This day started out with high expectations. I truly thought that I would be able to find out SO many answers. I got some, I'm not sure they were the answers I was looking for. But in a way, they were.
I had my Care Conference at 3:00 this afternoon. This conference was actually planned last week when they were trying to get Elaina moved to the floor and they had been talking to me about hospice, DNR papers, etc. The reason that we waited until today for the conference was that Elaina's cardiologist, Dr Cowley (we see him both in and out-patient) was not available until today. I'm glad that we waited. Dr Cowley tells it like it is, and I really respect that. He told me that he agreed with the decisions I'd make concerning Elaina's DNR and he said that he would continue to advise me on it (for possible revisions) when and if it was necessary. He said that he thought it was worth sending Elaina's records to Stanford, but he said that he didn't think that a heart/lung transplant was something that he would recommend for Elaina. He told me that the waiting list is two years or longer sometimes and that the last he heard, it only extended life by a year and that it was a miserable existence for the lung recipient. He did support my decision to get the information from Stanford and to make an informed decision on my own. He also told me that he thought that there was a chance that Elaina could continue to improve and that if she does, there will be other surgical options available for her down the road. Probably not until she is between 3-5 years old, but options will become available the older she gets. This is all dependent on her lungs improving and her pulmonary arteries growing with her. Of course, no one has a crystal ball and no outcome is ever a guarantee. We just have to take it one day, one week, one month at a time. We also talked about feeding methods. Right now NJ is the best way to go. We cannot risk stomach contents that she could potentially asperate. Eventually we would like her to have a Nissen and G-tube, but that would be 4-6 months down the road. She isn't strong enough right now to go through another surgery, and since she tends to use her stomach muscles to breathe, having them sore from surgery would really decrease her ability to get stronger. In all, the conference was very good and I know that I do have a good grasp of the situation as a whole. Anyway, there is a concern that I will be able to manage all her cares by myself when we get home (shhhhhhhh....we're aiming for m-o-n-d-a-y), so the team was hoping that I would be able to have a couple of family members come and spend a day learning how to do some of her cares so that I can have a helping hand now and then. They've strongly advised me not to take her many places in public. They said that a walk in the park or in open places is okay, just not allowing anyone to touch her or get too close. No church, no stores, and very very cautious at the doctors office.
Once the care conference ended, Elaina was taken in for her scope. It lasted less than 30 minutes and they said that everything looked good. There is some scar tissue on her vocal cords, but that's to be expected with how long she was on the ventilator. Otherwise they didn't find any obvious obstructions. They said that her obstruction is most likely in the soft tissue at the top of her throat (which they can't repair surgically) and she will outgrow it eventually or it could be due to all her secretions. Either way they fully agreed with the use of her c-pap. I really feel like it make a huge difference today. She was on it for 12 hours last night and all day her saturations hovered around 80 on 1 liter of oxygen. It was great! She also didn't have any fevers today and didn't need a whole lot of extra sedations. I'm willing to take as many good days as she's willing to give me. She really wanted to snuggle when she got back from the scope, and I was glad to be able to give her lots and lots of extra hugs and kisses!