Max is having surgery tomorrow :o(

Max is going into surgery tomorrow to place a catheter into his abdominal cavity that will be used for his peritoneal dialysis. They are not in urgent need of starting it yet, but they like for the catheter to heal before they do use it. Max's levels aren't really getting any better, although the urine that was backed up into his left kidney is better. They are thinking that if the levels stay where they are that he may be starting it some time next week.

One of the nephrologist and resident talked to Tim and I yesterday a little about what needs to be accomplished before Max gets to come home. When they start the dialysis, they need 2-3 weeks to figure out how much he actually needs and to be able to start him on the machine that we will eventually bring home with us. His vesticostomy will stay open when he is discharged, so he will still urinate through that rather than through his penis. Max is having a hard time gaining weight as well. He has been spitting up quite a bit, so they are starting him on Protonix to see if it is reflux. He is also breathing loudly (sounds congested) and they think this could be caused by reflux as well. They are planning to do a scope to see if his airway is swollen or if it looks like something else is wrong. He also needs to learn to eat from a bottle. He is doing okay with this, but it wears him out rather quickly and it increases his breathing rate a bit. Unfortunately, it is possible that we could be coming home with a G-Tube that will help him receive the nutrients that he needs since the kidneys are "stealing" some of them away from the rest of the body.

I am going to go ahead and throw this out there so that everyone knows. One of the highest risks for Max's catheter is infection, so when he does come home and starts receiving visitors we ask that if you are sick or have any signs of getting sick that you postpone your visit. We will also have very strict hand washing rules with him. He is going to have two, possibly three, holes in his abdominal area (catheter, vesticostomy, g-tube)and we cannot run ANY risks of them getting infected. This is life threatening to him if it happens. Please understand that we want you all to be able to visit him, but we need him to be and to stay as healthy as possible so that we don't end up back at Children's. If anyone has any questions please don't hesitate to ask.

Also, we were informed again that we will be the best candidates for Max as far as donating a kidney. The doctor told us to make sure to eat healthy, to exercise, and overall be in good health. We won't start the testing for this for about another year or so.

Please keep Max in your prayers that all goes well tomorrow and that they're aren't any complications with the surgery. I will post another update as soon as I get the chance.

Thank you!
Beth, Tim and Max