Still planning but almost there

Headband picture just for Grandaddy because we know he loves them.

Sorry I haven't posted in a few days. Internet access at the hospital has been very sketchy.

We have had quite a bit of drama trying to get transport plans arranged. Insurance will not cover it. We were able to get approval another way but only for about 10% of the cost. Now the hospital has agreed to pay for a nurse to travel on a commercial flight with us and all we have to pay for are the airline tickets. We are also waiting to see if we might possibly get approval for ground transportation in an ambulance.

I am honestly worried about the plane because we are supposed to be limiting her access to public because of germs. What place is worse than a crowded plane? Also, even though we can have a nurse with us, there is no way to get to a medical facility right away if something happens. In addition, she has 3 different medical devices that have to be with her all the time. This would be very tricky on a plane. I had to call TSA to make sure they would let us carry it all on and that we could continue to use it during flight. Because they are necessary medical devices, they are approved. Well, approved by TSA but probably not the other passengers because of the noise they make.

Another option is to take her in our own vehicle and stop for the night in Gainesville. That way we would be close to Shands if we needed the hospital.

We were having a very hard time earlier this week with securing all of the equipment Teryn needs. Apparently the company that used to provide apnea monitors to our area has decided not to do so anymore. The MCH social worker worked diligently and finally found a company that would provide and service equipment for us. They had the equipment overnighted to us and had a representative come right out and teach us how to use it all. We were very pleased with how well they got everything to us right away.

We got to the hospital extra early this morning to ask the doctors if we could go ahead and get any discharge things out of the way that we can. So, we have equipment fully charged and ready to go, supplies boxed and ready, prescriptions being filled in the pharmacy, appointment made with pediatrician, our luggage packed, and car seat ready for the car seat test. Now we just need to have a definite decision on transport so we can make any needed arrangements with that.

Here is an update on the leaky tube. As you know Teryn had a new feeding tube placed. It is a makeshift tube that the surgeons had to kind of create. I will have to get a picture of it instead of trying to explain. Even the nurses have a hard time trying to explain to each other what it is because it is quite unique (just like Teryn.) Because one of the ports will not close she has had stomach contents leaking out and hindering weight gain. After a week of having surgeons come and look at it everyday we finally had a surgeon with a solution yesterday. She had a tube of stoma-adhesive paste in her office. She put some in the port and it seems to be a good cork for now.

With all that we know, we should be able to leave maybe tomorrow!!!!! Unbelievable. Yesterday was the 100th day that Teryn and I spent in a hospital.

Tomorrow would be a special day to come home because many of Teryn's friends and family (her fans as we call them) are having a "Treasures for Teryn" garage sale at our church. So many people have been working so hard to get this event together. There has been amazing support from the community as well. We continue to be overwhelmed by the love we see and feel from everyone.