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Transferring Joey's care


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  #1  
September 30th, 2009, 02:11 PM
docsmomma's Avatar Platinum Supermommy
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Hi ladies. Joey is doing well, all things considered. Things did not get better with CHOC after all, and after last night and an incident that put his safety in jeopardy, and being informed today that staff was sick of dealing with us, we decided to transfer Joey. I figured we would still have co-sleeping issues but had decided that I would allow crib sleeping, if they would just let me rock him to sleep and hold him consistently without issues. However the hospital we are transferring to is very very supportive of AP. As long as we sign a release of liability they will allow us to parent the way WE feel is best.

I have to say that I am able to laugh now at some comments made to me, because I can laugh at how naive the people saying them have been. I figured that I would share them here because, well, the comments were made regarding AP and I responded to them also.

Nurse: "Co sleeping is an evolutionary effect of apes."
Me: "Its facinating that you believe that. I am shocked you are comparing me to an ape, but if you feel apes give their children the love and comfort they need despite the location they are in then I would have to agree, thank you."

Nurse: "What a barbaric form of parenting"
Me: "How is providing comfort to a sick, hurting, or needy child barbaric. I can see we have a difference of opinions on the important aspects of parenting but I don't consider you to be barbaric, please do not consider me to be."

Manager: "Healthy children cry, and its good for them."
Me: "however as you can see, and as you have pointed out, Joey is not healthy right now, so crying is not healthy for him. Plus this is your belief and mine is different."

But my favorite was from a wonderful Physical therapist who has to be the nicest person I've met here.

PT: "Its so nice to see people still parent the way Godf intended, with love and compassion. SO many people think just raising their kids is parenting but you, well you have seen what parenting truly is, doing whats best for your child, despite what others say."
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  #2  
September 30th, 2009, 02:22 PM
ItalySarah's Avatar Proud Attached Mommy
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Location: North Carolina
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I am so glad to hear that you guys are going to be able to be in a place that is AP friendly. How is their care? Do they specialize in Joey's condition?

I am continuing to think positive thoughts for you guys. Thank you for updating us!
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  #3  
September 30th, 2009, 03:03 PM
docsmomma's Avatar Platinum Supermommy
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I had a nice long talk with them and I have been to their facility before. The care is amazing. The patient to nurse ratio is 3:1, which CHOC has a 4 or 5:1 ratio. They have better communication, and just finding out simple answers from them has gone better already than finding out simple answers from here.

A BIG plus is CHOC does not have a good long term survivor clinic and Miller's does. With us being HOPEFULLY close to No Active Disease, we need a place with a long term clinic so he can be followed closely.

They do have experience with LCH, in fact when I asked about it they asked if they could have me talk to another family. RIGHT NOW there is another LCH kid on the same treatment Joey is on inpatient there. I got to speak with the mom and she really set my mind at ease about alot of things.

In this trip I have woke up to check on Joey and found the IV tubing wrapped around his neck. Staff only checks on him every 4 hours here, and there they assure me they check on their younger kids at a minimum of every 2 hours.

They offer support groups for families dealing with diagnosis that are not cancer, and the families (according to the LCH mom there) accept all the HemOnc kids as one in the same. Different disease yes, but same battle, same fight.

I feel comfortable in this decision, and it wasn't entered into lightly. It was a decision I wish we had made months ago, and part of me wonders if we had transferred the first time I felt we should have (back in March) would Joey have gotten better care. I questioned the route they were taking with his disease back in March and thought we should go to Millers for a second opinion but DH didn't want to. I will always wonder, but I will not regret.

But for us, a huge plus in the emotional area is ALL the kids can spend time together finally. I will see my big kids again, finally. I have missed them greatly and I know Joey has. Plus they miss Joey and worry about him more when they can't see him. This is the right choice for everyone.
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  #4  
September 30th, 2009, 03:35 PM
LucilleTwo's Avatar Andrea, mama to L & E
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I have never posted in this forum but do read most of the posts. I am an RN and am embarrassed and appalled at the way you and your family have been treated. I work with adults and policy here is to check on them at least every hour so I am surprised to hear that at that hospital they only check on the little ones every 4. Anyway, I am wishing you and your family all the best and hope that things are much better at the new facility.

Hearing about nurses like that really makes me angry because I pride myself in my nursing care and the interpersonal relationships I form with my clients and their families. I have always said that we are only as good as our worst staff member because most of us have to constantly prove that we are not like that one bad apple. No wonder people have a bad view of the medical system - it's people like those you have come in contact with through your journey that give it a bad name and it really is a shame. Again, I wish Joey and your family all the best!
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  #5  
September 30th, 2009, 04:33 PM
docsmomma's Avatar Platinum Supermommy
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We've had some really supportive nurses, but the majority of the nurses here have not been. I have nurses I love and I know that there are excellent nurses. I also know there are some that I can't uinderstand why they choose this field.

Miller's has accepted Joey, and at the latest he will go Monday but we are trying for Friday. The new doctor is amazing, she is looking forward to Joey getting there but before bringing him there she wants to review his case, all the CT scans, etc... Which is why we are waiting. It makes sense, it really does. But I truly hate the wait. I can not wait to hold him without being yelled at and for the insults to stop.
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  #6  
September 30th, 2009, 04:47 PM
ItalySarah's Avatar Proud Attached Mommy
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I know that you did not make this decision out of the blue and I think it is great that they are taking time to learn more about him and his case. I am so happy for you guys that you are getting the transfer and I hope it goes well!
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  #7  
September 30th, 2009, 05:05 PM
mgm78's Avatar Zoe's mom Meredith
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I am glad you are transferring him and his care. I hope you have tons more success with the staff there. It is horrible to hear the crap these people said to you. ugh. I am shocked they did not say that crying was good for his lungs!!!
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  #8  
September 30th, 2009, 05:51 PM
docsmomma's Avatar Platinum Supermommy
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Quote:
Originally Posted by mgm78 View Post
I am glad you are transferring him and his care. I hope you have tons more success with the staff there. It is horrible to hear the crap these people said to you. ugh. I am shocked they did not say that crying was good for his lungs!!!
They did say that at one point and I pointed out that hard laughter can cause lung collapse so crying most definately can cause it. Their response was "I don't know about that."

Oh well, I've tried here. Lord knows I have tried. I love his doctor here... his normal doctor that is. She just heard and came in and was crying. I promised to call her and let her know how he is. As much as we love her, and she has been the only reason we've stayed this long, we have to do whats best all the way around and we feel this is.

Part of me is sad. I will miss some of our awesome nurses. I will miss Dr. Rubin. But a bigger part of me is happy and relieved.
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  #9  
September 30th, 2009, 10:24 PM
Ellemphriem's Avatar Mega Super Mommy
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How can wanting to be close to your sick baby be barbaric? ....... ***?......i am so glad everything else is going well with the transfer
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