It has been confirmed that I officially HATE peritoneal dialysis. After two low drain volumes last night and having to bypass one of them they decided to stop the PD once again. The attending on this weekend predicted that this was going to happen considering Max has had dialysis now 5 days in a row and his little body is dry. It only makes sense that if you put fluid into a someone who is dry, the body is going to act as a sponge and absorb it. So what does this all mean? Max is NEVER going to get out of here! The doctors want to do another 12 hour run today to see how he does and too make sure that he can tolerate it (even though he proved that he can on Friday night). So I told them to start the PD while the doctors are here so that they can see how he does on it rather than them calling in and getting report from the nurse. They were concerned about his 100mL feeds on top of the increased volume of 220mL of PD fluid. So I came up with the brilliant idea of a continuous feed so that he isn't getting as much of a volume as a bolus. They agreed. So we are getting things ready to hook him up now.
They also said that they want to send him home on oxygen whether he goes home on PD or not. This TICKS me off to say the least. They are making this decision based on a sleep study that was done on him with 200mL of fluid pushing against his diaphragm. Max has proved for 10 months now that he DOES NOT need oxygen when he is sleeping. AGH! I am so peeved off at everyone right now. I know they just want to be sure but there are NO evidence that says that he needs it. It breaks my heart that I am going to have to torture Max with having to put a nasal cannula on him every night because of a study that didn't evaluate that particular situation.
I have planned on being here for another week although they say tomorrow. We were also told Saturday and then Sunday and now Monday. Just like when he was in the RCNIC, I'll believe it when he is sitting in our living room. We are all so bored, so it's making it very hard to entertain a 27 year old, a 25 year old and a 1 year old all at the same time.
I'll keep you all posted on how this run goes. We should know within the next few hours how things are looking.
2 comments:
Beth, Tim, and Max,
We hope you are able to get out of the hospital soon, and things start to improve. We continue to pray for you all.
Love,
Kristina, Cory, and Anna
They are giving him a 220 ml fill? Logan has been on PD since Aug and he's still on a 250 ml fill. And 100 mL feeds, is that an hour or over a longer period of time? Logan can't handle 30 mL/hr feeds without throwing up at least once a night.
I am praying that PD goes well for Max and he doesn't need oxygen at night and that you guys are home today!
Jessica
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