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This blog post was first published at our sister site INTENSIVECAREHOTLINE.COM a support and resource website for Families of critically ill Patients
My 42 year old son has been diagnosed with Guillain-Barré Syndrome syndrome 3 months ago and he initially was admitted with a severe Pneumonia, probably due to the weakness of his breathing muscles. He therefore ended up in Intensive Care as he needed to be ventilated. My son then went through a couple of failed attempts to be weaned off the ventilator, with the result of having a Tracheostomy and he is now, even after 3 months still ventilated and he has hardly had any time off the ventilator.
Initially, he also had some blood products to treat the Guillain-Barré syndrome.
As I said it has now been 3 months, since he has been admitted to Intensive Care and him, my wife and the rest of the family are so frustrated by the situation that he can’t leave Intensive Care as yet!
The doctors and the nurses are telling us that he needs to be off the ventilator first before he can leave Intensive Care.
But he is awake and he has been out of bed a few times, but we believe the Intensive Care environment is making him lethargic and depressed and he is often just staring at the walls in his room and when he is mouthing words, he is always saying that he wants to go home! We don’t blame him as it is very frustrating for us as well to go to the hospital every day and visit him in an environment that we don’t think is conducive for his healing. What do you think the options are and what do you think how much longer he needs to stay in Intensive Care?
We have heard from one of the nurses that there are specialised health services in some areas, looking after ventilated Patients at home, but we also know that they are not available where we live.
Con, Toronto, Canada
Thank you for writing in and thank you for sharing your story.
It must be very hard to watch your son suffering in Intensive Care for such a long time. And you are absolutely right, the longer your son stays in Intensive Care, the more lethargic and depressed he will get. Guillain-Barré Syndrome may not necessarily require Intensive Care therapy, but if it does require Intensive Care and ventilation(around 30% of Guillain-Barré Syndrome Patients require ventilation), it can in some cases develop into a long-term stay, because of ventilation.
Now, the good news is that most Patients diagnosed with Guillain-Barré Syndrome are fully recovering, even though it can take months or sometimes years.
In your son’s case it sounds like getting out of Intensive Care would be the best thing for him to do,(visit https://intensivecareathome.com for specialized home care for ventilated Patients) however if service availability for home care or Intensive Home Care services are not an option in your area, you might look at things such as
• Making sure your son has a room with natural daylight and a side room as well, with no exposure to other Patients bugs, as the risk of catching an infection is high the longer your son stays in Intensive Care
• He develops a natural and healthy day and night rhythm, by having activities scheduled during the day such as mobilisation, sitting out of bed and Physiotherapy
• Make sure your son has regular and experienced nursing staff looking after him
• Make sure he gets regular showers- your son can still have a shower while he is ventilated and you’ll find that having regular showers will make a big difference to his well- being
• Is your son getting antidepressants? Sometimes getting antidepressants can help in order to cope with the difficult and challenging Intensive Care environment?
• Make sure that the Intensive Care team is paying enough attention to his needs. Sometimes, especially after a long term stay in Intensive Care, the Intensive Care team also has a tendency to get frustrated with a long term Patient and they therefore do sometimes not pay enough attention to the Patients exact needs
• 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”
Send your questions to [email protected] !Also, in order to learn quickly how you can take control, have real power and influence decision making while your loved one is critically ill in Intensive Care enter your email below and get your FREE “INSTANT IMPACT” report so that you can learn instantly what you need to do in order to take control of the situation. Furthermore, you’ll also get 4 more FREE reports such as
• “6 questions you need to ask the most senior doctor in Intensive Care”
• “The 7 most FAQ’s whilst your loved one is critically ill in Intensive Care”
• “10 things you didn’t know doctors and nurses are talking about while your loved one is critically ill in Intensive Care”
• “9 Myths of being a critically ill Patient in Intensive Care”
Sincerely, Your Friend
This is Patrik Hutzel from Intensivecarehotline.com and I’ll see you next week with another update
For more information and to claim your FREE “INSTANT IMPACT” Report visit INTENSIVECAREHOTLINE.COM