Today is Hemodialysis day again. Every 2 days. Peritoneal is done 5 times per day, keeping blood more "level" without spikes of toxic levels. We have been pleading for Dad to go back to peritoneal, so his levels stay safe, not spiking to toxic and then back down again. (Hello! Thats what makes Hemo so invasive!!) All they keep saying is that all patients that are this critical stay on Hemo until they can resume the Peritoneal process themselves. ACK! Whats the sense in keeping him on Hemo if the levels spike to toxic amounts between days?!! He isnt fluid overloaded, so the concern isnt removing fluids...its just cleaning the blood!! So, I talked with the Dialysis tech. She agrees Peritoneal should resume to stop levels from spiking. I told the nurse if we need to run Dads Peritoneal 5 times a day ourselves, then we will do it. I'm waiting to talk to the Nephrologist. I just dont get it. We understand Hemo is needed. But they could also add Peritoneal to keep him level in between the days. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!Imagine if we only gave insulin for food every other day. Thats kinda the same as Hemo. Its the same in many ways. Spikes. Drops. Not the best option. Drains everything you have.
Again. Hemodialyis again today. That makes me sick. Every Hemo day dad goes downhill. Last Hemo day on Sunday Dads heart rate dropped and he ended up intubated. Maybe it wasnt the Hemo. Maybe it was the failing condition of his lungs. Maybe it just WAS. But I'm sure Hemo didnt help the situation. I'm not going to work today because its a Hemo day. I got my necessary stuff at work done yesterday. Today work will wait. And I will sit here and remain hopeful. Thats all I can do. The pulmonary doc wants to try and wean Dad off the vent today. He is on 40% forced air. I guess the possibility of weaning him back to breathing is a positive. Just staying positive!
I had an interesting conversation the other day with Maddison. We haven't used the CGM since Xmas vacation. Maddison's numbers have been pretty darn good for the most part. Sometimes you just dont have it in you to fix a few problem areas. You just wait for them to settle. So, the school nurse was asking if Maddison will go back to the CGM this week. I told her Maddison needs a break from it. The red sore areas from the insertion of the sensor and tape rawness need to disappear entirely before I bring back the CGM. I asked Maddison how she feels about the CGM. She said its an unfair "PUNISHMENT"...................YIKES. Let me clue you in....all Maddison's LOWS in school that haunted me for weeks and didnt make any sense....were faked. She finally confessed. Trust me, the nurse is aware she wasnt watching Maddison correctly. So, Maddison sees the CGM as punishment for faking her lows. I promised her its not punishment. Its to keep her safe. To keep her honest. Now I dont know what to do with the CGM. Perhaps use it for myself. Right now the CGM isnt necessary. Maddison knows if "lows" come back she is back on the CGM. CGM as a "punishment"????? Not what I expected to hear. Not what I expected Maddison to feel. Damn Diabetes!
Moving my blog again
4 years ago