Bored... and scared.

"Bored" is the best way that I can describe our no longer going to the hospital several times a week. We're bored and I refuse to take Max out of the house unless absolutely necessary because of the swine flu outbreak in our area. So... we're bored. We miss our doctors and nurses. I miss sitting there in my rocking chair chatting with other adults. Granted, we have had to go to the hospital twice this week for other appointments, but it's just not the same. I can't joke around with other departments like I can the dialysis unit. We miss you ladies :o(

Onto the results from all of the tests and appointments Max has had over the past month. The sleep study came back better than the one before. Max has a mild case of sleep apnea (which we knew), but it's fixed with his 1/4 liter of oxygen. The doctors think he will out grow it within a year or two. With that said, pulmonology doesn't need to see us for another 3-6 months. So basically right before the transplant.

As far as Max's renal (kidney) ultrasound goes... I didn't ask for the results because I forgot and Dr. Alam didn't say anything negative about it, so that was good enough for me. BUT... I was reminded once again about how dangerous and high risks Max's next two surgeries are going to be. I am petrified of the outcome. I can't help but think about the chance that Max may not make it through all of it. It kills me to think that everything that he has been through and the one thing that we have work so hard on could take him from us. I just hate being reminded every three months that Max isn't out of the woods yet. Needless to say I have been very down since his appointment yesterday. All of this rain, swine flu cases and robberies going on in our area aren't helping at all. I am just so scared. To top it all off, we were really hoping that both surgeries would be over in 2010, but Dr. Alam told us that he would preferably not perform the reconstruction until a year post transplant, which means we move into 2011. I just want this to all be over so that we can move on with building our new house, extending our family and go on a very long and very far away vacation. I just want it all to be over.

I ran into another transplant patient, Peyton, in the lab and her mother was willing to answer some of my questions regarding the bladder reconstruction. She told me that it is very scary but that the end result is much better than before the surgery. She also told me that Peyton's surgery lasted 16 hours. That is not a typo. I knew that particular surgery was a long one, but 16 HOURS!!! Oh my goodness!!!!! I am going to go insane.

On a more positive note, I have heard from a little birdie who knows another little birdie that Dr. Sheldon is in remission. Thank you God. Dr. Alam (this is not who told me) informed me that there is a chance that Dr. Sheldon could be back by the time Max's transplant is scheduled on the spring. He did say that he probably wouldn't be the one performing it, but he would probably sit in on it. This, of course, makes me feel a whole lot better. Please pray that this is the case and that he will be there to watch over Max during these two very difficult operations.

I have to put this out there because I am so thrilled to have seen it. Our RCNIC nurses are doing a presentation in Texas on Max's PD. They sent me the presentation in PDF form. You'll never believe this, but there is a picture of Max back when he was delivered partially at 22 weeks during the open fetal surgery. As soon as I saw it I starting sobbing. I have been wanting to see these pictures since the surgery and to my surprise there it was. His tiny little leg resting against the surgeons hand as he put a little hole in his belly. UNBELIEVABLE! The file was in PDF form so I have no way of copying and pasting it into the blog. I am trying to get my hand on the rest of the pictures so that I can show them off. It's absolutely amazing!!!!

Anyway I am going to end this with prayer requests. We need you to please pray for Max and for Tim and I as we prepare for the upcoming surgeries. 2010 and 2011 are going to be two very rough years for us. We need as many prayers as we can get. Most importantly though, we need you to pray that Max pulls through both surgeries without any major complications (infection being the biggest concern for the transplant). Please pray for our strength.

Please pray.