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December 18, 2005



Moreena, I am in need of articles for the Organ Transplant Support, Inc. newsletter. Our one writer has been in hospital. Would you like to be published in the Miracle Messenger? I'd be more than happy to look at the article for our publication. If you're interested...


Moreena you are so organized. I am so glad that you have been gifted an iPod. I think you and Anni will be very happy making music together. I hope you can make things even easier for yourself (and for other families with sick children) at the hospital.


Hi Moreena, I have given this much thought. I have a song that is very well known by and artisit that isn't well known, but I am sure you have heard this version somewhere. "Somewhere Over The Rainbow" by Israel Kamakawiwo'ole. I posted the link below so that you can hear a sample. It is a very soothing song, the way he sings it, and is mixed with the song "What a Wonderful World" I'm sure Annika will love it, as well as you and her nurses. I used to sing this to Anna in the hospital, and still do as a matter of fact. Probably not as much as I should, it reminds me of her being sick in the hospital so it makes me cry when I hear it. Take a listen. You would be able to purches this song from I tunes I'm sure. You might not want all the other songs on the cd. If I had a cd burner on my pc I would burn a copy, but I don't. look for the link to the sample of the song under featured clips. Hope you like it!http://www.artistdirect.com/nad/music/artist/card/0,,515064,00.html

Sheryl, Justice's mom

Moreena, as a nurse and parent, I had a similar list that landed in the hands of patient relations at Stanford before I left (as well as our insurance case manager's desk). My issues went beyond just nurse/pt communication and relations to questions of negligence and substandard nursing practice but I wanted to encourage your efforts because the only way to affect real change is if people, specifically patients, use their voices. Having been a patient (with Justice) at three hospitals, and working at yet another with a children's hospital attached, I had definate opinions on appropriate models of family centered care. Of course, sleep deprived neurosis guided some of my complaints (nobody's perfect!) but the general outcomes were nothing less than spectacular. Good luck with it all. Including your play list. Hoping Anni is feeling spunkier than ever soon.


I have to agree with Sarah on that recommendation. That song is beautiful. It was featured in "50 First Dates" with Drew Barrymore & Adam Sandler. So, If you have difficulty finding it elsewhare, it is probably on that soundtrack.What a great way to organize your thoughts and needs. Good for you. If you get that finished, I'd love a copy...honored in fact. But please take your time. This is something you do for yourself.

Lisa (Aidens Mom)

I just posted this song on Aiden's page, (not actually playing but wrote about it being our favorite) It is called "I'm not perfect" by Laurie Berkner. (You can catch her on Noggin channel on Jack's Big Music Show) Anyway I love this song, and it is got a cute folk sound to it, as well as message. "Im not perfect and I you know I like it that way"I will be thinking more.. but also LOVE Sarah's choices. They make me nostalgic just because.\Ps/ praying so hard for you sweet little Anni!


Just wishing more healing, a bit of Christmas no matter where you are, and some peace, again. Thought of you and your family in the middle of the night, and awoke to pray a bit...you are not alone.


A CD or song that I've always loved since I have a sense of the dramatic is the City of Angels Soundtrack. There is that great song from the Goo Goo Dolls "Iris" and "Uninvited" by Alanis Morrisette. And they add a touch of Hendrix and some Peter Gabriel in for good measure. I am all about music soundtracks and also LOVE "Hope Floats". My 2-year-old and 8-year-old both enjoy the Shrek Soundtrack too!I truly hope your Christmas is peaceful and you can celebrate in February. A Christmas tree filled with Valentine hearts sounds perfect!

