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Post-Intensive Care Syndrome (PICS) - Let's talk
Intensive Care (ICU) | Last Active: May 22 3:02pm | Replies (598)Comment receiving replies
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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Hi @kristap31 . Your little guy, Owen, seems like he has been through a lot in his short life so far. I also can sense the grief and sadness in your posts. Undoubtedly, you have endured quite a bit of loss with your son, your future children that you never got to bear, and the fear of another critical illness for Owen. My goodness... you're carrying a lot of weight on your shoulders everyday.
I'd love to hear any insight as to what has been helpful for you. Have you found any success in coping through these feelings and emotions? Does talking through it help? The journaling help? Have you found other practices that have been helpful, perhaps church groups/support or other grief groups? How about reaching out to your own primary care provider?
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You don't sound selfish at all. I have 3 children and now 6 grandchildren, so I know they come first. I was 62 when I got ill. But your life does change completely. I had to step away from previous friendships bc they thought I could step back into my previous life, not understanding barely walk. I had been a long time Girl Scout volunteer. Some of the people even ( I'll never know who) even tried to get me removed from my volunteer position. That was painful. I can only guess bc I wasn't at their beck and call like I had been before. A Board member stepped forward and vouched for me and the CEO actually apoligized to me. I changed the area where I volunteer. I'll be helping my daughter with my granddaughter's troop, and I still help with fund raising. But it does feel good to give back in the fund raising department. I just have to pace myself.