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[LBLNJ0668]

no info he is going home supposely today I give up no one cares.  I think my brother is giving up also

[paulie]

Sorry LB. Of course you're worried and upset. One good thing is a nurse will arrive daily for feeding tube so if she thinks your brother should be readmitted she'll tell his Dr.

[LBLNJ0668]

good morning.

[paulie]

Hi LB, Is your brother home now or still in hospital? Hope you say hospital still because I know that's what you think is best for him.

[LBLNJ0668]

hi Paule, he came home yesterday. A nurse came yesterday to hook up feeding tube someone is coming today to sho them how to replsce the feeding bag each day.  I  am going there to find out how too.  He has to go to the cancer ceneter to check his blood tomorow. I know the last 3 days he has needed blood.   talked my one nephew into taking him there so my father doesnt have to since he is offf.   Insurance company kicked him out in ther eyes he is healthy enough to be home, He goes for another biopsy in 1-1/2 weeks.  then sees dr 2 weeks later. Not sure if I can get to any of those apppointments.  I am going to have my brother call me when  he sees dr so I can listen in   al my preop appointments start next week.   

[paulie]

Good Morning,

Happy Labor Day to all!

Family is coming here today for cookout. I set up the two buffet tables yesterday and did some prepping. Will finish the rest in a bit.
Where did summer go??  Seems like Poof!!


Hi LB, Okay to your brother being home. I wondered if insurance had something to do with him leaving hospital. Good about nurse and instructions. Good too your nephew will take your brother so your father doesn't have to. You've done your best attending his Dr appointments. Good if you can listen in since you can't go. Wow your pre-op appointments begin next week. When is your surgery date?

[karengramke]

Wow. lB. You have a lot going on!  The happy part is yourknee will soon be in working order!     Can or will your brother go to a nursing/rehab place?   I have to read back and see why he. Has feeding tube.   Guessing chemo but will go back and check!
Pauli, Happy La or day!  Enjoy the family and the cookout!

[LBLNJ0668]

Good day   He didnt want to go to the the rehab he had a choice I think he should have I found out aftger the fact.  Feeding tube is a nightmare not bad but a lot steps but they are repetitive.  I worte out th enotes step by step on the stuff I am comfortabe with I am goin gback tonight when they put the feeding tube back in so I can rmemeber those steps and add those steps in.   Its a long story but I think my one nephew can do it.  he just needs to bud u his confidence. he is nervouse. These kids are now adults but grew up with learning disabilities so this is difficult for them.  There is so much dilema going on I pretty much asked my brother oif he wanted to die.  He said if he coninues this way no. I said well that is your choice you need to fight this battle.  think of it as a war you against the chemo.  you need to fight yur battle I can hassist yu in th ebattle but I cant do it for you . You need to do it!!! I went in more detail in why. if he wants off feeding tube he needs to eat. eat through the pain a little each day and then add more.  every couple of days.  My nephews then asked when he is going to be off tube I said once he eats and gains strength. If they take him off he will die eventually. so I told them to stop enabling him.  dear god please help me to help him and get through his thick head he needs to fight!!! all of them .  I am tought I nev er relaized how tough I was .   I cant sit there and watch someone  die when they arent even trying.  Sorry I had to vent.  Karen he cant eat because of the soars in his mouth. it huts so I told him to do his rinses to numb his mout then eat.  of course soft foods for now  Thanks you for reading getting through my many typos.

[LBLNJ0668]

morning

[paulie]

Hi karen, Thank you and yes we had a really nice Labor Day cookout with family. My youngest granddaughter 9 years stayed for a sleepover. Where did the summer go?!  How are things with you and Piper? Good I hope.

[paulie]

Oh my LB! God bless you. Yes you are very strong. You are very determined too trying your best to help your brother. It was very good and yes tough advise you gave him. Very good advise you gave your nephews also not to enable him. My heavens you have your hands full trying to help them but you also have your own life and work to concentrate on too. This must be exhausting and very stressful for you. But! You are strong I agree. You can vent here anytime.

How are your prep appointments going?
Are you working in office this week?

