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Post-Intensive Care Syndrome (PICS) - Let's talk
Intensive Care (ICU) | Last Active: Sep 16 7:52pm | Replies (609)Comment receiving replies
I worked for PICU physicians in an administrative capacity for years, so I know a little bit of what you're going thru. I often think my work helped me later me when I became ill. Yes, people do not realize what a toll prolonged illness takes on a family. People tend to think 'put it behind you' , but there is no way that can happen. My advice, to what has been helpful for me, is find a good therapist. I try to go every two weeks. I feel I probably will go the rest of my life. My family even got tired of hearing me talk about my ordeal. Physicians often don't understand. Medication didn't help me. It may help others. I had a couple of therapists who I didn't like at all, move on if you get a bad feeling or you don't click. I find it helpful to do charity work. But I also had to walk away from former friends who just didn't understand my ordeal. Our lives are before the ordeal and after ordeal. You have the added sorrow of mourning the passing of friends' childrens. Please try therapy. Keep a journal. I jot down things, just for my eyes. So when I go to therapy, I have points to talk about.
How is your child now?
Replies to "I worked for PICU physicians in an administrative capacity for years, so I know a little..."
Thank you so much for your kind response. I'm sorry it has taken so long to respond. I would love to find a good therapist, but live in a small rural town. We travel often to Denver for medical appointments, but at this point my son's needs are priority. If I just knew of a great therapist I would travel to go! I'm just afraid it is going to take awhile to find one. Journaling does help. I should do that more often. I think just getting my thoughts out on paper is good to see what I'm dealing with.
It's so true that life is before and after. I felt like that after my first son was stillborn. After Owen's PICU stay, it is even more so. A lot of my friends have not been through these situations so it has felt quite lonely. They just don't get it, don't ask and so I don't get the chance to talk through things. It's almost not worth the effort to keep up some friendships. Hope that doesn't sound selfish.
We participated in the Courage Classic fundraiser for Children's Hospital last weekend. That was a healing event, giving back to the hospital and being able to look back over the past year and see how far we have come. Our son (19 months) rode with us, and it was a huge mental victory to be able to do it with him. It made me feel not so alone as many other families and kids with medical challenges participated.
Owen is doing remarkably well now, considering everything his little body has been through. He went into multi-organ failure last summer and the cause is still unknown. The fear of that is with me all the time. During that PICU stay he had nine surgeries and was seen by many specialists. After discharge two months later, he came home with a colostomy, feeding tube, tons of follow up viists, and a paralyzed foot and severe peroneal nerve damage supposedly from a bloodclot and organ failure. Over the past year, we all worked incredibly hard and he no longer has a colostomy, feeding tube or any meds. The main issue now is his leg injury which is why he is going to Mayo Clinic next month. He is happy, bright, determined and a complete joy. It has been a journey.
I did want to ask you, do you ever feel fear from your ICU stay? I fight fear all the time after the traumatic things our family has endured. I have to try really hard not to be paranoid about everything my kids do. The unknown cause of Owen's illness contributes hugely to that fear. I am unsure how to deal with it!
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@janegigi your statement that "Our lives are before the ordeal and after ordeal" couldn't be more true. This is something expressed by so many people who have experienced critical illness. You are also not alone in feeling isolated during your recovery where people seem to tire of discussing your experience. Your suggestion of therapy and willingness to do this for yourself is so important.