Jpouch sis here ... Stopped in to check on Dennis (he and Joan are always on my mind) and thought I would drop a note to say hello and give you the scoop.

Mom is 83 and 2 weeks ago this Wed told my husband she was having bleeding. He checked to confirm and then called me to see what he should do. I said bleeding @ 83? ER!

They did 2 colonoscopies, 1 endoscopy and 1 nuclear imaging test. No bleeding would show.
She had a severe bleedout where they called for the family, thinking this was it.
Surgeon said she was going in to remove the colon to try to save her. That was Saturday.

She was doing well for a few days, getting better and stronger it seemed and then started declining rapidly. She went from sitting up in bed visiting with us to laying there unable to communicate at all, with a grey skin tone and looked like death was imminent. My brother who has been through it tried telling th enurse he thought infection - because he recognised the enlarged stomach area etc. from his ordeal but the nurse just turned and walked away and would not even listen.

During this time she had a heart attack which threw her heart rate off. Her blood pressure got down to about 69/43 and it was scary.

Doc came in and said we had to make a choice. MRI showed free air in the abdomen, and they imaging guy thought there were three leaks in the surgery site area. They could either drug her well to keep her comfortable and let her die, which he forecasted would be in 2-7 days or he could go back in to see what was up - The problem being she was so weak, her heart was so irratic, she had the heart attack, and her blood pressure was so low he didn't know if she would even make it to the operating room. We told him we had no other choice but to have him try. He said it put him in a precarious position because he did not think she had any chance of making it through it.

They headed to OR and we as a family headed to prayer.

She came through ... 2 hrs later they were done and he came out to say her heart rate had leveled out, her blood pressure had come up and she did extremely well. When they went in they found her abdomen full of stool - it had all come loose and was a mess. They cleaned it all out as best they could, removed the stump of the colon they had left in before and put in an Ileo.

This was Friday night and we are now at Monday - they have removed the ventilator today and she is starting to wake some but is in a great deal of pain. They were not giving her pain meds unless she asked (EXCUSE ME???) until I saw that look of pain when visiting her - got the nurse and had her give her some and then my sis talked to the doc and they upped the pain meds for her. As much as she has been thru at her age, they had best keep her as pain free as possible or I am going to come unglued.

They left her wide open to heal from inside out - so I am sure there is a lot of pain with it - My brother has been through all of this and knows the horrors of it. Thank God he deals with Cleveland now so he is in good hands.

So, that is where we are - Prayers are welcome, and requested for her.

JPouch Sis

What can I say? Yikes!!

Mom definitely has an angel on her shoulder.

Jan

Wow! I can't believe you're now going through this with your mom after going through it with your brother. Unbelievable.

I'm sending heavy duty vibes up your way. I was wondering how you all were doing. How cosmic that both you and Joan show up here in the same week.

I hope your mom continues to improve.

kathy

Yes, it is amazing that she came through - someone definitely looking out for her. She is up there in age, and I realize we are never guaranteed another day, at any age - but we just could not see her go if something could possibly be done.

Now my concern is the level of care she is receiving. Again today, she was found in severe pain. This time by the night nurse coming on duty. She found mom crying she was in such bad pain - after I had just spoken to the nurse prior about my concerns and they supposedly "fixed" the problem ...

So, I went in and spoke to the House Supervisor tonight, telling of my concerns and tomorrow the patient advocate is to call me to work this problem through. I will also be speaking to the director of nursing tomorrow to ask that the nurse I am upset with be removed from mom's care entirely... I find this inexcusable.

We live in a small town and this hospital only has 48 beds - 5 of which are in CCU where mom is. There are 3 nurses and an aide on duty all of the time - you would think the level of care would be good...?

Anyways - I am rambling - tired - and stressed. Time to get some shuteye and deal with this in the morning.

Thanks for the well wishes, kathy!
You all take care.

I am glad to hear that your mom is improving. I know what it's like to be in pain and people not believe you when you say that something is wrong.

After my first surgery to have my colon removed I ended up having two emergency surgeries for infection, abesses and a twisted bowel. NOT FUN

It's great that you and your siblings are there and able to speak and intercede on behalf of your mom.

Hope things continue to improve quickly for her.

Oh man......... So sorry to hear this! Your Mom seems like such a wonderful caring person. It's horrible that she's not getting treatment. Your whole family has been thru quite enough!

And, how is your brother doing? I'm way behind. Did he have his second surgery? Everything go well?

You and your family are often in our thoughts too. Sending good vibes to you all and special thoughts to your Mom!!!!

Thanks, Christine

Joan - Bro had his second surgery. Remzi was able to reconstruct a jpouch and ditch what was left of the old one that would have never functioned. Now in October he is planning to go back to Cleveland for #3 and have the take down.

He had a real rough time this surgery - body and mind have been through so much already that it made pulling out of it tough to do but he is getting there. He is looking forward to getting the other surgery done so he can get back to having a life. My prayer is it goes well and works this time.