I think your NJ temps have dropped to the comfy cool 40s at night and 70s during the day like here in PA. Feels good! It has made taking walks more pleasant so I've resumed my walks. Are you still taking walks? Hope so. That will help you relax some .. just walk, take deep breaths of fresh air and enjoy being outside. 

[LBLNJ0668]

Hi   Yes I am still walking but not today I porobably wont walk until saturday. I think I will be goinfg to my brothers to help with feeding tube this week.  hopefully by the end of the week thye will be comfortable enough to do on their own .   Cory  he did perfect today but he 2nd guesses himselfself  he gets so nervous   He works tomorrow so its wit hte other nephew who hasnt done it yet  They were able to remove the tube and clean the tube without me today so thy are good at that part. its utting the vitamins in the feeding bag and then attaching the tube onto my brothers tube connected to him.  It is hard.  A lot of steps but he knows it!!

I am in the office this week but I had monday off and I took yesterday (tuesday) off.  I am home next week but I mhave to go to the office wednesday its safety week so they are doing something wednesday so gotta go.  I get to leave afterwards but I will stay in office to trian my coworker in person and leave once shes had enough LOL

My preop aapointment is next tueday (I have 1/2 day) then 1-1/2  weeks lateris my primary and pulmanry.  Oh weell  I iddnt realize how close it is and now I am getting nervous.  I wont be availbale for my brother for a good 3-4 weeks .

I made hi laugh a fww times  I got him to drink some  I told him he needs to eat more each day in order to get feeding tube out.  he looks miserable  He gets his biopsy on Tuesday,  I cant go with him this time cause I have my own nappointment.  I am also so nervous about the result of his biospy  what if not improved.  He cant handle much morre chemo (stronger doses) His mouth is still bad Nothing they can do other than wiat it out   I dont think I can go to his next appointmtnet with oncologsit I am going to try or at least have them call me so I can hear and ask questions. 

Weather is beautiful  I love it!!!! I am still in disbelief of my sister and th elack of remorse or anything she has for my brother. it upselts my father too I want to say so much to her.   I think I will wait until after I odnt need her for my surgery, She may turn on me

[paulie]

LB, Okay about your walking. Very good that your nephew did perfect today with your brother's feeding tube. Tomorrow your other nephew will do good too. What you describe does sound like a lot of steps!!

You are training your co-workers for when you're out for your knee surgery, correct?
You've done great helping your brother so far and now his son's are helping and doing good so please remember that because you have to take care of you too. He'll be good for the 3 to 4 weeks you're recovering. He'll have his sons and your father too and visiting nurse maybe. It's nice you made him laugh and got him to drink.

Whatever your sister's reasons are for her lack of concern .. well that's for her to deal with. Your father can speak to her too. Agreed in the meantime to you not saying anything. You know what you're doing. 
 

[paulie]

LB, I hope all's okay. Hoping you've just had a busy day.

Tomorrow morning I go to my rescheduled cataract consultation appointment. Remember the first time I went I didn't know it was a 2 hour long appt and I had to reschedule. It's 9am so should be over by 11 am and then we're heading to the cabin. Charlie is driving because my eyes will have been dilated. Nope I'm not driving this time. It's supposed to be sunny and bright plus a long drive.

[LBLNJ0668]

Hi Yes. I went to my brother again today, This tie I idd the feeding tube thismorning my one nephew and brother removed.  I am going there again tomorrow to have the mdo it one more time.  I tod them I need me ttime saturday.   Hopefully that happens.  I told my brother it will be a good 3-4 weeks moniumum before I get there once I have my surgery So the company with the infusion sent him a scale the nurse requested it so they can keep track.  He weight beofre all this happened 168.  He is now 148.5 n I am nervous. I got him to drink an ensure.  He said he will drink 3 a day for me on saturday tomorrow he will be getting blood.  so he will be out of the house most of the day I am bringing him  split pea soup to him tomorrow he said he'll try it again. I will make hime mashpotatoes he said he will try that again.   I think he gets th picture he needs to eat to gain weight to get off of the  feeding tube. he is actually listening to me.  he never did before .      Makes me happy.   Oh I idnt log on right away I needed down time.  Now I am going to bed.   nightie night