Bettie Bookish

Moreena~I have recently started contract writing for an executive training firm that specializes in healthcare facilities and focuses on patient advocacy. I would LOVE to see your manifesto. Please email! Bettiebookish@yahoo.And again, we are all sending our prayers, good thoughts and wishes for peace in the midst of turmoil. You're all in our thoughts all the time.~Elizabeth

Becca - momofnataliebear

Oh, my hospital thoughts....as Natalie would say, "hmmm....let's see...":I hope that this doesn't come off at ranting and raving, but hey, you asked. Here are things at the hospital that drive me nuts. I know residents have to learn somehow...but I really hate the July/August transition period when new residents come on the floor. This is what I have shared with some of the newbies on 6 west.1. Sleep is important. If I have a sign on the door saying "[patient name] is sleeping" please don't wake up the patient. Just because you wear a white coat doesn't mean I need to see you at 7am when my child stayed up with a reaction to a blood transfusion until 5am.2. Communication is important. Some parents trust blindly. Some parents want to be informed. Ask us, we the parents, will tell you what type we are, then please coordinate your communication styles. We want and deserve to know everything. Let us filter the important stuff. And do not assume that we have been told anything by any other doctor. That usually leaves us being told nothing.3. Just because we are young parents and don't wear white or gray coats does not mean we are stupid. This is our daughter we have been living this hell for 2 years. We don't get to leave it at the hospital door when we leave. This is our life we are living it. Your decisions affect a life.4. We trust our doctors and their decisions, however we will and should be allowed to question every decision you are thinking about making. Even if it's something simple like oral medication doses, please communicate.

Becca - momofnataliebear

Ah, nuts I just realized you were looking for PICU nurse/parent relationship stuff...rats. OK, my thoughts on that:-I loved it when they sang to Natalie and treated her like she was a real person, not just like a job.-I loved the nurses that took the time to bathe and do her hair-I loved the nurses that told me to take a break-I loved the nurses that filled me in on any doctor speak that I missed out on-I loved the nurses that let us pull up labs on the computer to track them ourselves.-I loved the nurses that put movies in the DVD player for Natalie even when she was paralized (also for the open wound) even if we didn't know if she was aware that they were on-I didn't like the nurses that treated Natalie like a "task" instead of a "kid"

Lisa (Aidensmom)

Ok I have one thing for your manifesto..nurses of the PICU:Please stop laughing so loud in the hallway! Don't sit outside my child's room laughing cause the flight transport team just came in, and you are all giddy from coffee overdoses and whatever that drives you to keep moving that late at night. Please know that the thin glass door that shields me from you in our PICU room is NOT SOUND PROOF! When you are laughing so hard that it hurts.. Stop... look in through that glass door... and see my face. I am not laughing. This is my reality. This is my child. Sick, scared, hurting. NOTHING IS FUNNY to me, and a little respect is all I ask. Ok Moreena, can you taste the bitterness of that request?? Cause it is there. Lived it and don't want to live it again.


Hmm.I think the biggest thing I would want to communicate to NICU/PICU personnel is that I am this child's expert. No, I did not go to school for this, but I have received on the job training in this particular child's needs 24/7 for x number of years. So, *unless there is a dire emergency where speed is of the essence*, talk to me first. If I don't understand something, explain it to me until I do. Because, until I do, we aren't going to proceed.I know that sounds harsh, but it saves so much time and hassle for everyone (including the hospital staff) if we do it this way.Oh, and the other thing. Don't say things like my child is being "bad" or "difficult" if s/he's having problems. I know you're trying to be cute, but it's really very mean-spirited.I loved the staff that let me do all of the cares I was capable of, and the ones who treated my children the most like kids and the least like problems to be solved. Every scrap of normalcy is a blessing.Hope that helps! You all are in our thoughts.

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Falling Down, November 2004

  • Balloon in hand, my 4-year-old
    twirled across the kitchen floor,
    singing nonsense words
    in her own key.
    "It's my gift!" she declared
    to the world at large, which
    was really only me,
    sitting at the table. Enough
    twirling, and she lost
    her balance, tumbling
    to the floor in a theatrical
    slapstick of elbows and knees.

    She lay on her back
    for a few seconds,
    at the textured ceiling
    with the mysterious
    spaghetti sauce stain.
    Suddenly she
    flapping her arms and legs
    there on the floor, as if to swish
    the imaginary snow
    into a snow angel.

    "Falling down is also a gift!" says she.

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