Turn for the worse

[karenkay]

Hey everyone,
I haven’t been able to post in a while, but lots is going on.
My dad is in the ICU in critical care right now. Last night (12th), my husband and I went up to see him. he had not been going to therapy and I had noticed a decline in the previous 2-3 days. I thought he was just depressed about Kathy leaving. He had been doing sooo great while she was here and recovering from the UTI and everything.
When we showed up last night about 4:30 pm, he was absolutely out of it. He was incontinent of his bowels which was extreme diarreah, and he had a fever of 99.4 (high for him). I had them call an ambulance immediately.
By the time we got to the ER, his fever was 101.4.
They took tests of every kind and when the ICU doc came, she said she didn’t know if he would make it through the night. Fortunately, he stabilized and we got home around 4:30 am.
They took good care of him, and so far his test results indicate pnemonia and an infection in his intestines. b.cill something or other. Apparently, the antibiotics he was on which were very strong, killed his good bacteria and his compromised immune system couldn’t handle the influx of bad bacteria. How is that for medical lingo?? His WBC was 46. It was only 11 less than a week ago. His blasts, which had been 18% were down to 6% (this is all peripheral blood) He also has renal problems (I don’t know if failure is the appropriate term to use right now).
Poor guy, he is so tired and weak. I am letting them treat the infection, of course, but I have him as DNR and no pressors. It was a very hard decision to make, but I know that I am exhausted helping him for the past 4 months. I am a healthy strong woman and I can continue. He has been doing this for over a year now. I think “I’m” tired, he’s the one going through all of it!!! It is very humbling to see.
Tonite, they had to restrain his hands when I left, it is so cruel, I hate it, but he was agitated and confused and trying to pull his catheter (sp) out. I asked them to re assess the situation and remove them as soon as possible.
I also let my sister go visit him (he wanted to see her). She lives close by, but has not been involved (no need to get into the dysfunction that is my family history now) and undependable, in case you were wondering where she has been in all of this. I would have kept her out of it entirely, except my dad wanted to see her. He also asked to see my mom, whom he has been divorced from for over 20 years (very bitter). She wants to see him too and when I told her his request she said she wanted to talk to me about seeing him, but didn’t know how to approach the subject with me. She didn’t want to burden me with the pressure of taking her, bless her heart. He wants to make his peace. I am worried about my mom because I went by her house today and her blood pressure was sky high (remember she had a stroke in Aug.). I think she is nervous about this and I told her by the pure virtue that they both WANT to make peace, it is there, she doesn’t have to go see him.
They have officially changed his diagnosis to AML, he no longer has MDS, they say.
Guys and gals, my friends in this nightmare, please pray for my father’s comfort and peace. He has been on a long bumpy road and I feel it is coming to its end.
God bless all of us,
karenk

[sugarwhale]

