June 8, 2009

Rough Weekend

Max came home from his Saturday dialysis looking very dry. His little eyes were dark and sunken in and his lips were extremely dry. He had severe diarrhea that got to the point that it was clear and was running a low grade fever. He was also VERY cranky ALL weekend. The poor little guy ended up getting dehydrated so I had to make up a potassium free oral rehydration solution that the doctor gave me. He finally started to feel better Sunday night, but woke up this morning at 6:30 and screamed until 8:30am. Needless to say mommy and Max are very sleepy today. He is doing MUCH better this evening and is sleeping comfortably in his bed.

PD is going well. *going to knock on wood* It has officially been one week since we have been home on PD and oxygen. We've only had a few alarms which is down right amazing. (Can you believe it RCNIC nurses?) Aside from the PD, Max's numbers have been all over the place. We are working hard on getting them figured out. His phosphorus, which has been VERY high, dropped to be VERY low. It is now pretty high again although it's slowly getting better. We're definitely getting there, I hope. They are going to check his labs again on Friday after a few days of the changes that were made today. They also restarted his growth hormone. Although it stinks to have to give him a shot every day, it's a very good thing. Max only grew .4cm in the course of about 6 weeks. He had a great weight gain, but he is getting wider and not longer. My poor chunky monkey.

My final two appointments with anesthesia and my surgeon are scheduled. Max has his appointment with Dr. Sheldon on the 19th. This is the BIG transplant conversation that Tim has to take off of work to go to. He really wants to go over everything now just in case we have to move forward. Everyone is just trying to get all of their ducks in a row so that we're ready for when the time comes. As far as when this could be taking place: Anywhere from this week to 3 years. We have no idea. At this point they are just saying if he continues to tolerate dialysis, grow and develop then we are holding off. My question was at what point do we say "okay, let's transplant?" I didn't get a direct answer, so I will readdress this when I see his primary nephrologist at the end of the month.

Milestone: Max is OFFICIALLY rolling over to his belly and holding his head up, rather than face planting into the floor and having his arm stuck underneath of him so that he's not totally on his belly. YAH for Max!!! I love hitting milestones. Now we have to get him on his hands and knees!

Enjoy your week!

1 comment:

Jodi said...

Sorry for your rough week! {{hugs}}

Yay for moving forward, and especially for milestones! Hooray for Max!

Prayers all around.