Advocating for Zoe

About a week ago I had a very unsettling and upsetting experience at the hospital. The day started out just fine, it was Tuesday so it was our day for our teacher to come to visit Zoe at the hospital. Lily was requiring a lot of extra attention due to an upset stomach so I brought Avery with me. When we got to her bedside Zoe was sitting in her stroller with about 4 nurses surrounding her and she was just smiling and smiling. She is such a social little girl.

Our session started and wasn't going great. I think Zoe was a little overstimulated by all the attention she was getting so she started to get a little fussy. I was holding her and the teacher, audiologist and nurse were all with me. Just then the nurse manager came into the room and asked the teacher to step out. About five minutes later she came back and said to me "We have a problem, you can't have people from outside agencies coming into the hospital to work with Zoe. Your teacher needs to leave now. This is for Zoe's safety." I was absolutely dumbfounded and I became rather hysterical and she began to tell me that we could not have this educator come in to work with me and Zoe. She said that the hospital could provide these services and i said no, they can't because we are pursuing an auditory-oral education for Zoe and the hospital does not provide this at all. I got so mad and so angry that yet again someone else was telling me what I could and could not do for my child. My entire body shook at least an hour afterwards. I just could not see how this would cause any harm whatsoever to Zoe and it later came out that someone had complained and said that Zoe de-sated into the 40s during the session - this was not in fact true as I was there the entire time as were a couple of nurses and Zoe NEVER de-sated like that.

Later that day the nurse manager came back once Richard arrived and we had both calmed down. She said she would arrange a meeting so this could be discussed. Her intention was to prove to us the hospital could provide all necessary services for Zoe. What became evident in this second discussion is that the hospital is completely ignorant about Georgia PINES and The Atlanta Speech School and just look at them as outside specialists that you use once you go home. Well, Zoe and we, her family, benefit tremendously from these support and education services. I spoke at length with Zoe's doc who was solidly on our side which was very nice.

We arrived at the hospital on Tuesday morning bright and early and met with the neonatologist, nurse manager, audiologist, OTPT, audiology dept head, patient relations, and her primary nurses. It started with the nurse mgr asking OTPT and audiology to tell us what they provide for Zoe - which we of course already knew. Dr. Manar then said "Ok, so what can we do to get the outside agencies into the hospital so they can work with mom and dad?" I loved that she just said okay, enough dancing around, let's cut to the chase and get on with it. It ended with them agreeing that these people could come in provided that they got non-medical credentialing, one of us is always at the bedside with them, and a nurse is always with us to make sure Zoe doesn't overdo it. One thing that was really great to hear during the meeting was when one of her nurses spoke about how well Richard and I know Zoe and how well we handle her episodes and know just what to do so she doesn't get into trouble. I had often felt like the nurses didn't think I knew what to do for Zoe, but that really helped my confidence.

The interesting part came after the meeting when I was back in Zoe's room and two different people who attended the meeting came by to make sure that I knew that the complaint had not come from them. Interesting....so it obviously came from someone who didn't even work with Zoe! The main thing I'm pleased with is that we were able to make this right for Zoe so she doesn't have to wait to take advantage of this education. I am so excited to really get started in earnest. I have also felt so blessed to have the speech school and GA Pines as the people who work with these organizations have such an incredible level of commitment to us and our daughter that they will jump through the hospital's policy hoops in order to make this happen for Zoe. They are always so supportive and available. I feel so secure in knowing that we have such incredible support to help our daughter have the best future possible!

1 comment:

nancy said...

Keira and Richard,
Congratulations on being such excellent advocates for Zoe and such amazing parents. (Dr. Manar sounds terrific!) You had obviously researched the issue well--and you know your daughter and her needs. Zoe, Avery and Lily are so lucky to have you as their parents.

All time favorite video of Zoe!

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Bible verses that comfort me

"Yes, we are fully confident, and we would rather be away from these earthly bodies, for then we will be at home with the Lord."
~ 2 Corinthians 5:8

"Let the children come to me. Don't stop them! For the Kingdom of God belongs to those who are like these children....Then he took the children in his arms and placed his hands on their heads and blessed them"
~ Mark10:14 & 10:16

"...those who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint"~ Isaiah40:31