Was so sorry to read Dennis is still going through so much - enough is enough is enough already. You two are always in my thoughts and prayers.

Thanks for the well wishes for mom. Got a call a few ago that they were doing an xray because they think she may have pneumonia - and they think they may need to put the ventilator back in ... so I am going to go get my butt in gear and get up there.

You all have a good one.

Congestive heart failure - no pneumonia.
They are not going to put ventilator back in.

Last night's visit had her kidding with us and her color was good, which was so good to see.

white count is up a bit high (25) - dr said he had some concern but was not sure if it was from what she had already been thru or if another infection is coming on ... fingers crossed on that one

...one day at a time...

Afraid to ask what's up but you are in my thoughts big time. Update if you get a chance. Love and prayers your way.

Sorry ... I feel as though we have lost a month+ here ...

Update: (will leave out the in between details)

It has been a roller coaster to say the least but mom is now in a nursing home to continue recovery.

She is on a feeding tube and a wound vac, so our choices of facilities was nil.

She is in a place that I loathe, and in another county. The conditions in my opinion are horrible.

As soon as the wound vac can come off, we can move her to the nursing home by us that my dad was in and it is homey, clean and they receive awesome care there (all the things the current one does not offer). We love the people at the one here by us, and they remember mom well, from when she was with dad visiting daily - so they are looking forward to her coming there.


As far as prognosis - Dr's have no clue. They are totally amazed she has made it this far.

Her mind does not seem intact - most of the time nothing she says makes sense.
She has pneumonia now but not bad they said. Runs a fever here and there.
Complains of her chest being tight a lot.

... Dr's say we should know more in about 30 days ...

Sorry about all of this. Hope your brother is at least doing OK with his surgery.

You can have your mom put on the wait list for other SNFs in your area when a bed becomes available. It is possible that she may never come down to the level of custodial care, although most nursing homes should be able to handle tube feedings.

Jan

Thanks, Jan

Bro goes to Cleveland on the 14th of Oct and has surgery on the 18th. Our hope is he sails through this one and that it is the last. I am sure all of this with mom has drained him alot, and we keep telling him not to push himself because his body needs to be ready for what he has to handle next month but he is big bro and a loving son and has pushed himself to the max for mom and the rest of us through all of this.

Yes, once the wound vac is removed we can have her moved to the place we all like... They said that will be 2-3 weeks ... so hopefully ...

The way she looked today when I went up to see her though, I am really wondering if she will make it that long ... she responded a bit to my toddler (has always been her lil girl) ... smiled and called her sweetie but other than that she was quite unresponsive today ... BUT! She has amazed us all prior, so who knows

she talks like she thinks she doesn't have long ... but not sure if that is her instinct or her fears talking? I feel at a loss most of the time. And most of the time she is not rational ... it is rare that she makes much sense.

Only God knows and only time will tell us

Blessings

I think that the toughest thing about watching a loved one in this sort of situation is the loss of cognition and the ability to interact with each other. How do you know for sure what she wants or feels when her speech is full of nonsense? It is so difficult to be making decisions in this case, because you really don't know if her time is really up, or if she will rally and come back full force.

I have been surprised many times by such folks. People who are not ready to give up, don't, regardless of what the doctors say. So, you just do what you can, take care of her, keep her comfortable, and keep reminding her she is loved! How blessed she is to have such a caring family...

Regards, Jan

So true, Jan. She had her children by her side every day and every step of the way and even when she seemed like nothing made sense she knew who we all were and told us she loved us too


Update: Mom passed away Sept 25 - 6:15 am. Monday night I received a call from the nursing home doctor - he was concerned about her condition and said he had ordered bloodtests and an xray. 2 hrs later a nurse called from there saying in 10 minutes they would have her at the ER as she had went unresponsive. I told them we would meet her there.

She came to enough to tell us she loved each of us as we came in to see her - and to ask God for faith and strength and then went incoherant almost totally. The ER doctor said she had aspiration pneumonia and he felt it was going to take her, he just didn't know how soon.

They took her to a room about 2 am, she had another heart attack and then an hour or so later drew her last breath with my brother sis and I by her side. Very peaceful and in her sleep as she had wished for.

While I miss her terribly already - I am so glad to see her not in pain any longer and now she is with daddy as she wanted to be so badly since he left us... so for her I am happy, for us I am sad.

I am very happy though that my husband kids and I got to enjoy dad and mom in our home the last 2 yrs of dads life and the last 5 years of moms life. These will be treasured memories forever.

Oh had to share a weird coincidence we noted.

Mom was born on the 25th and died on the 25th.
Mom was born on a Tuesday and died on a Tuesday ... Cool coincidence in the scheme of things.
She was exactly to the day 83.5 yrs old
and the day before she got sick was outdoors with me on the deck sharing thoughts, telling me she would help me potty train my little one and then headed to her flowerbeds to tend to them ... So she had a good life, healthy life, until the last 6 weeks.