On The Same Page

We had a positive day finally. I feel like there was a while when things were not going as well as I would have liked them to and now they are finally swaying back in our favor. We had a blood draw today and the first two pokes didn't go so well so they were going to try a third and last time. I said that we could try a third time and if that didn't work we should try to just do a finger poke and get the absolute necessary labs. They said that they would be able to get everything they needed with a finger poke. Joaquin didn't cry when they poked his finger and just watched them as they squeezed his finger to get the blood. Only towards the end did he cry and that was only because he didn't want the lady to hold his finger anymore. I'm hoping that we can just do the small labs this way now. Sometimes we have labs where they want to screen for everything and then there are days like today when they just want a relatively small amount of tests. I don't know why no one ever said anything about that before, but from now on, we know.

After the blood draw we went across the street to the clinic. When Dr Wong came into the room we talked more about his formula change. As of last Friday we switched to half Pediasure, half Nepro. Since Joaquin had been on the Nepro, his appetite had decreased which was very disheartening for us as his appetite had picked up after the transplant. We think that it was also that the Nepro was just nasty; it obviously was upsetting his system. The Nepro also had a higher caloric content which means that if he's getting all his calories that he needs for the day with the Nepro, then he wouldn't have the drive to eat. Now that he's on the half and half his appetite has returned. Also, today Dr Wong charted him on the growth chart and he is right about dead center for both height and weight now. She said that the half Nepro and half Pediasure wasn't giving him all the nutrition and calories he needed, but the fact that he's growing and gaining weight means that what we are feeding him is making him grow.

And then Dr Wong starts talking about how after everything has happened to Joaquin with the anesthesia and then the Pentamodine, she doesn't think that it would be a good idea to put him through the biopsy. We had not yet told them that we were going to refuse the biopsy. I feel so good about the fact that she was the one to bring it up to us. I told her I agreed completely. She said that we would do the 6 month, 1 year, and 2 year biopsies, but we'll cross those bridges when we get there. It feels good to be on the same page with the doctors finally. Dr Wong said that the Pentamodine disaster put her over the edge and that since Joaquin was looking good and his number were so good that she would talk to the rest of the transplant team about not doing the biopsy that they had scheduled for the end of the month (but we were going to refuse.)

We were also having issues with our prescription insurance telling us that we were terminated and that we would not be eligible for prescription coverage until next month - which we would mean that we would have to pay for prescriptions for this month. Amy, the nurse, said that prescription for one month could be up to $17,000. So I called the prescription company today and told them the whole situation. They had said that they would reimburse us because it was their fault, but how are we supposed to cover them until they reimburse us? She transferred us to the pharmacy section and then she got the Medicare people on the phone and we were able to figure everything out and make it so that were eligible today. I don't know why we were told it would be a month, but it's relieving to have that resolved. It's the last thing we want to be dealing with right now, but insurance companies always seem to be doing stuff like this to us.

So it was a good, positive day thankfully. We have no labs tomorrow and hopefully we will be back on our once weekly lab draws once again. I don't know why were in that little funk a while ago, but the funk has seemed to lift.