134th Day in the NICU

So today we got woken up with a phone call from the Marshall Tribune in regards to a email that was sent to them. Just for privacy I am just going to call the person that emailed the tribune S.H. because I really do not know who this person is but if you are reading this thank you so much. The journalist got some information from Mom. I am not sure if they are going to post a story about Drayke but still any media coverage would definitely help us fundraise for our little one.

After getting off the phone with the reporter Mom got another call and this time it was from the transplant coordinator for Tenncare. Mom and (I think the lady's name was Bev) spoke for a while. Apparently Bev spoke with Pegi and Pegi does not think Drayke's PVL is going to be an issue and that they are waiting till Drayke is a little more stable and waiting for a bed to open up at St Louis before transferring him. We have not heard directly from Pegi or our doctors yet but if Pegi and Bev has spoken and started to get the insurance stuff addressed then I am going to consider this close to a done deal.

Tenncare also made mention of all the items they are going to pay for. Pretty much everything medical for Drayke. If the Ronald McDonald Apartments are full they will pay for the hotel room for 1 parent, cost of food (reimbursement), and gas (reimbursement). When I (Dad) have to travel up there I will have to pay for my travel, food and gas. Now when Drayke is released to go home and needs to go back once a month to St Louis then Tenncare will be covering the trip as well. So even though we do not need the approximately $500K for the surgery we will still need to fundraise for any medical costs that will not be covered for insurance (including medications, medical supplies, etc), housing, food, and traveling expenses while in St Louis (since most of this is reimbursed it has to come out of the pocket), and loss of wages since Mom will not be able to work and I will have to take some time off to go up there and visit him. Also I will have to take time off in order to attend the classes for his care.

We are getting set up with COTA shortly. There are 4 positions that have to be filled before it can be completed. We currently have the Trustee but we still have to fill the following positions:

• Campaign Coordinator
• Public Relation Coordinator
• Webmaster

If you are interested in assisting let me know by emailing me at kapua51@yahoo.com and Mom at lking1963@gmail.com.

Draykes CO2 this morning was 62 which is the best it has been in a long time. He also weighs 8lbs 4 oz. His length is only 18 and 3/4 inches long. He is still getting chubby. His night time nurse told us that he has not stat'd below 90 on his O2. He is still currently at 100% Oz, 38/6 on his pressure and 60 BPM. He is doing better. Mom will be getting to hold little man tomorrow because it is her Birthday.