Failure

Thank you all so much for your hard praying last night. Unfortunately, the PD didn't work at the volume they had him at. They had to stop the treatment half way through because of his oxygen saturation. The worst part is that my biggest fear came true. Max couldn't keep his sats up without having oxygen, which could potentially mean that he is outgrowing his lungs. I don't think I need to explain what that could mean.

The plan is to send Max home with oxygen and a monitor so that we can watch his numbers. Thankfully, he will only need the oxygen while he is sleeping. They are also going to contact pulmonology to see what their recommendations are and to possibly setup a consult with them so that they can take a look at Max. I am scared to death of what they may tell us. They are going to retry the PD this evening on a much lower volume of 100-120mL. If he tolerates that he will come home on it to start the stretching process. If he doesn't do well on it, they will be scheduling the transplant immediately. So basically, we have one shot and one shot only and that shot exploded in our faces last night. Dr. Dixon is also going to contact radiology and see if they can look at my angiogram to get an idea of what the volume of my kidney is. This will help them with seeing how well Max will or will not tolerate the transplant if we go forward with it now.

I would assume that it's safe to say that Max will definitely be on the ventilator for awhile after the transplant so that he doesn't have to work so hard with his breathing when he has a large new object in his belly. I would also say that he will be on the nasal cannula for awhile after he is extubated.

Needless to say, we are petrified. I am scared to death and have been crying off and on since last night. I find myself breaking down more when I am playing with him or holding him. When he looks at me and smiles I break down. I have no idea how much time I have left with my son. The fact that two of his doctors say that it's a possibility that he is outgrowing his lungs makes me realize that we may lose him. I hate that I even let that thought cross my mind, but how can't I? How can I sit here and be happy and positive when I am being thrown nothing but bad news? How can I have faith when not one thing since we have been in this hospital has been good news? Max is coming home on oxygen people! My little boy, who two days ago was fine, or so we thought, is coming home with oxygen support! How can one have faith or be positive?

I will say that it's encouraging that Max's sats are in the 90's when he is awake. Wouldn't someone who is outgrowing their lungs be desating all the time- awake or asleep? Dr. Ben disagrees with the other doctors. He finds it hard to believe. Most kids who's lungs aren't working need trachs, ventilators, etc. Max just needs a little bit of oxygen with a blow by (meaning a mask sitting above his head rather than a cannula in his nose). That's the one positive thing that's going for us. Dr. Ben also said that he feels that if we can get his phosphorus down and continue with hemo that we can buy some time. My only concern is that Dr. Dixon already mentioned to me that the other medication that we have to try and lower his phosphorus will only pull out what he is taking in and not what he is already holding onto. There is still a lot of decisions to be made, so I am trying not to jump to conclusions. Dr. Ben was just in his room and left to talk to Dr. Dixon. He said he will be back later with the plan. I 'll let you all know as soon as I do.

With all of this being thrown at us, I am being forced to think about the transplant, and to be honest, I am scared to death about the surgery. I knew that it was coming sooner or later, but I had faith that he would pull through until he was older. He has always fought and won. I am trying so hard to hold on to that and hope that he surprises us again. I haven't mentally prepared myself for this operation. This is possibly the biggest surgery of my life. I sit here and wonder, what if it something goes wrong? What if it's too much on his little lungs? What if I am sitting in my bed on a totally separate floor and something happens to him? What if he can't tolerate it and I am not there to hold him? I fear that I won't be able to be the super mom that I want to be. I am not going to be able to care for my child as he goes through the roughest time of his life. I am scared. I keep hearing that I can't think about the "what if's," but I can't not think about them. As much as the "what if's" scare the hell out of me, I think they give me strength to fight. Fight to heal faster, fight for Max, fight to be Super Mom. We will succeed. He will succeed. He is Super Man. He will win!