need everyone's prayers so much!!

[misothere]

Dad & 1 sis' & I visited John around 11:00AM & it was hard seeing him "so-o" frustrated & ANGRY!! They had to tie BOTH arms down 'cuz he pulled nose feeding tube out 3 times already today!

He still has trache, & was trying so-o hard to talk & probably getting frustrated by us trying to read his lips & his BP escalated. So we just kept trying to tell him where he was, & that he needed tubes "right now" to get better & Dr's would take them out as he got stronger so just rest.

We did read lips correctly on 4 things, 'cuz he nodded as best he could yes. He mouthed "I'm so pissed off" & a "swear". As well as "water". since he tried talking so much his mouth was dry, so sis' did swab thing & they suctioned his mouth too.

I read his lips saying his "fiance's name"...... so I said she'll be up after work & she's been here EVERY day. He mouthed "she's right there" & pointed like she was really there?? (Not sure if that's "normal")??

I know he's on morphine (but a low dose), so I explained that she's ALWAYS here in "spirit" & she'll be up after work.

He seemed to get more pissed/anxious & was trying harder to move to sit up & pull nose tube out again.

By the time we left he was crying & they gave him more adavan to calm him, BUT. they needed to change amputation dressings soon too & usually give him more to do that anyway.

June & Kat (sorry I keep forgetting to check my PM's, so I deleted a bunch & will PM ya' both more).

[june72]

Many prayers for you all! Its a good sign that he is trying to talk and that he is getting frusturated. He is really showing emotions! Will be praying that God will provide him some way to talk! Also that the Lord will help him to cope and understand what is goin on.

Sent you email, but it came back to me.

[misothere]

One sis' of mine saw John today & she asked if he'd like her to talk to a social worker about ways he can communicate. He nodded & she called & had to leave a voice mail. We're all thinking John's fiance might not be to keen on the idea of John communicating & being able to make his own medical decisions.

So my sis' called John's fiance & told her that her 6 yr old son was asking when uncle John was getting out of the hospital ('cuz he's been drawing pictures for him right along).

Then sis' told her 'cuz of that she needed advice & put a call in to the social worker (that said we all could talk to her on 11/8 family meeting).

After fiance heard my sister's comments about wishing to speak to social worker, fiance said "one of John's machines is beeping", I gotta' let you go! (John's machines have been beeping for over 2 months for empty medication bags etc...) Plus it's not like fiance was a nurse and had to "change the bag or attend to the machine herself. So, in other words she cut the conversation short 'cuz she probably didn't like the thought of any family members talking to a social worker (especially about trying to get John to communicate, which my sis' will ask).

June - not sure why you got the email back you sent to me - 'cuz I've been getting emails all day, so if you want to, just try again.

Friday will probably be the next day I visit John with dad & my other sis', so I'll update about on how it was after.

If my other sis' gets reply back from social worker before then - I may update about just that before our visit.

THANK EVERYONE FOR YOUR CONTINUED PRAYERS FOR JOHN & OUR FAMILY. HOPE YOUR ALL GETTING INTO THE HOLIDAY SPIRIT - I'VE STARTED TO FINALLY!

[katlnhats]

Hi,
Our prayers are still with you and your family, and keep at the social worker, as it's in Johns best interests. That's the important thing. I'll answer your email soon, as the holiday spirit here is mostly tired! We're getting things done..........slowly. Hang in there, you're doing the right thing...

M

[june72]

He needs some way of communicating and I pray that when he gets it that all works out for the best for him. He is still very much in my prayers as well as Doreen and the rest of youns!

[misothere]

Dad, me & 1 sis' were going to see John today, but last night I remembered Sylvie had 1/2 day of school & no bus & there would've been no time to go to hospital & be at school for 11:30. Also if I didn't remember Sylvie would NOT have been picked up!! School would've called dad at home, then his cell (which he forgot last time), then they would've called "John" & then my sis' that would've been at hospital with dad! That really would've made Sylvie feel abandoned, huh!! Gotta tell dad to take John off school emergency call list!!

Plus dad promised to take her to see movie & lately we're trying to "not forget her & keep promises". I planned on doing laundry at dad's & meeting at cinema at 1:30 for movie. I put wash in & 5 min. later hot water tank was "spweing water everywhere"! Dad left his cell at home & my hubby's wasn't on, so I got info on how to shut water off from bro-in-law & swept water out garage.

i knew he planned on buying tickets early, & I got to cinema 20 min. before our planned time to see if he wanted to cancel. He said as long as the water is shut off - it's fine til' we got back ('cuz he DID already buy the tickets). We went & Sylvie & both of loved the movie!

When we got back & drained the heater, he wanted to "move it outta' the way" - so if somebody could help him pick one up & replace it tomorrow that would be done.