Dear Karen,
You are going through some very rough things, and I’m so very sorry. You are a strong, courageous person; you have to be! Please know that we are thinking of you and hoping your dad pulls through. May you have peace, comfort and hope. We are thinking of you in a very special way.
~~~ Janet

[CarolineG]

Karenk

I wonder if the ‘b cill’ you described is actually ‘C-Diff’ Colostridium Difficile. That is an intestinal infection which is quite often brought on by the use of certain antibiotics. The patient presents in hospital with watery, bloody diarrhea, high fever, delerium, incontintinence from both ends obviously and the inability to walk. That is my Dad’s original reason for being in the hospital right now. They treat it with a mixture of several types of antibiotics and IV fluids. The most important being Flagyl. My Dad is on 5 or 6 kinds of drugs. If that is your Dad’s infection, it is a nasty one but if they catch it in time, it is treatable. Not everyone is suseptible to having this infection blow up even though we all carry the C-Diff Bacteria in us. Is he in isolation and do you need to wear a gown and gloves to go in and see him?

As for the rest of what is going on, my heart really goes out to you. The family politics surrounding a terminally ill patient can be almost as devastating as the illness itself. I am speaking from current experience. Dad is oblivious to all of the nonsense that is going on around him, Thank God.

I will be thinking about you, Karen and I keep all of you in my prayers.

Caroline

[Ensnee]

Karen, this is so sad. I’m very sorry for everything that is happening. There is an elderly man in with Hans right now, who is virtually paralyzed from taking some drug at the previous hospital. He cannot walk or even feed himself. He needs help toileting in bed, and has had accidents. To top it all off, NOBODY from his family has called since he was brought in on Sunday. He had a lot of pain in his leg last night while I was visiting, and I had to tell the nurses. They were shorthanded and having a terrible day. It reminded me of my own dad while he was dying. Why must people come to this end? I had a lot of trouble sleeping last night because of all this…I perfectly understand your leaving your sister out of this. Mine has been completely silent and non-supportive through our struggles. She is finally helping out with our mother, who is in decline.

My warmest hugs to you, Karen.

Esme

[bkwits22]

Hello Karen,

I have strong empathy for what you are going through right now. My husband, Joe, was in the hospital for two months. He had kidney failure (requiring dialysis), infections, an intestinal blockage requiring emergency surgery,and finally pneumonia. He was able to make most decisions for himself, but he still needed an advocate. The biggest problem was that he had too many doctors giving orders.

I can also relate to the family problems that you are experiencing. My thoughts and prayers are going out to you. Barbara

[DonUK]

Karen, just said a prayer for you & your family.

Try and be as strong as you can.

Take care,
Don

[karenkay]

Thank you everyone, for sharing my pain with me. It lightens my heavy heart and I value the compassion more than words can say.
Caroline, yes you are right on the money with his infection. I was just extrememly tired when I posted last night and couldn’t remember anything!! It is a very nasty infection to say the least.
I am going to get dressed and head over there with my mom today. Pray all goes well for them. I am so proud of them for wanting to make their peace.
I haven’t talked to the doctor yet today, I’ll do that when I get there.
Thank you again everyone for your thoughts and prayers.
God bless all of us,
karenk

[Jimbob]

Karen,
We do share in the joy when we here that things go right. I really do wish that there was a way we could actually relieve the pain you are now going through when things are bad by sharing it. Know that there are many of us who do feel your pain and are praying for you and your father.
Jim

[patti]

Karen,

I’ve been thinking about you all day and just got on to find out if you were able to see the new doctor today. I am so sorry to hear about all of this new stuff. What a heartache. It sounds like you’ve made some wise decisions regarding your dad and your family. Sometimes illness brings out both the best and the worst in people. Seems like you’ve seen some of both. Please keep us posted. We care.

Hang in there.

Patti

[karenkay]

Just got back from taking my mom to see my dad. They hadn’t seen eachother in over 20 years and they had a very good visit. They just held hands for about 15 minutes and said “the hatchet is buried” so to speak. I am very happy for both of them.
They moved my dad out of ICU to the medical floor and he really did look about 100 times better today. I am happy for him. His kidney function is improving and he seems to be responding to the antibiotics.
Unfortunately, he puuled on his catheter when they let him be unrestrained and his bag of urine is full of blood. It is starting to clear now, but this all means he has to be restrained when he is not being directly supervised.
The doctors have been wonderful to me and him. They are working very hard to get him into the ECU/hospice after this hospital stay. It is for the best. They will still transfuse him and treat infections. However, no matter where he is, his doctors aren’t recommnding treatment for the AML, so he might as well be in hospice where he can be made comfortable and treated with compassion and dignity.
Of course, I wasn’t able to go see the “new” doctor, but things work out for a reason and I think he is getting very good care. Patti, thank you for remembering about that. I’m touched.
I am continually amazed at the ups and downs this man has endured.
will keep you all posted over the next couple of days.
God bless all of us!!!
karenk

[Luke and Margaret]

Karen
I’m so glad peace was made. What your family does now, will be with them forever.

I just have one tiny note of caution, from bitter experience over the last few days. Dysfunctional families seem to get way worse during this kind of crisis. Take really good care of you, and focus on what matters in your own relationship with your dad. Sometimes caregivers get trampled once the crisis deepens, and it is critical to your own well being not to invest so much that, once the ups and downs of wacky relationships start to reassert themselves, you don’t end up feeling needessly hurt.

Feel at peace that you did what you needed to do for your own reasons, not anyone else’s. It will see you through in the days ahead.

I know the burden of making the DNR decision. It is very difficult. My thoughts and prayers are with you.
M

[VIOLA]

Karen,

I will think about you and Dad and I will pray!

[shirlsgirl]

Hi Karen,

Thinking of you and your Dad…glad to hear all went well with visit with Mom.. Will continue to send positive thoughts and prayers your way.

Take care,

Jody

[CarolineG]

Karenk,

Margaret is right. I have seen that happen in my own family over the past few months. Remember, people are not your judges. You have to do what you feel is right. You have been doing a wonderful job with your Dad. He is lucky to have you as his advocate.

Blessings,
Caroline

[karenkay]

Very good words of caution regarding the family situation. I am very happy for my mom and dad making peace. That part is going to be fine. The sister part may not go so smoothly, but I will protect myself and my dad to the best of my ability. I hope she keeps her visits short and I just avoid heavy conversation with her. I don’t tell her all the medical ins and outs and have instructed the medical staff to do the same.
I will continue to do what is right in what my church teaches me and my heart tells me. The rest will have to go to the wayside.
Thank you all for the encouragement and insight. It truly helps me.
Keep the prayers coming, they really work!!
God bless,
Karenk

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