@alishanjosh I am so glad to hear things went well. Thinking of you all during the recovery time!
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Hi @alishanjosh – this is a fantastic question to ask your health care team. Practices vary across the nation and from hospital to hospital. There is a movement more and more now towards family engagement in the ICU, so being able to sleep in patient rooms is becoming more acceptable. There are many things to consider with this such as environmental safety, safe access to the patient, and ensuring quality rest for families. I would encourage you to reach out and ask your care team so you can have clear expectations regarding this important aspect of your daughter's care. Best of luck to all of you with her upcoming surgery.
Hello @sacker . I apologize for the delay in my response and also want to thank you for joining this conversation and sharing your insights. I was away at a conference by the Society of Critical Care Medicine. I do a lot of work with many great people at that organization through the Thrive collaborative where we focus on helping people recover from critical illness to the very best of their capacity. I want to share some important links with you that I think you might find helpful. The first is from our Mayo Clinic Connect page and it is a quick overview of PICS – the active links within this blog will send you to the related page for more detailed information: https://connect.mayoclinic.org/page/pics/newsfeed/breaking-it-down-post-intensive-care-syndrome-wrap-up/
The other site I want to share is the Thrive site by SCCM. Explore this page as well, I am sure you will find helpful information: https://www.sccm.org/MyICUCare/THRIVE/Post-intensive-Care-Syndrome
There is a lot of information out there, but one of the most important things for you to know at this time is that you are not alone in feeling this way. While I was at the conference, I heard a very powerful statement given by one of the leading experts in this area Dr. Iwashyna. To paraphrase, he said: "Just because you are not who you were, doesn't mean you cannot become a new version working off of the many strengths that you have".
Over and over again we heard from experts and patients alike who shared and acknowledged that previous "normals" no longer exist after critical illness. At least in the short term. And this can be devastating to many people, especially if you have not been forewarned. I am hopeful that you will find this forum and the information that I shared with you helpful and healing. Please continue to reach out to everyone in this group – there is so much power behind these connections.
One of the many blessings of being a part of this online group is that, as a critical care practitioner, I learn from each and every one of you with every message I read. It has directly impacted the way I care for people at their bedside – and I am so grateful to each of you for that. @laura1964 , you mention that you had wished that that hospital had given you more information "and after support" following critical illness. Are there specific suggestions that you may have thought of for the after support? Many organizations are exploring starting Post ICU clinics, services, etc., but knowing the exact needs and expectations that the returning patients and families might have has been an ongoing challenge. Your insight is very valuable!
@polly08 I am so glad that you have found this group and have connected with @muriel66 and @rosemarya. They have offered amazing guidance and support to you. It is important for you to know that what both you and your husband are experiencing is so very normal after critical illness and that you are not alone in recovery. I am also so happy to hear that you are meeting the Vanderbilt team in the Recovery Clinic. I have the great pleasure of working with this passionate and talented group of people on various projects and know that you will be seen, heard and very well cared for!
@amandacgrow I am so happy that you were able to connect in such an amazing way with @muriel66 . You are both not only helping one another, but are helping so many people who will see these messages. @muriel66 mentioned mindfulness and living in the moment. I wanted to share a very timely post that was made on the Health and Mindfulness Connect page by Dr. Benzo @robertopbe. I found it quite inspiring: