After two weeks living on the yellow unit, we completely broke down in front of the administration and said we had enough. We have been somewhat sugarcoating the reality of being here but the truth is that we have been really unhappy and more than a bit disconcerted with several things, but mostly the nursing care on the yellow unit. We still remain very positive about the therapies that Chloe has received and are confident in the team that has been put together for her but when their day is done or the weekends arrive, we have a very different feel for this place.
Our PT had been aware of some of our problems and had brought it to administration. After a 4 page complaint, a meeting with the Patient Care Director and Social Worker, and a pending meeting with the higher administration, we have been moved to a different unit - the green unit which is the unit we had seen on our tour and were initially impressed by. We are now in a room with three other small babies with a nurse who is in the room most of the time. The nurses station is right outside the room and they are easily accessible. There is also continuation of care here so that when a nurse is working a few days in a row, then we will have him/her return to our room.
This has been a good change so far. As soon as we began moving our things, we were immediately greeted by Chloe's nurse, and other unit nurses even came in just to say hello. We were told there are no fruitflies here on this unit, there is a fairly empty refrigerator where we can store food, there is even a LOCKED shower room (oh, if you only knew what we had beforehand). The day and night nurse we had in the first 24 hours of our move seemed to be well beyond competent and we felt more than comfortable leaving Chloe for a dinner out with my family. Yes, this is the first time we have felt that Chloe was safe to leave for a few hours and have some time to enjoy ourselves. As we sat with Olivia and my family over a nice dinner, we didn't worry, we didn't panic, we didn't rush. It was refreshing and way overdue!
We hope we have not spoken too soon about the positive change. One of us will still remain by Chloe's bedside and be with her during therapy but we hope that we can take breaks when there is a need.
Chloe continues to do well. She and Olivia had a nice playdate Friday afternoon to start off our weekend together. My parents were able to pick up Olivia early from school and bring her to the hospital so that I could have some time with her. Olivia was so excited to see Chloe awake and alert. We opened up some playmats on the floor and Olivia read books to her sister, played with her toys, and showered her sister with kisses and hugs. Chloe enjoyed her sister's gentle touches and cooed lots while they played. It was wonderful!
Much love and thanks,
Michelle, Reth, Olivia and Chloe
PS
Our updated address at the hospital:
Chloe Atienza
PATIENT: Green Unit, Room 110
Blythedale Children's Hospital
95 Bradhurst Ave.
Valhalla, NY 10595
Way to go you two! That's what you need to do. You are your child's advocate and you need to take action when needed. I'm sorry you had to go through such an ordeal, but am glad to hear things are turning around (keeping my fingers crossed). We'll be in NY in a couple of weeks, hope we get a chance to see all of you. Lots of kisses and hugs to everyone, especially Chloe!!!
ReplyDeleteLove,
Annie, Ashley, & Matty
cOngrats tO bOth Of U fOr standing On yOur Own persOnal grOunds!!!! remember just because it seems difficult dOesnt make it impOssible lOve U bOth.....keep GOD 1st & everything will prOgress pOsitivly lOve derica
ReplyDeleteI am thinking about your beautiful family, and sending love and prayers your way.
ReplyDeleteAll my best,
Chani Traube
that's a great picture!
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