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  #1  
September 5th, 2009, 12:19 PM
docsmomma's Avatar Platinum Supermommy
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DO any of you have any links to articles, research, ANYTHING on any of these issues:

co-sleeping
Feeding on Demand
the importance of siblings seeing each other ( long story but hospital has recently banned all sibs, yet they make exceptions for other families)
The emotional impact that complete isolation has on a child
The emotional impact family isolation has on children (being isolated from members of the family, both immediate and extended)

Any help would be much appreciated.

And for those following Joey's story, I posted a update
http://www.justmommies.com/forums/f5...ey-update.html
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  #2  
September 5th, 2009, 09:40 PM
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CO-SLEEPING: YES, NO, SOMETIMES?

That's the only one I have saved, but I can try to find articles on the other subjects you listed.
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  #3  
September 6th, 2009, 11:48 AM
docsmomma's Avatar Platinum Supermommy
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Thanks. We're having issues with the hospital trying to make me put Joey on a strict feeding schedule, making him sleep in the crib, and telling me to walk away and let him cry himself to sleep. Not to mention they have him in total isolation (I have to wear a gown to touch him) and are not having people come in to socialize with him. Plus they've banned everyone but parents from visiting at all, with the exception of 2 authorized surrogates (long term patients only) that have to e approved by the Charge Nurse first.
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  #4  
September 6th, 2009, 12:29 PM
Ellemphriem's Avatar Mega Super Mommy
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Have no articles but i just wanted to say thank you for informing us in this disease (i never knew existed) and that i read about it and it says that 8/10 children minimum get over it and completely healthy again ......i was happy to read that ending note even though i cannot even begin to imagine how hard all this is to you Also i read that it is not an illness that can be passed on so why the hell do they want to isolate him? That cannot help his situation.....not being close to you .......

My best wishes for the quickest and most painless recovery
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  #5  
September 6th, 2009, 05:29 PM
docsmomma's Avatar Platinum Supermommy
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He's in isolation because the student nurse who took his nasal swab for MRSA contaminated it and it came back positive, even though a second one that I insisted on came back negative.
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  #6  
September 6th, 2009, 06:12 PM
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The hospital cannot tell you how to parent. Any social services agency could and likely would help you maintain your rights as Joeys parents to:sleep with him,feed him when you please and NOT leave him to cry. Does the hospital have a social worker? Do you have a patient advocate for Joey? Is there an alternate hospital in your area?

My heart really goes out to your entire family, I can't begin to imagine how difficult this is for you all.

How about just bringing a copy of Dr.Sears Baby book into the hospital with you? There is also a ton of info on The askdrsears website.
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  #7  
September 6th, 2009, 08:22 PM
MommaNator's Avatar Mega Super Mommy
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I am aghast that the hospital is trying to tell you how to parent your baby! Although I know this is what they do. My heart goes out to Joey and your whole family. It simply cannot be good for Joey to be isolated from his siblings for such a length of time and I would argue it up the hospital food chain, especially if they are making exceptions for others. Besides, I think healthy siblings would be at extremely low risk to contract MRSA, even if Joey did have it. Does Joey's room have a fold-out couch or fold-back chair where you sleep? Mona was in the hospital for a (thankfully) short stay, and I either held her in the rocking chair or laid her next to me in the fold-out chair and we slept that way, with tubes snaking across the floor. A nurse can stare at you disapprovingly and make snide remarks, but a nurse has no authority that I know of to make Joey sleep alone in his crib. As for the feeding, I could partially understand it IF food has an impact on his treatments. Otherwise, it is a parenting decision and they can buzz off. It means an earful for you but so what? ((HUGS))
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Last edited by MommaNator; September 6th, 2009 at 08:25 PM. Reason: missed word
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  #8  
September 6th, 2009, 08:23 PM
HurricaneLady's Avatar Platinum Supermommy
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I am so incredibly sorry that you have to deal with this added nonsense in the middle of everything else going on in your world. I think you need to schedule a meeting with the hospitals administration to discuss your concerns and help stand us for your parental rights against these crazy nurses.
I second the Dr Sears book, and I would totally just tell the nurses off if all else fails....for 1 they are NOT a DR and 2 they are NOT his parent.....their job is to follow the DR's orders and update his chart with his stats thats it.....not offer parenting advice.
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  #9  
September 7th, 2009, 12:14 AM
docsmomma's Avatar Platinum Supermommy
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The hospital instated a "no sibs, no visitors other than parents" policy in July, claiming "swine flu precautions" Coincidentally this is right after they demolished the old parking structure. The food has no impact on his treatment, he's just not hungry because he feels lousy, and I encourage him to eat ALL the time right now just to keep him off a feeding tube (whch we have successfully avoided so far), they just think it would be easier to chart meals and snacks at specific times. I'vve got a cot and I am still co-sleeping with Joey even though they fight me on it. The MRSA precautions are over the top. 3 negatives taken a month apart before he can be allowed off isolation, if he's nagative, he's negative. Only me and DH are allowed in, with my mom and his mom allowed in if neither me or him are here. No one else. There are no other children's hospitals in our county and they know it, and no histio doctors close by that are not here.
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  #10  
September 7th, 2009, 08:42 AM
MommaNator's Avatar Mega Super Mommy
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I like another poster's suggestion to schedule a meeting with the powers that be. I would tell them how Joey ate when his siblings were present but he won't eat otherwise; that's a strong argument for their visitation. Also if exceptions are made for other families, they can make one for you and I would argue that too! I would argue too that the "positive" MRSA result be completely disregarded as if it never happened because it was contaminated. Are they trying to protect Joey's sibs from MRSA by saying they can't visit? Because they probably come in contact with it all the time at the grocery store or other places and certainly would have if Joey was at home so if it's for their protection then it is really dumb.

