As the race in the States becomes scarier, we're facing a scary race of our own between the rapid deterioration of Daniel's health and the wait to get Daniel a new set of lungs. In the last month, it's frightening how much his health has changed. From being able to walk half a block to now not being able to walk five steps to the bathroom. We're running out of time and everything we're seeing just confirms that. Daniel's main doctor came in yesterday to tell us we need to begin thinking about palliative care. Palliative care. We can't be there yet, we just can't. But, if we don't get Daniel actively on the list for a lung transplant soon, we'll probably have to do more than just think about it.
I've spent the last two days calling and leaving voicemails for the lung transplant team, concerned with how long this process has taken, concerned with Daniel's rapid decline in health from two infections and concerned about our future. Well, today, we got some news that does nothing to encourage us. There was concern about Daniel's liver at the end of August. The results of a biopsy in early October seemed to demonstrate that everything was "normal and boring". So, we waited to hear from Edmonton about getting Daniel active on the list. Today, the head of the transplant team and the transplant coordinator told Daniel that they had received a report from a liver specialist that he is concerned about the high blood pressure or hypertension in the veins in his liver. They're now asking the question if he needs a liver transplant as well, if he'll be fine with just the lung transplant, or if this new problem makes it too dangerous to do a transplant at all.
The next few days are going to be filled with appointments, tests and more waiting. They want a scope of his stomach to get a closer look at his veins. Everything has also been sent down to Edmonton for their liver transplant team to make a decision about what they think is best for him. But for once, there seems to be a sense of urgency. We need answers and we need them now. If we didn't know we were fighting for Daniel's life before, we certainly know it now.
Everything is on hold now until we get more news, more of a picture of what we're dealing with. I've taken the week off of work to deal with the doctors and do my best to get Daniel on the list for a lung transplant as soon as possible. It's time to move mountains.
Laura
