Dreams

[GrantKristinS]

Hi all,
Kristin, Lucas and I are waiting for Luke to get a heart transplant. He's been on the transplant list for about 25 days now and we keep getting comments from the nurses how he doesn't even look like he needs a transplant, he's that healthy-looking. In spite of all of the doctors/nurses telling us that things look good I've started having some very vivid dreams wherein Lucas dies/lies dying and they're extremely disturbing. Does anyone have any advice as to how they've coped with similar nightmares/fears/anxieties? How do I set my fears aside and look at all of this with a glass-half-full mentality?
Any advice would be great!
Sincerely,
--Grant Stoddard

[Chrissie]

I hope and pray little Luke gets his heart soon. My name is Chrissie, my daughter Kylie has HLHS she just hit her 1 year mark and is post Glenn. Welcome to the group! This is such a wonderful group to belong to.
About your dreams, that is not a very fun one. I to have had a dream about Kylie, it was the most horrible thing ever, she went in for her Fontan and died in OR it was so so so unexplainable and miserable how I felt. I found talking about it helps out a ton. I know it’s like reliving the whole thing and I don’t like to remember it, but to just get is out and not hold those feelings in helps me a ton. I don't think it’s a premonition or anything, but I am so not looking forward to waiting in the waiting room for that surgery. I think maybe it’s our subconscious minds preparing us for what might happen? the reality of it all?
I hate that any one has dreams like this, it really isn’t fun at all! I'm sure your are totally normal and fine to have these dreams. I think also all of the stress of being in the hospital and seeing your sweet guy like that hurts more mentally some times. I would recommend talking about it. My husband doesn’t like to talk about the “negative” in this heart world we belong to, so I just told him about the dream and let it go. I found others that listen. It is something no one else can understand until they are there in your shoes. Sorry I hope this helped. I just thought if you knew you’re not the only one who had these horrible dreams you would feel better. Praying for our new heart friend Luke!

[Alli and Kyle Hicken]

Hi Grant,

I have to say, I LOVE your name! Our little heart baby is named Grant too! I second Chrissie, you are not alone in the trauma dreams. My son coded in my arms and I had to start resuscitating him along with a nurse before he was put on life support once and we have had to watch him flat line a few other times in the hospital. It is a sickening feeling whether you are seeing it firsthand or dreaming and having to see the "what if's" run through your mind. I am not an expert in trauma, but I am a clinical therapist and my training has really helped me to be able to process these events in my own life. A few suggestions for you:

1. Continue to express these dreams and other scary thoughts you have. If something feels especially disturbing, bring it up with Luke's doctors. They have seen how our special kids get through things that no one would thing possible. An ICU doctor or nurse practitioner will likely be able to dispel your thoughts and give you a clear picture of accuracy. For example, after one of our son's cardiac arrests, I had a very sobering, but truthful talk with one of the PICU nurse practitioners that I trusted and felt like cared about us. He was able to accurately describe the process of turning off the ventilator and letting a child die peacefully with their parents and family nearby. He explained the medicines used to keep the baby comfortable and helped me to see that it was a very loving, caring, and peaceful process. Thankfully, we never had to pursue that route, but knowing the reality helped me to change the trauma thoughts that I kept reliving because it provided an outcome that was different than the chaotic process I had envisioned.

2. Get it out. If the dreams are disturbing your ability to go back to sleep, you end up being exhausted and stressed on top of it all. Make yourself wake up, get out of bed, write the dream down in a notebook in small detail. Then, do something to soothe yourself (wrap up in a warm blanket, drink a warm drink, look at family photos, etc.) before returning to bed. If you are plagued by the thoughts of the dreams, use the power of your mind to change the outcome. Picture the dream again, but this time, place yourself and others in a place of power: i.e. see yourself as the hero who walks in, picks Luke up off the bed and comforts him. Picture the people in the dream who were previously unable to help doing something different that changes the outcome of the dream for the better. One of the reasons our minds play on these events is because inside, we feel deeply helpless and vulnerable in situations outside of our control. Allowing yourself to create a different outcome to the story over time will help you calm yourself and your dreams can begin to change.

3. Find an outlet. Stress can do crazy things to us. Physical exercise is especially helpful because it allows your body to produce natural endorphins which stimulate our brains to produce mood stabilizing chemicals. It will also help your physical body to get out extra energy and help you sleep better at night.

4. Change your sleep. I have no idea your history with sleep (i.e. past insomnia, bedtime routines, whether you are sleeping at home or away with Luke right now, etc.) but it might need some tweaking due to a change in your life. A solid bedtime routine will help your body move into a more restful and deeper sleep. Even if your time is limited, you can establish a good routine. Turn the lights in your house down 30 minutes prior to bedtime. Don't watch the news or read stimulating material just before bed...the lights and storylines can actually keep you from sleeping well. find a set pattern of things to do and do them consistently to help you sleep better. If you are remembering your dreams, you are likely sleeping lightly (we tend to remember our dreams when our deeper sleep is interrupted) or waking frequently. Do what you can to minimize sleep distractions (set the temperature, be comfy, turn on a white noise machine, etc.). You might consider a sleep aid for a few nights as well... anything to help you get deeper sleep will help you cope better.


Hopefully a few of these ideas will help (and sorry for the novel!. I could probably go on and on about self care and stress management, but the more you can do to nurture yourself and your relationships right now, the better. Waiting for a transplant...how stressful for you all. Reach out to friends, family, and other support (Like this board!). I love talking to other heart families because they really do just get it. If the dreams continue, consider talking with our doctor about a short term anti anxiety medication (but be sure it does not have sleep side effects!) and seek out a qualified therapist of hospital social worker (plus they are free!) to talk to about this. It is normal, ok, and it will get easier. It has taken me a few months to feel relaxed again after the constant trauma of hospital living, but hopefully some of these techniques can help for now. Good luck!

Alli Hicken
mom to Grant (HLHS, heterotaxy, etc.)

[GrantKristinS]

Thank you so much for responding. The dreams have gone. I think that they largely were the result of sleeping alone.

Good luck to all of you.
--Grant