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3 days ago · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

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

Mon, Aug 5 8:02pm · Loss and Grief: How are you doing? in Loss & Grief

I am grateful for this community and opportunity to discuss and share about grief. It feels so lonely with most of my friends who have never been through deep loss.

Sat, Jul 27 10:09pm · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

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!

Sat, Jul 27 9:51pm · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

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.

Sat, Jul 27 9:43pm · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

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.

Thu, Jul 11 4:05pm · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

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.

Thu, Jul 11 3:54pm · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

Thank you for responding! I will read the blog post you wrote. We live in a mountain town which is four hours from the nearest hospital that offers the post ICU support. However, my son's PICU is hosting a retreat for the staff and are inviting PICU families to participate and share their stories. They invited us to come and share a video of our experience! That will be very helpful for us in processing, sharing, and also hopefully connecting with some other PICU families. (Maybe not the same families we became close with during his PICU stay but it will still be nice to connect with people who "get it."

The hard things I am dealing with are multi-layered. I talked about our son's 2 month hospital stay, but a year prior we lost a baby boy to stillbirth at 35 weeks from unknown cause. Then after a healthy delivery for our second son, one week later I experienced a massive postpartum hemorrhage and almost lost my life. I was on the verge of DIC and they had to perform an emergency hysterectomy to save my life. That was incredibly traumatic. We wanted more children, and to wake up from surgery without a womb has been devastating. So I was also in our rural hospital's version of an ICU and left without the ability to have another baby. There is no support for that ICU stay for me or the loss of my womb. I even went to a large Denver hospital seeking support for emergency hysterectomy and there is nothing offered. That has also been a lonely and difficult journey.

So we are simultaneously dealing with grief from the death of our first son, grief over the hysterectomy, and the trauma and ongoing medical issues with our toddler. Before all of this, we were a healthy and active family with no history of any medical conditions. It is all shocking and difficult! Living in a small town (the we are well supported by loving family and friends) has been challenging because there are few support groups or licensed trauma counselors, etc. Thank you for offering a space to discuss these things! My toddler is coming to Mayo Clinic next month to be evaluated there. We are grateful to now be a part of this neat community.

Tue, Jul 9 11:26pm · Loss and Grief: How are you doing? in Loss & Grief

Hello Danielle, I have been thinking about you and your family often. I mentioned that I could share some thoughts from my own grief journey, just want you to know that everyone grieves differently. So what may be helpful for me may be irrelevant for you. I have read a lot about grief and how our culture responds to grief. It has helped me have a framework for the craziness and helped me realize that a lot of the emotions I experience are normal for grief. Just knowing that the feelings were normal was strangely helpful.

Anger, feeling lost and purposeless, feeling you have nothing to offer your other children, feeling out of control, feeling guilt, despair…those can all be normal grief responses. Many who have not experienced intense grief just wanted me to be positive and happy. Those were not attainable goals for me. Happiness was certainly not something I could begin to imagine in the early months of grief. I had to focus on getting through each minute.

I am learning to change my expectations from people, even dear friends. All my relationships changed after the death of my child. Not all were lost, but all were changed. Grief affected every part of my life. At first I expected people to know how to support me, but often I was disappointed and felt more lonely than ever when support sounded more like people correcting me on being sad. That is not what I needed. Grief is actually a healthy response to loss, and many did not understand that.

It helped me to express my grief and let my anger out in ways that did not hurt myself or others. I wondered for awhile why I felt such intense anger, and I think for me it was the feeling of being completely out of control. The most precious thing was taken from me, and I could do nothing about it.

I tried a few different grief counselors/therapists, but I have yet to find the "right" one. The ones I heard from told me to do yoga and focus on the positive…that didn't cut it for me. I have heard from others that you have to find the right one. What did help was being part of a group of women who shared similar loss. Those shared experiences helped me realize I am not the only one struggling with the loss of a child. I still hope to find a therapist who will be helpful in my situation. I hope that you can find someone to connect with as well.

I didn't like the idea of "moving on." Another grieving mom talked about "moving forward with the loss." That resonated with me, as I didn't feel I was leaving my child's memory behind, but moving forward with him in my heart. I remember you said Danica taught you so much about life and love, and she is part of who you are. Her story continues through you.

It has been two and a half years since my son died. Moving forward has not come in clear ways or even by me seeking it. It has come in thousands of tiny steps, interactions, thoughts, grief work, talking, journaling, expressing all the hard stuff, and recognizing perspective on grief. Nature has helped clear my mind in the chaos.

I will give one bit of advice. Try to be kind to yourself. Grief is exhausting and hard to carry. Try to give a lot of grace and forgiveness to yourself. You don't have to be something now. Just take care of yourself. In time other things will fall into place.

I am wishing you so much love and strength!