This post was first published at our sister site INTENSIVECAREHOTLINE.COM a support and resource website for Families of critically ill Patients. On this website, we also have a “your questions answered” category, where we answer questions of our readers on a weekly basis. You can find more about “Your questions answered” section here!
My sister has been in ICU for 21 weeks following septicaemia following open heart surgery. She is 49 years old and has never been to hospital before. The whole time she has been fed through an NG tube, she has a Tracheostomy, she has being kept on a ventilator overnight and she has had 14 surgeries. She was doing quite well but after removal of the Trachea for a short time (and failure after an hypoxic event) she has required re-intubation. She is, understandably depressed, anxious and has almost lost the desire to fight. We are trying to motivate her. We have put together posters with inspirational quotes and family photos with messages of love. Do you have any suggestions of what else we can do. It is heartbreaking to see her so low. We understand why. Would love to hear any suggestions/ideas?
Thank you, Claire, Sydney, Australia
thank you for your question. I am very sorry to hear about the ordeal that your sister and your Family are going through.
Let’s look at the positives first. Your sister has never been hospitalized and is quite young at the age of 49. The other positive is that she has a supportive family who is looking for options and is seeking out for help and you are encouraging her. Keep doing that as a starting point.
It’s almost unbelievable that she has had 14 surgeries within 21 weeks. Now, let’s look at the negatives and the things that very likely stand in the way of your sister’s recovery.
It’s a massive dilemma for every long-term Patient in ICU and their Families to have no or very little Quality of Life, which is leading to depression. The depression often leads to the ventilator dependency and vice versa. It’s a massive challenge and it’s a vicious cycle. On top of that there is the lack of privacy and the lack of dignity in Intensive Care and other people are running the show. You have already touched on what you and your Family need to continue doing, such as motivating and inspiring her and the family photos. Other practical steps would be to look at continuity of care such as
– having regular and experienced nursing staff looking after her(some units have a tendency to let their junior staff or agency staff look after their long-term Patients, as the more experienced staff tend to look after more acutely unwell Patients)
– making sure she is getting natural daylight such as having visits outside as soon as her condition allows
– can your sister get a quiet room with natural daylight or is she exposed in the middle of a busy unit with no natural daylight?
– making sure that the medical staff are on top of things, again some units have the tendency to almost neglect their long-term Patients, because the staff are getting frustrated as well
– ask the medical/nursing staff whether your loved one might be better off with antidepressants in the interim. Antidepressants are not a long term solution though
– no matter how difficult the situation, stay positive, your sister will feel the positive vibes coming from your family
– the longer your loved one stays in ICU the higher the risk of her catching an infection, therefore a side room with no exposure to other Patients and therefore bugs might be an advantage as well
As far as her Tracheostomy goes, again it’s nothing unusual in Intensive Care to see Patients having failed attempts to wean them off the ventilator and the Tracheostomy for the reasons I that mentioned.
Depending on where you live, you might also consider external specialized services such as INTENSIVE CARE AT HOME. There are services available in countries such as Germany, USA and Australia who focus on weaning long-term ventilated Patients in the home as a genuine alternative to a long-term stay in Intensive Care, generally with a focus on Quality of Life for Patients and their Families. You can find more information at https://intensivecareathome.com
I have also sent you three more reports for you that we tend to send to our Clients if they enquire about similar issues. The reports I attached are
– “6 answers to the 6 most frequently asked questions, if your loved one requires ongoing mechanical ventilation with Tracheostomy in INTENSIVE CARE”
– “Follow this proven system to avoid the 3 most dangerous mistakes you are making but you are unaware of, if your loved one is a long-term ventilated Patient with Tracheostomy in Intensive Care”
– “Follow this proven 5 step process on how to be in control and influential if your loved one is a long-term Patient in Intensive Care or is facing treatment limitations in Intensive Care”
I hope that helps and please let me know if you have anymore questions. We have also more reports available such as “The 5 things you need to know if the medical team in Intensive Care wants to limit treatment, wants to withdraw treatment or wants to issue an NFR(not for resuscitation) order for your critically ill loved one in Intensive Care”
If you are interested in some of the reports that I mentioned above, send me an email to [email protected] and you can request those FREE reports.
You can find the original post here http://intensivecarehotline.com/my-sister-has-been-in-icu-for-21-weeks-with-tracheostomy-and-still-ventilated-what-do-we-need-to-do/
Send your questions to [email protected] !
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Thank you for tuning into this week’s episode of “your questions answered” and I’ll see you again in another update next week! Make sure you also check out our “blog” section for more tips and strategies or send me an email to [email protected] with your questions!
This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!
Sincerely, your Friend
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