Monday, September 15, 2008

Cheesecake and diapers and helicopters

There are seven people sleeping in my apartment right this minute--along with two confused kitties and a certifiably crazy, diaper wearing dog. It is impossible to step somewhere without stepping on something...or someone. Literally.

I don't have the slightest idea where I left off with you all last week so I may re-tell something or leave something out, but I will try and get you updated. My mom was sent home last week, with instructions on how to get in touch with hospice. HOSPICE. We all know that to utilize the services of hospice, you have to be terminal, and at least within six months of checking out and moving on to the hereafter. While that came as no surprise to any of us, we were not really ready to hear that word, or think about the ramifications of making that phone call. She got out of the hospital on Wednesday afternoon, but we still had no results of the lung biopsy done on Monday. She looked no better, was feeling no better but they sent her home after nine days with an excuse that medicare will not pay beyond that time frame, regardless. Once home, she grew remarkably weaker and did not improve. On Thursday, after a few phone calls from me, I did find someone that could give us the results of the test. "No evidence of any cancer...however, significant pneumonia and severe infection present." We were trying to be ready for anything, but we were not ready for that. While I was doing the happy dance, I knew that really was an insignificant detail at that moment because my mom was sicker than I had ever seen her. I was also really pissed, as her doctor called each of us girls and her husband personally with the news that she was certain it was lung cancer, eight days before. Now I realize that doctors have a responsibility to be up front and straight forward with everyone, but this diagnosis was plain WRONG. Plus, she had been sent home with severe infection in her lungs, and nothing was being done about that. NOTHING. The bad-news-happy doctor (who is my mom's regular physician) did not have the time to call us with the latest...she had her nurse call with the correction. Keep in mind that my mom was on no medications to make her infection better, she had been left to deal with this with pain medications only. I was outraged. A prescription was sent for an ineffective antibiotic and a recommendation to follow up with her pulmonologist. She could not walk across her bedroom to the bathroom without help, and even that wore her out. This went on until Saturday morning, when I happily made her a cheesecake -- that is her most favorite food ever, and she was not eating anything, and I had hopes that she would at least like to have that. I drove down that morning with the cake---when I got there, I was sad to see that she looked worse, but she wanted to get up and come downstairs for coffee and cake. I helped her down the stairs--when she got to her chair, she couldn't get her breathe. I brought her inhaler and she tried using that, after a few minutes, it was obvious that wasn't going to work. So, I had to call 911. The ambulance arrived and started working very quickly to help her get her breath. They left with the sirens blaring. I knew that was a bad sign. Once I arrived at the local hospital, I could see that it was very bad. After a couple of hours a what seemed like a gazillion tests there, it was determined that she needed to be LIFE FLIGHTED to Des Moines...and that a ventilator was necessary. And that is where we are right now---my mom is finally up here in Des Moines at a hospital that understands the difference between lung cancer and pneumonia, and she is still on the ventilator, and it is breathing for her. She does seems stronger as of last night, and we now have hope that she will live long enough to be released from the hospital and go home again. Sadly, she stayed in the hospital in Podunk for nine days with ineffective medications, and she would not have wanted to do that had she not thought that she was there for lung cancer...she wanted no chemo as she believed that her time had run out, she was not physically strong enough to endure it..but had she thought that what she had was infection, she would have gladly been transferred to a larger hospital in the city for treatment. I understand that doctors make mistakes every day but this was handled incorrectly from the beginning. I also understand that my mom is seventy-three years old and that her lungs are in seriously bad shape, whether it's caused from cancer or something else---and that she will probably die from pulmonary disease. That could even happen today. However, she has suffered for far too long with this, and it all could have been avoided. She has been through hell, and the rest of us have too. I am mad but also happy that she in on the right track now. I do not want her to suffer any more, but I am not ready to let her go just yet. She looks so small and sad in that giant hospital bed, hooked up to tube from every available hole. And that is where I have been spending my days. And nights. And both of my sisters and nieces are here, with one brother in law. And it is tight quarters but we are happy to be together and we all have hope again. Just maybe she will get to go home and feel halfway decent again soon.



Summer said...

What a nightmare for you and your family. I'm so sorry.

SOUL: said...

talk about some mixed frickin emotions. dang girl you've run the gambit here haven't ya? and you still aren't done it seems.
it does look like there may be some hope here tho that wasn't, so much only a few days ago though.

i do know how tough it is runnin and hour or two back and forth to the hospital everyday... but somehow it is worth it. it's the right thing to do. for you and for her.

happy to hear that your wall to wall family- i know it's added stress.. but it is also good for you-- maybe not at the moment-- but you'll realize that you have found laughter where there was none. and comfort when you had none.
ya know?

i think at my dads place when he was sick, at one point, there had to have been somewhere between ten and twenty people stayin there-- he had a four bedroom house-- but it was still a madhouse-- and the many were strangers to each other. so it was very odd. at least if you get pissed , you can slap the crap out of your sis, and she'll still respect you in the morning. :))

i didnt have that option. cuz i hardly knew most of the people i was with.

i really hate to hear your mom is sick.. but at the same time-- i am prying that it really is NOT cancer, and that they can fight this infection and get her well, and back on her feet in no time.
(wishful thinking?-- it's possible. )

love ya pal. i'm thinkin of you and yours a lot out here.. just busy and not around much.

hope your day is good to you.



