115th Day in the NICU

Today is probably the worst day of them all. This morning we were told the Echo showed that his heart has hypertension. 2 of the Dr's told us flat out there is no chance of survival and that they have done anything and everything they can. Dr P pretty much told us we had 3 options.

• Disconnect everything and let nature take its course.
• Give him a trach and let him go home and he may last a month (maybe).
• Keep him sedated and let him keep at it with no further action.

Dr P wanted us to sign a DNR but I will not sign one. He wanted us to sign one before we left the hospital which we did not do. We went in and saw him and cried and his mom got to hold him and he was doing good (mind you good is a relative term). I called up my other half and she got online and did some research. One thing that stuck out was a hospital in St Louis, Missouri that has been doing infant lung transplants since 1994. We have been told time and time again that infants do not get lung transplants. I had mom call them up and one of the criteria is that he was born after 28 week. We are in luck because he was born at 28 weeks 3 days. The bad thing is that before anything else we needed to get insurance situated so mom called Tenncare and they said that normally they do not allow out of state care but if it is an emergency that they have a transplant coordinator that we need to get a hold of. We left a message and hopefully she will get back to us tomorrow. We also got a hold of March of Dimes and will have to call back tomorrow as well.

Since things were going so bad we had mom's mother come up to see her grandchild. (Today is her b-day as well). We had to leave the hospital but mom saw Dr I. He is the head of all the neonatalogists there and he wanted to talk to us anyways so we had a meeting with him. Mom explained to him that we need a refferal in regards to a lung transplant and that is when he hit us with some news. He wants to do the viagra treatment. Apparently he was the first Dr in Nashville to do it so he is familiar with it and he thinks it will help his heart and lungs but his lungs will still be sick. He is also aware of infant lung transplants and his is willing to do research with us to help Drayke get the best possible assistance. This was a major relief since the other Drs under him was not willing to do the treatment and did not know anything about the infant lung transplant. Dr I wanted to start the viagra treatment ASAP if he can get the pharmacy to give him the drugs.

We went to the airport and picked up grandma and went to grab a bite. After dinner grandma finally got to see her grandson. We also found out that he got his first dose of viagra at 6 pm and will get it every 6 hours. His stats were doing okay. He was down to 45 breaths per min on the vent, 100% O2 still, and still 32/5 on his pressure but his Spontanous breathing was anywhere from 30-40 bpms and he was stating high 80's and low 90's which is good for him. Of course he was coughing alot and the Repsitory therapist said it could be the viagra breaking stuff up in his lungs. I am hoping that this works because if they can get the hypertension in his heart down then they can do a lung transplant. There is still research to be done but there is hope. We refuse to give up on him.