am not able to help. Remain hopeful for a recovery for your son. My younger brother was put in on a ventilator in an induced coma and then on ECMO machine to rest his lungs that were failing along with other organs. He did go onto recover but in his case sepsis from flu affected his lungs. I hope your son recovers. Thinking of you.

[VW_Camper in reply to Copse77]

My sons team had been in contact with the ECMO team and it looked like he was going that way but after seeing some progress with the proning they decided this was not the right treatment for him. Today they have taken a bone marrow sample looking down the auto immune route which we really really frightened about of one of the consultants has said the steroids could either kill or cure him.

[Sepsur in reply to VW_Camper]

The consultants seem not to be able to consider the effect of their words sometimes, take comfort that your son is being looked after by the best possible people. The root of my 90 days stay became apparent as the found a type of leukaemia that had caused the rest

[Grant_za in reply to VW_Camper]

Perhaps the consultant could have done a better job in explaining the situation to you.The steroid treatment is almost paradoxical.

Briefly, very very briefly - the use of steroids suppresses the immune system:

As a result of the suppressed immune system steroid based treatment has created, there is potential to cause increased levels of infection

However, and "paradoxically", that same suppression of the immune system can bring an over responsive autoimmune reaction to infection, back under control.

You need to take the above simply as an explanation for the "kill of cure" comment by the consultant.

More importantly, try get to speak to someone on your son's team and have them explain the situation with your son. In dealing with infections, each patient presents various (or range of) symptoms, and the course of treatment for each (patient) can vary quite significantly.

[Copse77]

As Sepsur said the impact of words fromThe consultant is profound. They don’t always realise how this impacts on families. You can always ask for more information and explain how it’s frightened and upset you.