Drayke weighs 6 lb and 13 ozs today. He looks great. We ended up talking to Dr Karmo and we told him we wanted the Aresol treatments and the CPT treatments to resume. We also explained to him that his viagra dosage should have been increased when Dr Ham was on duty but he never did. We expressed that we felt that Dr Ham did not want to do anything to improve Draykes condition. He nodded but did not comment. We also spoke to him in regards to the morphine. I so love Karmo because he explained that Drayke had fentanol (sp?) which is 100 times more powerful than morphine and when we looked in the NICU drug book we got more description on it. We decided that if he really needed it then we will okay it.
The reason why we got so upset was that Dr Ham did not talk to us and if he would have called and explained to us why he was giving morphine like Dr Karmo did things would have been different. Dr Karmo spoke to Dr Hassel who was on the floor on the high side (side that Drayke is in) and she re-ordered the CPT and Aresol treatment and she also upped his viagra.
We found out that the March of Dimes will not assist us because they give money to research and not to parents. We ended up talking to COTA (http://www.cota.org/site/c.dqLQI3OEKpF/b.496377/) They will donate $2500 for every $25,000 we raise. The problem is raising money. We have to have 4 non family volunteer to head up this to be able to be a part of COTA. This will help fund any medical, food, hotel, travel, and loss of wages accrued while dealing with the transplant. So we have some work to do.
While we were towards the end of our visit we had to rush out the door due to L getting into a car accident but while we were rushing out we got a call from St Louis Childrens. They said they needed more information in regards to Drayke. So we had Dr Hassell give her a call. This will take 2 or more days before they get back to us to tell us if they have considered us to be considered for the transplant. Once we are considered they have to assess Drayke personally to see if he can qualify. Ugh more waiting.
2 comments:
Hi, I'm friends with littlebuhnee and heard your story from her.
You might want to check out Preemies Today. Some members might have ideas about finding funding. You will, at the very least, find parents who have been in similar situations.
You are all in my thoughts.
Hey Girl,
I don't know if you had thought of it yet, but have you contacted the Shriner's? They do great work helping children with critical health problems. You may also want to speak to someone at McDonald's since they also do much to help family's. They frequently have a house near children's hospitals for families to stay in while the child goes through whatever care they need.
I will do a bit of research and see what else I can do for you!
Hugs & Lots of Healing Prayers coming your way!
Rose
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