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Back in the hospital

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

We are back in the hospital---Salem Hospital this time, not OHSU. I'm breaking in a new set of nurses and doctors haha.

David had an MRI on Thursday. He's not doing very good..... It takes everything I have to get him in and out of a car and to and from an appointment. I have a wheelchair but the problem is the car. Anyway, I told the MRI staff that they would need a lift team to get him in and out of the MRI. No prob they say....they see people like David all the time. After about an hour, they came and got me out of the lobby. David had a fall. He had told them he needed to use the bathroom and they got him out of the wheelchair and stood him up in front of the urinal... Then they went out and shut the door! They told me that they were respecting his privacy. It was all male nurses so it wasn't like David was embarrassed going to the bathroom in front of a cute little blond his age. I was as nice as possible but I asked them why they thought he could be left alone after they saw what it took to get him in the MRI machine. They just said they thought he'd be ok. I still can't believe that they left him alone.

My husband was furious when I told him and wanted me to file a complaint but I just didn't want to go there. I'd rather just be mad for a while, I guess.

So on Friday I noticed a red spot on David's eyebrow and I thought it was from the fall. On Saturday Christy came over and looked at it and she saw blisters in his eyebrow hairs. She thought it looked like shingles so she googled it and found out that chemo patients are more suspectible to shingles. I called OHSU and they told me to take him to ER. So sure enough, it's shingles. David was in terrible agonizing pain from it. But because we caught it fast, it didn't get into his actual eye. They said in the eye is considered a medical emergency. But it's bad enough just being around the eye. The whole side of his face swelled up and his eye is swollen shut and nasty stuff is oozing out. It's been really, really bad.

If that wasn't enough, Davis also had a lump between his....male part and his butt. It was really painful too. They aspirated it in ER---agony--- and drained out the nastiest, most foulest crap.....and said that he has an abscess. So they enlarged the hole and put in a drain. The next day it was leaking more pus so they really opened it up and now he has a wound that will require special care when we go home. I'll have to pack it like I did when he had that huge abscess and hole back in January when he had cellulitis.

On iop of all this, his oncology team strongly recommended that I talk to David about a DNR/DNI order, and suggested ( again) that I should call hospice. I cried so much yesterday that my eyes were almost all the way swollen shut. My husband and family came to the hospital... It was so hard and so awful.

So.....David wasn't really awake enough yesterday to have the DNR talk so my husband told me to just pick a good time. We decided not to make some huge emotional thing out of it, and to just say that we already knew what he wanted--- we just wanted to make sure we were on the same page as David. So after everyone went home, David was more alert and awake, and I talked to him. To my surprise, he said that he did NOT want a DNR or a DNI order. He wants everything done to keep him alive. Not what I thought he'd say and not what I would want. But it's his life and his choice and I'm not a monster and will not try to talk him out of any decisions that he makes. it's a good thing that I asked because that is not what I thought he'd want. So I won't be calling hospice either.

After that talk, David perked up and asked for a turkey sandwich. He ate every bite of it. Used the urinal and watched some TV with me. I climbed right up on his hospital bed and held him in my arms and we watched The Office and dozed a little. A very sweet special time.

This am the infectious disease dr said that he's cleared David to go home tomorrrow. Yesterday we thought we'd still be here on Saturday. My daughter is getting married on Saturday. So this is really great news. We still need to be released by the hospitality doctor though, and David's heart rate is still high so we may not get to leave tomorrow--- but regardless, David is much improved and things are definitely looking up. Still a rollercoasterof a ride...

While I was in the hospital with David, my sister and some other family and friends went to my house and painted my kitchen and shampooed my carpets, washed my windows and blinds, and cleaned and scrubbed my whole house. We have a lot of family flying in for the wedding, and my sister knew how stressed I was about people coming to see David and having my house so messy. Isn't that a wonderful thing that they did for me?

So I know that David is still going downhill but I feel like we have won a little reprieve here. I am living one day at a time, and this day is a good one.

So....that's where we are at this moment in time. I hope all of you are having great moments and great days and are doing well and winning your battles. I think about you guys here on CSN all the time, and I'm praying for you.

