A few questions answered

Of course, after I finally settled down after Wednesdays appointment I thought of a few questions that I should have asked before I even left the office. But my mind shut down half way through the conversation. So, I got to talk to Dr. Ben today and got our questions answered and I feel a lot better about the situation.

Our first question was if dialysis continues to work would we stop it and go ahead with the transplant. The answer is absolutely not. They are hoping that Max will be able to do dialysis for a very long time. They do not want to do the transplant anytime soon, so all of the precautions they are about to do is to prepare him for it if we should have to move forward with it. If they can keep him on dialysis for another year it is to his advantage and it will make things a little easier on the surgeons as well.

Our second question was if Max's current hemo cath went bad, would they replace it or consider hemo a lost cause. The answer again is absolutely not. Max's team is going to do EVERYTHING they can to NOT have to do this transplant anytime soon. So, they would manipulate or replace the catheter to buy us some more time. They are also going to be doing the PD for stretching his peritoneal cavity. This too will give him a little bit of dialysis as well. We are really hoping that a miracle will happen and Max will be able to receive dialysis through PD. This would give us a much bigger advantage for the simple fact that we would have two forms of dialysis if one were to fail. Right now, as far as we know, we only have one option which, of course, puts us at a higher risk.

So, to sum everything up. My post from Wednesday is the plan IF we lose Max's dialysis access and if he fails to get good clearance with PD. IF he continues to do well on dialysis we wait. The vesticostomy will probably still be open when we do the transplant so all of the risks from before are still there. If we can get Max to be a lot bigger than what he is now, we will be in a much better situation. We need another miracle is what I am saying. We need Max to be on dialysis for at least another year so that the risks will decrease a bit.

Everyone keeps asking me when we will know something. The answer to that is we won't. This is a situation that gets played out day by day. Every day that we leave that dialysis unit with a good run is a VERY good day. Needless to say, I sit on pins and needles for the entire 150 minutes that Max is hooked up to that machine. Every alarm that goes off, my heart sinks and I hold my breath that they can get it running again. When Tim takes him, I call every hour to see how things are going. We don't say if they are good because we may jinx it. His response is, "It's going." I live every Monday, Wednesday, Friday and Saturday in fear that his access is going to go out on us and we will only have one more chance at hemo, and that's if they can get a new line in. I keep being told that I can't live like that, but this determines my child's life. If his access goes out tomorrow and they can't replace it, that's it. We loose all that we have worked for. We loose the love of our life, just like that. I will live my life in fear until I see my little boy running around our yard with a new kidney. Still then, I will probably live my life in fear, but for good reasons.

When I was crying on Wednesday, one of his doctors asked me what my fears were and I told him that I was afraid that I was going to loose him. The doctor then told me, "You've done everything that you can for him, isn't that enough?" My answer was, "Not if he doesn't survive." If we lose him then I failed at my job as a parent. My job is to protect my child, and loosing him would mean I failed.

But, after talking to the doctors today and getting our questions answered I truly feel that we are going to beat this. Why would God have put us through all of this just to take our son away from us in the end. That would be cruel and God isn't cruel. So for now, we wait and pray that we can hold this off for a very long time.

The results of my CT scan are in. They aren't fantastic but not horrible either. I have an extra vessel coming off of my left kidney, which is the kidney that they like to use in a transplant. This could potentially be more challenging during transplant. One of the surgeons that could be doing my part of surgery said that everything should be fine. If need be they could take my right kidney. They have an email into Dr. Sheldon, who will be performing Max's part of the surgery, to see what his thoughts are about it. There was no word from him when I left the unit this evening. I was told that either way it goes, things should be fine and I should move forward with the testing. So, onto step #3. I will be going to University Hospital for these next tests in April. Lots of blood work, chest xray, another type of scan (I think), 24 hour urine collection, needles needles and more needles. It doesn't matter though. No matter how afraid I am of them... if means I can save my son's life, it's all worth it. He has been through so much worse than what I will go through and that is what gets me through this. He is my hero.

Have a great weekend everyone!