ETA: On top of everything else you are dealing with, it is so draining to constantly be pushing back against the people who are supposed to be helping you and dealing with restrictive rules. You're doing a good job staying strong (((HUGS)))
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  #11  
September 7th, 2009, 01:17 PM
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It continues to amaze me how the hospital seems to insist on making a difficult situation even harder. Scheduled feedings for an infant who is undergoing difficult treatment? Do they forbid all the snacks for the adults being treated too? Why do people always insist on forcing small children to do things they would never do to another adult just because they cant defend themselves?

Joey is lucky to have you as his mom, keep fighting for him. When you need to vent you know where to come.
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  #12  
September 7th, 2009, 06:09 PM
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At this point i am grateful for the isolation, Joey has no ability any more to fight off infection. Its just the point of being able to make that decision for my child myself. I never stopped co-sleeping with him despite their arguements. And I continued feeding him when and what he wanted. They've started backing off since I started giving them lots of facts they apparently didn't know. Unfortunately its hospital policy not to allow anyone but parents up to visit now, they are claiming "swine flu precautions" but we suspect it has more to do with the construction underway here and the parking structure they demolished.

I've also made them start sending in music and art therapy daily, as well as PT and OT 3x a week and the feeding team is going to re-assess Joey this week as well (he's not taking any fluids orally). Apparently OT thinks its time for Joey to start learnign to dress himself but we will see how HE takes to that idea...

Thanks ladies. I was feeling like they were critisizing every aspect of parenting (they even tried to tell me I couldn't wear him in my Maya Wrap because they were worried he would fall out...). And I just needed someone else to re-affirm to me that I was doing the right think by fighting them on it.
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  #13  
September 7th, 2009, 06:24 PM
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Do you guys get to go home anytime soon?

I'm really hoping that you get nothing but good news and good health from this stay.
I'm really sorry you are stuck with this hospital.
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  #14  
September 7th, 2009, 06:36 PM
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dress himself?????????

I'm so glad things are easing up a bit!!! you sound a whole lot better.Keep your spirits up, we're all gunning for you guys!


dress himself???????????
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  #15  
September 7th, 2009, 08:55 PM
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if we're lucky we might go home in 2 weeks and get 1 week home before we're back here. only 2 more chemo rounds if/when all goes well.
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  #16  
September 7th, 2009, 10:14 PM
ItalySarah's Avatar Proud Attached Mommy
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Lots of prayers for you! I have no articles off top but I will see if I can try to find some.
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  #17  
September 8th, 2009, 04:06 PM
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Just heartbreaking to read this.. I'm praying for you guys.
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  #18  
September 9th, 2009, 01:17 PM
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I am glad that by the time I got to the end of this post, I saw that you may get to go home soon! My heart goes out to you and Joey and I have lots of things I could say about the hospital and their staff, but Im sure you can guess that without me getting into it. Just know that he is YOUR son and YOU know what is best. NEVER let them tell you how to parent. You are doing an awesome job Mama and I check back here for updates all the time.

BIG BIG hugs to you and Joey and your other little ones. We are all praying for you guys and hope to see get to go home soon. If you ever need anything, dont hesitate to ask.
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