Love and blessings, always,
Cindy in Salem, Oregon

BenLenBo's picture
BenLenBo
Posts: 143
Joined: Feb 2012

Cindy,
I love David's fight spirit, he is willing to fight for his life and do things on his own
terms. KUDO's!!! I understand why he didn't want a DNR or DNI order, it would be like giving
up and this cancer winning. Also, HOSPICE, please- a great organization, but its like dome and gloom for the patient. I remember when my friend called, to tell me her doctor put orders in for
Hospice to visit - it was the most horrible day in my life, and hers. Hope just walked out the door and sadness entered. She lived three weeks - functional everyday, we laughed, hugged, told stories, shared private moments and met her needs. ICE CREAM - lots of it and flavor - who cares it you get
fat:o)
On the other hand, I cried my eyes out, just wanting to be there for you during this time. It's horrible that medical professionals are so blindsided, that patients get hurt in there care, because
the aren't thinking. Chances are this will never be reported in David's chart, and there will be
nothing to stand on it you do file a grievance against the hospital. It's really hard to do unless
you have a video, or recorded documentation. You were all lucky, he was not hurt more. Bless his heart, as if he isn't going through enough. I did not know that radiation makes them more acceptable to shingles- and yes, by the eye and or in the eye is extremely painful - neighbor had that a few years ago, nasty. How was that treated? Just curious!
I love how your family came and overhauled your home, preparing for your daughter wedding on
saturday. July 1st is my 34 wedding anniversary, I will always share that day with your daughter and remember you always. Enjoy, every blessed moment with your family, friends and loved ones, as you
all celebrated you daughter's marriage. May the sunshine bright, the flowers smell fragrant, and there is lots of laughter in the air.

Still praying!

(((hugs)))

Carol

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you for your response, Carol.

We got the MRI results back today. David has had a bleed in his brain. It might not be really recent. OHSU is not sure. They looked at a previous MRI and thought maybe it might have shown on that MRI too. I didn't get to talk to OHSU and only had a voicemail for info so I will be calling back for more info tomorrow. This means no more Avastin for David. But.....overall, the dr said his MRI looks better. Not just stable---but better!!! This is was much much better news than I expected!

David however was upset about the bleed and no more Avastin. I hope that as the news sinks in about the MRI being better, he will feel a little better. He's still very sick, still in a lot of pain, still very very weak....but hopefully we are going forward.

They are giving David anti-viral medicine via IV for the shingles. It was to stop the spread....but the shingles that he does have will have to run their course. Thank God we treated it early and it didn't get in his eye.

I hope you and Ben and your family are having a wonderful summer!

Love and blessings,
Cindy

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you for your response, Carol.

We got the MRI results back today. David has had a bleed in his brain. It might not be really recent. OHSU is not sure. They looked at a previous MRI and thought maybe it might have shown on that MRI too. I didn't get to talk to OHSU and only had a voicemail for info so I will be calling back for more info tomorrow. This means no more Avastin for David. But.....overall, the dr said his MRI looks better. Not just stable---but better!!! This is was much much better news than I expected!

David however was upset about the bleed and no more Avastin. I hope that as the news sinks in about the MRI being better, he will feel a little better. He's still very sick, still in a lot of pain, still very very weak....but hopefully we are going forward.

They are giving David anti-viral medicine via IV for the shingles. It was to stop the spread....but the shingles that he does have will have to run their course. Thank God we treated it early and it didn't get in his eye.

I hope you and Ben and your family are having a wonderful summer!

Love and blessings,
Cindy

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Dear Cindy,

I am sorry that David is dealing with both a viral and bacterial infections. I was upset when I read that David had a fall because of improper supervision. I understand your husband reaction but I would have probably also let it go because I don't want to deal with the hassle. Now if had broken a hip maybe not so much...
I hope that your were able to enjoy your daughter's wedding despite being bitter sweet. Was David able to be at the ceremony?

Love,

Julia

Ctink8189
Posts: 5
Joined: Jun 2012

So sorry to hear about all of this. The fall, the infections, the bleed. How did the wedding go? I just recently joined this site for some hope and support for my mother and i have read all of your previous posts. David sounds like such an incredibly strong and amazing person! You as well and wish you all the best.

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