Thank you. I have never heard the analogy of the railroad tracks, that is so true. Thank you for sharing that.
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Sarah, I am deeply sorry the loss of your son. I have buried a baby boy, it was almost three years ago that he died unexpectedly. I too used to have a cheerful, upbeat personality and things have changed so much. My friends who haven't experienced deep loss just don't get it, and it annoys me when they try to look on the bright side of my son's death. I don't think we ever need to find something positive about death do we? I am learning that grief and joy can live together. After my son's death, my six month old went into multi-organ failure and nearly died. We spent five weeks in the PICU and go back often to the hospital. I hear the flight for life helicopters and they haunt me. Every time I go back (in my mind) to the PICU and the near loss of my second son and the death of my first. It is hard to process all these things as not many of my friends have been through such trauma and shock. I wish you strength and thank you for sharing about your precious boy. He sounds like such a smart, charming little guy.
I read your post last night after returning from a trip to Children's Hospital. Your story has been on my mind and I appreciate you sharing it, as hard as it is to hear. It is hard to know that people suffer so much and face constant, unavoidable reminders of things that can't change. At the same time, it gives me strength to know I am not the only one who faces such pain. I have shared my story briefly before, so won't repeat it. But some of the things you mentioned shed light on some of my struggles as well. I was not actually in the ICU because our rural town doesn't have one. I was in the "closest section to the ER charge station" which counts as ICU. I went from being healthy to nearly losing my life in a matter of seconds when I experienced a postpartum hemorrhage. To save my life, they put me to sleep, tried to stop the bleeding, but could not. I woke up and was horrified to find my womb and other female organs had been removed. As in, I would never again have the possibility of having a baby. The shock was incredible. I still can't believe that happened. Upon going home a week later, the staff offered no mental health support other than a website which told me I was no longer a "real" woman because of my loss. They were so glad they "saved my life" and I was devastated that I would never be the same. It has affected my sense of identity and purpose, and now I know that other women who have experienced such loss suffer with suicidal thoughts and depression as well. The scar I carry is huge, and a constant reminder of how I was "gutted." That's how it felt. Something I have struggled with following the shock and loss is how people respond. They don't allow me to grieve the loss of my future as I had hoped for it. They don't allow me to grieve the loss of every time seeing a pregnant lady knowing that has been taken from me. They don't allow the sorrow and disappointment to exist. It makes me feel even more alone in my experience. I wish we as people were "allowed" to grieve loss and voice our disappointment with how things turn out.
This is only part of my story, I have also lost a baby to stillbirth from no known cause and my six month old son spent five weeks in the PICU last summer. He was on dialysis, had a colostomy, multiple surgeries, and is currently dealing with severe peroneal nerve damage and left ankle contracture. He will have another surgery next month and his scars and injuries are also a constant reminder to me of everything he went through and his trauma. I struggle too with guilt from seeing his medical challenges and feeling I should have/could have prevented them somehow.
I hope that you can find strength to be kind to yourself in everything you are facing. You said you struggle with a lot of guilt from attempting suicide. I have struggled with suicidal thoughts too and have wondered why I do. For me it is an expression of how deeply my grief and frustration and loss have changed me. It is a crazy feeling to be out of control, and yet we all are. No one is really in control, and that is a hard reality to face. I hope you can find grace, kindness and much patience with yourself. I will be thinking about you and wishing you strength for what you need. And, keep writing! Your words can give strength to other people struggling with PTSD too. You are not alone
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!
The PICU invited our family to a PICU retreat where we can share our perspective and be with some of the providers who were caring for our baby. I think that will be a good step in helping to process some things. Thank you for your efforts in trying to establish an aftercare program at the hospital you used to work at. The support DURING our stay was incredible, and we continued to have some contact with individuals. However, I think a formal support and at least opportunity to talk to a social worker about grief, trauma, death of other kids…would be invaluable. Hopefully awareness is being raised and change can happen. I had no idea that others dealt with these issues until I found this Mayo Clinic group! I thought I was crazy and the only one struggling! The weird thing is no one even asks how that PICU stay and my baby's near death affected me. I guess people just don't think about it.
My son was in a PICU for five weeks last summer. Though most of my attention was on him, I often thought of how hard it would be to be a PICU nurse. I really admired them and they were my support and strength through some of the most terrifying moments. Thank you for all you do! The PICU we were in invited us to a PICU retreat to share and encourage the staff. I think it is great that more awareness is developing as to the emotional impact of ICU stays on families, patients and staff.
I just read your blog post and thought those words were excellent! I was wondering if there is any written booklet or handbook for PICU families that could be given during long stays? EVERY point/piece of advice that you mentioned my husband and I learned just by going through it. My son's hospital did have excellent social workers and nurses who verbalized many of the points you wrote about, but it would be even more helpful to in addition have a hard copy to remind PICU families to care for themselves and recognize the stresses of being so involved in your loved one's care. It would also be helpful to know what to expect as far as the emotional and physical strain on family members. We were in the PICU five weeks, so it was a long time to be in that environment.