Scared of what's going on....

Kokopelli · Posted: Wed Feb 07, 2007 6:26 am Post subject: Scared of what's going on....

They have figured out that my mom's carbon dioxide levels are high and this is what has been causing a great deal of the confusion issues lately.

they did a bedside swallow test and said that they think she is aspirating when she's eating and drinking. So today, they are going to do a barium swallow test to see. They feel this might be contributing to the pneumonia and why it's not getting better.

Something else they are going to do, is a broncoscopy (sp?) - where they go down in your lungs with a camera to see what's going on. They think that her Lupus maybe effecting her lungs.

I'm not a genious, but if the Lupus is in her lungs and keeping them from functioning properly (getting rid of the CO2 in her body), and the Sjoegren's has started to effect her swallowing....

Right now they have her on a BiPap machine to remove the CO2 as she breathes and she was a lot less confused yesterday, but when they took it off so we could talk and visit, she got a headache and got more confused the longer she was off of it.

I hate this and I hate the decisions that I fear are coming.

MARYCAIN · King of the Jungle Joined: 03 Aug 2006 Posts: 1576

I am sorry she is having such a difficult time - it must be frightening for both of you. I've had a couple of bronchoscopies - they aren't as bad as they sound, because the doctors use enough sedation that you are barely aware of what's going on, and it isn't a painful procedure. Hopefully it will give the doctors enough information that they can treat your mom more effectively. Sometimes doctors learn enough from the bronchoscopy that they can actually do some treatments right then, like treating the lungs directly with steroids. I will be thinking of her today, and saying a few extra prayers, Please let us know how she does.

Kokopelli · Posted: Thu Feb 08, 2007 8:04 am Post subject:

Talk about a roller coaster ride.

My mom was very talkative and responsive last night when I went to see her. She even asked me to wash her hair! She ate some lunch and said that she had a perm scheduled and missed the appointment because of being in the hospital and she was even complaining about being there! YEAY!!!!!!!!!

The swallow eval went well, they said she's not aspirating when she's eating and drinking (thank goodness!!!). Now the next hurdle is the bronchioscope thing. Hopefully that will look fine as well and she will be able to go home soon. She was even caughing less!

I told her to quit scaring me like that, she was giving me gray hairs!!! LOL Laughing

IloveHistory · Bear Joined: 17 Dec 2006 Posts: 689

Hi Kokopelli!

I'm SO pleased that your mother seems to be getting better and that the swallow test came out fine! Smile

I'm sure that the main reason that she is improving is because of your love, care and support.

You and your mother remain in my prayers...

Keep well! Smile

Kokopelli · Posted: Fri Feb 09, 2007 6:53 am Post subject:

Remember that roller coaster I referred to before? Well, Wednesday was a really good day and I was so relieved and hopeful that she was going to cheat this and be okay again.

Well, yesterday reminded me that we still don't know exactly what's going on. Her oxygen level dropped to 74% and she turned blue so they put the BiPap machine back on. She was on it all day yesterday and is still on it today. I just wish I had some answers.

Her Cumidan level is still too high to do the bronchoscopy, but they may be able to do it this weekend - hopefully. And I'm hoping that will give us some answers.

Infectious disease is stumped and frustrated, I could see it in her face. The respitory people are just trying to keep her oxygen up and my mom hates the bipap mask. Last night I had to feed her under the mask (lift it and give her a bite and put it right back on).

I guess they are talking about sending her back to the nursing home and that may be a good thing. all of her stuff is there and it's more "home" to her then the hospital room.

MARYCAIN · King of the Jungle Joined: 03 Aug 2006 Posts: 1576

So sorry - I know the ups and downs are hard. Do the pulmonary specialists have any ideas? And has she been seen by a rheumatologist yet? If not, you might want to push for a consult before she leaves the hospital.

Kokopelli · Posted: Fri Feb 09, 2007 8:43 am Post subject:

No, pulmonary doesn't have a clue at this point. They said once they can get down in her lungs with the cam they will have a better idea of what's going on.

The Rhum. did come in and see her and said he would follow up with her when she got home. I was really disappointed that he didn't go over the tests that we had done. He said he wanted to do more tests, but he didn't offer any answers to what had already been done. I hear that he is pretty good. I hope so.

mnjodette · Posted: Sat Feb 10, 2007 4:18 am Post subject:

I sorry to hear that your mom had a setback, Kokopelli. I knoow how hard you've been trying to work through this with her. You've been there for her and are asking the doctors the hard questions. Keep it up - that can make a world of difference in her care! I'll keep you and your Mom in my prayers. Take care.

Jody
_________________
"Always laugh when you can. It is cheap medicine." Lord Byron

Kokopelli · Posted: Fri Feb 16, 2007 7:13 am Post subject:

My mom certianly does know how to give me gray hairs, that's for sure. She's finally home! She was discharged from the hospital yesterday afternoon and is back at her care facility. I know that her doctor will follow up on her Lupus and the other things as well. I think that this trip was a real eye opener for everyone involved and her doctor got all kinds of specialists involved in her care to get her better.

She doesn't have to be on the BiPap machine and sounds really good. I haven't been to see her for several days since I'm trying to get myself well. I have bronchitis and cracked ribs (from coughing). I'm going to go see her this evening for a little bit. I've been on antibiotics for 6 days now, so I don't think I'm contagious or anything.

Thank you all so much for your support and love. I'm so glad that I found this board.

MARYCAIN · King of the Jungle Joined: 03 Aug 2006 Posts: 1576

I am glad she is doing better - but take care of yourself too! I've broken ribs before and they HURT!!!
Please keep us posted on how she is doing.

IloveHistory · Bear Joined: 17 Dec 2006 Posts: 689

Hi Kokopelli!

I'm really glad to hear that your mom is getting better. I'm sorry to hear that you have got Bronchitis though - I am now having it for the third time in a row! Mad

I know that cracked ribs are really painful, so just make sure that you rest and don't over-strain yourself!

Keep well and let us know how you and your mother are getting on!

Kokopelli · Posted: Thu Feb 22, 2007 8:30 am Post subject:

I just got off the phone with the director of nursing at mom's facility. Like me, they have noticed that when she has to go to the hospital, she never really gets back to where she was before that.

When she first got back, she was sociable and had good spirits. Now, she's sleeping a lot and having problems driving her wheel chair. She said that my mom's medical conditions were...well...progressing. And it's time to have the DNR conversation with her.

As for me, I'm on my second antibiotic and still coughing - rib still hurting...but now my heart hurts. I don't want to have this talk with my mom.

MARYCAIN · King of the Jungle Joined: 03 Aug 2006 Posts: 1576

I'm sorry - I know this is painful - but it is so important to know what her wishes are before you have to make any decisions. It doesn't get any easier - there's no good way to do it - it's just one of those really painful things that comes with being an adult child to an elderly parent. You and she will both be in my thoughts and prayers.

littlered · Wolf Joined: 20 Sep 2006 Posts: 549

I, too, am praying for you and your mom. Keep us up to date, and feel better. Love, Kathy

IloveHistory · Bear Joined: 17 Dec 2006 Posts: 689

I will be praying for you and your mother too, Kokopelli.

God bless you.