little update and some pics

haven't posted here in awhile because i forgot my password LOL.

my little grandson was born at home with midwife April 20. he was 8.5 lbs and is gorgeous. he is named Noah.

my brother passed away the next day.

my youngest child and son graduated 12 yrs of homeschooling June 1. we had a big party and graduation for him. i am so proud of him! he is working at walmart full time in town in the recieving area to build muscles and body strength, as he plans on enlisting in military this fall. i want him to be successful and get on with adult life, but being a momma i do worry. and i pray alot.

DH has been on home hemo since oct 28, 2011. it went almost perfect for 7 months but his epo dose was too low and he was getting no venofer. after mentioning this to nurse many times, his HB was so low he needed to go to hospital for venofer.
he didn't want to spend 2 hrs at hospital to have this done, we were told they were not approved to this at home, nurse said she could do it at the clinic in 10 mins.

because of exhaustion and 2 deaths in the family, i was not on guard as usual. i did ask her about the safety of doing this straight into his fistula, she assured me this was clinic practice and OK.

well, fast forward 2 venofer treatments directly into fistula, and fistula clotted right up. we were told to wait weekend. (don't do this). ultrasound by 2 surgeons showed venofer had basically burnt a hole in the fistula and clotted it all off.
emergency surgery to place a huge graft and new permacath.
3 weeks later graft (not used yet) badly infected and DH has sepsis. more surgery.
we're up to 5 additional surgeries at this point for the quick venofer run.
these are all day/night marathons at hospital, then back home and doing home hemo which is being difficult.

right after that DH labs show HB at 6.6. now he needs blood transfusion. another marathon at hospital all night, after hemo at home thats being difficult.

this kicks him off transplant list until they can text for new PRA. Thank God that came back fine and no change.

however, he was hospitalized again to treat sepsis, for 2 days, then had to go in center for 3 weeks for same. more driving. (clinic 35 miles each way).
heat wave we were having was in 100's, no car a/c. struggles to keep everyone cool enough at home with one window a/c and a very old house.

to make things more fun, the day he was discharged from hospital, transplant nurse says there is kidney he could have had but can't due to being on hold for infection.

this is 2nd kidney offer since listed Dec 2011.

the hospital we were at was horrible and many mistakes and i finally called administrator, which fixed things.

when the fistula first went out, both nephs and the surgeon called us at home to say venofer should never have been given directly in fistula, and thi sis what ruined it.

later all 3 of them back pedaled on this, denying it.

ok, so here we are. he is done at clinic and back to HH, surgeon is confident he will get transplant soon so is leaving permacath for use. rather than more surgery to do a new fistula and wait.

he is starting several weeks of venofer next week. once a week.
we do not blame his nurse, we still care for her much and she was only doing what doc told her to. doc says new protocol is pushing venofer in 2 mins, directly into fistula. we will not allow that, which we can't now anyway, but i urge any of you not to do so either.

grandson is now 3 months old. also got to spend day with 4 yr old grandson.

son is still working and doing well, been good for him.

i am staying at other place a mile away because i collapsed. i did get to the free clinic last month and though it was a long 5 hrs there, got my diabetic meds.

i have applied for medical for myself so i can get some of these ailments treated before my body just shuts down. no word yet.
it appears i now have other medical issues from the last 2.5 yrs of 24/7 caregiving.
much like an old car thats been run to hell with no maintenance.
not being a hypo, i usually ignored it until i couldn't.

is life fun yet?

my brother who had no wife or kids, left his substantial assets to us, his 4 sisters.
his intention was to help his nieces and nephews finish college and prepare for their own children (his grand-nieces and nephews).
my mother and her 7th husband (25 yrs her junior) promptly stole that inheritance and have spent it all.

oh well. i would have nothing better than to have my brother still alive and well.

not really sure what the future holds. i did pick up my 12 year AA token in march!

right now i am enjoying the peace and quiet here. its been very hard to remember who i was before all this. and to re claim a little of that.

here is some pics, and thank you for being here!