137th Day in the NICU

My Morning started with a call to Pegi and I left her a VM. Drayke is still 8 lbs 9 ozs and he is so chubby. Pegi called me back and we spoke in length. She stated that last week all the department met and they all were on board but the only team that was not there was the CT team. Well this week the CT team was there and they reviewed all the data. They feel that since Drayke had a issue coming back from the sedation from the CT scan last week that it would be a big risk to put him under for the surgery. Also his weight and him being unstable at times was a part of this.

I totally understand and I would rather Drayke be able to survive the surgery. Pegi did say that when Drayke becomes stable and his weight increases we can let them know and they will go over his case again. I asked her if Dr Sweet (World reknowned Pulmonologist) would do anything different than what the doctors at Centennial were doing and she said that when he went over Drayke's charts that he would be doing what Centennial is doing. This is a relief for me. Pegi did tell me that BPD can be overcome just by waiting and by him getting bigger and becoming more stable. The damage to the lungs are irreversible but he can overcome the BPD and if he overcomes that then the heart should get back to normal size. He still may need a transplant but she says there are kids that live for years with BPD and Enlarged hearts. Pegi told us to not to give up hope and that let the Doctors take care of him and with him being in the hospital it is easier for them to take care of him instead of us bringing him home and having to rush 1 1/2 hours to Centennial.

I asked her about changing hospitals and she said she could not tell me either way. Chances are that if we get a trach for Drayke that he would have to go to Vanderbilt and there is a chance they will not transfer him back. Either way we are a little relieved that this is not the end. There is a chance he can outgrow this and that we have a goal to reach in order to get him a transplant.

When we saw him today he was stat'ing in the mid to high 90's for the entire 2 hours that we were there. He did not destat once. He was looking around and smiling and sucking on my finger. Apparently he likes my finger better than Moms :-P. He definately has a personality and he loves to be talked to. We did mention to the nurse that we would like for him to start PT (Physical Therapy). Like laying in a bouncy seat type of chair. Even if it is not moving and he is just sitting in it. Maybe if we start getting him out of the bed and sitting up and start moving all about that his body will kick into gear and start producing the required items he needs to grow and get better.

We have decided that since COTA is only for those on a waiting list for a organ transplant and if we do not get a transplant all the donated money for Drayke would end up being sent to other needing family. We decided that it would be better to get in touch with the social worker at the hospital and see if there are any other way we can go about this instead of having people just donate money to us personally. (Donations have to be reported on taxes). We have talked to Bank of America about setting up a Foundation account for Drayke and we will get that going. We may even setup a Paypal account temporarily and when we get everything situated we can transfer that into the foundation or the charity that would hold the funds for Drayke.

Here are the pictures taken today.