Lots of Info Coming at You

Good afternoon everyone! It has been a busy week here in the Max household. I have a lot of information to share. I will start in the order that events happened. So, here we go:

We have a medication that we are trying called Renagel. This is a binder that we are putting into Max's formula to pull the phosphorus out. The only place that we can get this drug is from a pharmacy in Michigan. We noticed that for some reason we were going through the powder very quickly. So Dr. Dixon called to get it refilled and the pharmacy told them that we shouldn't be going through it that fast. After they looked at all of the info they realized that they (the pharmacy) MISLABELED the drug. We were OVERDOSING Max on Renagel!!! Guess what they're doing to make up for their mistake? They're sending us ONE free refill. What the hell? Luckily this medication is skimmed off of Max's milk, so it's not going into his system. But what if that was morphine or heparin or anything else for that matter? They could have KILLED my son. I am INFURIATED!!! Needless to say, so are Dr. Dixon and Dr. Ben. We'll see if we make anything else of it. Lesson learned: Check your prescription labels!

Anyway, Max's catheter has been working so far this week. We go packed every time we go in, just in case. It's working. Nurse Sara changed his dressing on Wednesday, and believe it or not, the catheter was actually pushed in a little bit. Rather than a 1/2 inch it's only out about a 1/4 inch beyond the cuff. With that said, it's still falling out, but we're safe for another week as long as Mr. Busy Hands doesn't take us all by surprise.

Pulmonolgy has cancelled his sleep study for next Tuesday. They didn't realize that Max's wasn't on his full dose of PD fluid. So they found it silly to proceed with the study. They will reschedule it once he gets to the 400 mark. They are going to do the saturation study next week. We think they are doing it on Tuesday. We are able to do this test at home, so they will bring the machine here to the house and we will connect him that night to monitor his oxygen saturation.

With that said, here is the PD plan. As Dr. Ben says, "we have to stay ahead of the catheter." So they are going to increase it volume from 250mL to 270mL on Friday (tomorrow). As long as that goes well they are going to make a jump to 300mL on Monday. If he continues to tolerate that, they will be working up to the 400mL mark over the next three weeks. From there they will do the sleep study to make sure he is breathing okay with it and that he is able to remove the carbon dioxide from his body.

I had my surgery consulation with Dr. Tiao yesterday. That went well, but he gave me some VERY bad news. Dr. Sheldon (Max's transplant surgeon and urologist) is very ill. I am not sure what is wrong with him, but Dr. Tiao said that it was going to put him out of work for a long time. He also said that since he is a little older, this could actually push him into early retirement. I am very upset about this. This guy is recognized across the world for his expertise in exactly what Max has. I don't want anyone else doing Max's two biggest surgeries. We want Dr. Sheldon and only Dr. Sheldon. We are so worried about him, so please pray with us that he gets well soon. Not only for Max, but for himself and for all of the other little ones that are his patients. This is a huge devastation to the urology, nephrology and surgery departments at Children's Hospital.

Okay, I think that is it. I feel like I am forgetting something, but I think that was enough for now. I will repost if I think of something else to say.

Enjoy your nice and cool weekend!