He's stressed & accidently cut pipe that leads cold water to house & ran to store to buy parts to get water back running. I knew he's come back with a hot water heater & try replacing it alone, so I called my husband. Then I called same bro-in-law back & left voice mail.

Dad DID come back with water heater & my husband arrived 5 min. later & bro-in-law about 15 min. later.

Dad ran out to get a forgotten part. (Good thing he forgot his cell this time, 'cuz they told me to call him - 'cuz they found part they needed & he could just come back). When he returned - they had the job almost done & he was quite appreciative!

Doreen had today off & she probably visited a long while with John. She's supposed to take Sylvie shopping tomorrow, so dad said he'd go to hospital then & I'll told him I'd go too!

But she hasn't called dad at all today, so we're hoping she doesn't forget her plans with Sylvie.

[misothere]

Dad & I went to visit John yesterday & he wasn't as "responsive", but still tried pulling trache out & had just been "worked on" for 2 hours & was tired.

John did smile to me & dad & lightly squeezed dad's hand & made dad's day!

Prior visit & this one too, John was able to point with BOTH hands (not to mention able to move hands enough to pull tubes etc. out so they're tied down).

So ...I asked nurse about communication board & she was going to check with occupational rehab for one. When I told that to John's Fiance, she got defensive saying that she "already asked 6 nurses & they couldn't just leave thier patients to FIND one".

Prior to that she said she asked "5" nurses & they said they couldn't find them. ANY HOSPITAL THAT HAS AN OCCUPATIONAL REHAB - "WILL" HAVE THEM!

Fiance said - "you don't understand, the nursed just can't up & leave the patients to find them".

I DO UNDERSTAND THAT, BUT I ALSO UNDERSTAND THEY COULD "CALL THE OCCUPATIONAL THERAPY DEPT. & REQUEST ONE TOO"!!

Hopefully a board is found & John Chooses to USE it & take back control of his own medical decisions real soon!

[galena]

The hospital should have an employee who acts as a patient advocate. If you feel his needs aren't being met properly, you can discuss the problem with them.

[june72]

Bless his heart! Prayin that God will send his board his way! Hang in there and be strong, I know that things will all work out soon!

[skyangel]

I hope everything works out and he gets the board real soon.

[katlnhats]

I hope he gets the board very soon, as it sounds like he can surely communicate his own wishes with it. They do have patient advocates in the hospitals, good idea! I'd forgotten about that.
Prayers are still with you...
Kat

[june72]

Lisa is there any updates? Still praying!

[misothere]

One sis' Patty called with latest update today. She visited John yesterday & he was sitting up in bed. Patty forgot to ask if they found a communication board 'cuz they were so busy. She did bring a clipboard & paper & pen & John's grip wasn't good enough to write legibly, but he was trying really hard & could write an "X".

The nurses said fiance' Doreen called "5" times & they asked Patty to call her with update 'cuz other patients are more critical!! That's bad for them - but good for John since he used to be "the most" critical, ya' know!!

Patty said John's "stepped down" from tube cover on Trache & now has a "cup" over it 'cuz he's breathing mostly on his own. Once he doesn't need Trache John will be able to speak & make his own medical decisions!


Patty did call Doreen & said the nurses couldn't talk to her 'cuz they were extremely busy with other's today.
Doreen gave Patty the impression that John "could possibly" be moved to a rehab BEFORE XMAS!!

John's fiance Doreen & I are both stubborn & do have differences of opinions, but for everyone's sake we do start talking again. She even wanted me to go with her this past Sunday to check out a rehab place & I had prior plans.

Patty (was legal guardian & had medical proxy of our other brother Dave who died of lung cancer this past June). Patty's had experience in "finding the most suitable place that insurance will allow" & she may go with Doreen to check rehabs over the week between xmas & new years, IF they haven't moved John already.

My youngest sis' Michele & dad are visiting John tomorrow, but my unemployment check is due & frankly I have to go xmas shopping & wrap & won't be going with them. We are having our family xmas party "this Saturday" & need to get stuff done!

I'LL GET UPDATED AFTER DAD & MICHELE SEE JOHN & UPDATE YOU ALL TOO!!

I'd really like to thank everyone for your prayers for John & concern for our family! You all are "truly part of John's MIRACLE" (remember we were told on 11/8 that John had less than zero % chance of survival). THANK YOU SO MUCH FOR PRAYING SO MUCH FOR HIM!!

Tonight it will be John's 70th night in the SICU & he's come a long way!! - He still has a long road ahead getting used to both leg amputations, so prayers still welcome with open arms!

[june72]

Thanks for the updates! Sounds like his miracle is coming right along! Still praying for him! For youns all!

[katlnhats]

Hi Lisa,
Thanks for all the updates Your brother is a miracle, though he's got a ways to go, he's well on his way.
God Bless...
Hugs,
Marilyn