Thursday, January 7, 2010


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!


phonelady said...

yes damn diabetes and I hate seeing little kids like Madison with it . It is not fair . It is not fair for anybody to deal with it . I will pray for you and your family Kelly and hugs go out to you and yours as well.

Katerina said...

ok you lost me there what do you mean fake? How did she do it?

Kelly said...

Fake....Maddison faked her numbers by leaving some alcohol on her fingertips when testing to dilute the blood. She also skewed them by spitting on the blood to dilute it.

WHY? Because she is too darn smart. Because she can. Because it gets her out of a boring stressful classroom and because she wants me to pull her out of school and be homeschooled. She knows if Diabetes is CRAZY and dangerous at school I would take her out without hesitation. School issues. Not Diabetes issues.

Meri said...

OMGOSH! How did she figure that one out?? Was she told how? If she just figured it out on her own...she is amazing. Really impressive...yes it was totally bad...but you've got one smart chick on your hands!

Thank you for your amazing offer! How sweet and generous are you?!! I have a call into our endo to see if our insurance has changed it's tune this year. If there is a way to get it covered...she will know what to do. I wouldn't feel right taking yours anyway...the way diabetes may need it next week! Hope you are taking care of worried as I am about your dad...I worry for you too. Thanks again friend. You are wonderful.

Anonymous said...

I remember those posts when the low bg was happening. I pretty much assumed that she was faking the low bg but did not want to say anything. No parent likes to hear that and really, no parent would be quick to believe it. I am glad you found out though and it is being handeled. We are going through something like this with our son right now and it is like trying to weather through a storm! Keep on doing what needs to be done. That is all that we as parents can do.

I pray that your dad will have a quick recovery.

katerina said...

wow!! I am impressed and shoked of what our kids can do to avoid school. I can remember warming up the thermometer but this takes it to another level!