I just wanted to tell you how outraged I am due to the incompetency of that other hospital. I do hope that when the time is right you will discuss "legal action" because they did nothing to keep their patient comfortable..your mom who is already so ill was made to feel worse physically--that is just wrong.

I pray that something good will happen..and that you all have more time with your mom.
Cheesecakes do work miracles--if you hadn't made her one, you might not have been there in time to help her when she had problems breathing.

I'm very sorry for your family. How is her husband doing? Is he up with you guys as well, or nearby?

just awful and painful, absolutely painful.

Terri said...

wow Jaime; that is some messed up medical care and I'm not a bit surprised. I would have a few words with the doctor that diagnosed her. So are we saying/hoping cancer free then? But still with serious lung issues? Just want to make the prayers that much more specific. Glad all the family is surrounding her and you!

Gypsy said...

This is such a good news/bad news post that I hardly know where to start. I am so pleased that your mum's diagnosis is not as dire as first thought and I hope and pray that now at least she will get on the right medication to at least make her more comfortable. The poor love...she has really been through the wringer hasn't she and all of you along with her.

Poor crazy dog will probably really lose it with all those people there but I think it will do all the humans the world of good.

Stay strong Jamie, big hugs.

Cheryl said...

I read this with tears in my eyes. I'm SO, SO sorry for this incredible mess and the pain and suffering your mom had to go through and your whole family. So unfair! So incompetent.

Thank goodness you're all together now. You can be there now. Everything else can and will wait. I'm with you in spirit, Jamie.

Vickie said...

Jamie, I lurk and seldom comment unless I have something I know will be benefit. There are several reasons I lurk---first it is very difficult for me to type as I have Secondary progressive multiple sclerosis and have never found a voice recognition program that works for me.

I wanted to comment on this post because I have been where you are with your mother---and know the frustrations you are experiencing in the care she has received. Also something many people are not aware of is that hospice care is available for people such as your mother. It no longer means she will die in six months. Hospice has found people are living longer and longer lives and they have reevaluated their criteria. I know this because almost two years in the hospital and her physician suggested hospice and I freaked out. She had suffered a small stroke a was a diabetic. She went to a Skilled Nursing Home for Rehab and her room mate there was a Hospice patient and has been one for over three years.

You might want to check this out because trust me they are very helpful.

BTW I saw you at Gypsy's.

Lizeli said...

Oh Jamie, I don't even know what to say. What a mess. I am so sorry you all have been through so much. I really hope your mom will get the medical treatment she deserves now. (((Hugs)))

Mary said...

I wish I had words to express how my heart hurts for you and your mother. The medical community can be either a blessing or a curse. I'm sorry your mother experienced the latter.

I'm sure you will address the mis-diagnois with the proper folks when the crisis calms.

It is wonderful that you have family with you and that you don't have to make the long drive.

Again, Jamie, I don't have words to express how I feel for you and yours other than "I'm so sorry." Those words are so inadequate. I send a warm hug to you full of love and understanding.

desert dirt diva said...

jamie, i am so so very sorry about yur mom..iand i am very mad at the dr.i can't believe they had such a wrong diagnonsisfor that many days....grrrrrrrrr, hope in the bigger hospital things will get better for her quiker...take care and i'll say my prayers for you and your family.....

Gramma Jo said...

I have stumbled onto your site via another site and cried at your post (aside from the fact that I have been hosting my own pity party), my mom was diagnosised wrong and when she was finally diagnosised correctly she had advanced lung cancer. I understand your pain in looking at your mom in a hospital bed and realizing that she seems so small and hopeless. I'm so glad that you made her her favorite cake. I snuck my Mom jelly filled donuts because that was one of the last pleasures that she craved and could enjoy. I will be watching and praying for you as you go through this.

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fiwa said...

Still sending you my hugs and prayers. I'm sorry you and your mama had to go through all of this.

love -

M Chickk said...

Unfortunatly, this kind of thing happens more than you think. My dad was seriously misdiagnosed (small town doc/hospial) and by time we got him to a bigger hospital it was too late. By the end of that week he was gone.

I am so glad your mom is getting the right treatment now. Having so many family memebers around is a huge help even if you guys are all on top of each other. You are all in my prayers.

Kelly Jene said...

Oh Jamie, I'm so sorry. I would be furious!! How could they misdiagnose her and then make her leave?! I know this is not the time, but is there anything you can do about that doctor?

My prayers are with you and especially your sweet momma.

Anonymous said...

I know that small town hospital feeling...they did mess up...and talking about hospices before it is even necessary! The good news is that it is most likely not cancer...but the letting the pneumonia / infection run your mom down to almost nothing... inexcusable!!! Praying for you and hoping this big hospital can turn things around.

Golden To Silver Val said...

First of all, I am so VERY happy that she does not have that insidious disease...this is an answer to many prayers. I am APPALLED that she was treated this way. I remember thinking to myself...they actually kicked her to the curb...gave up on her and sent her home to die figuring she was a lost cause. I thought that maybe she was very old and when I came to the part where you stated she is only 73...then I was REALLY MAD. There just is NO excuse for any of this. I would NEVER let that hospital treat ANYONE (and that includes you) in my family again. When mom gets well and I'm banking on and your family need to seriously think about some sort of action that will assure that no one else goes through such needless mistreatment, not to mention the erroneous diagnosis. This doctor needs to know that you and your family all realize that she just about killed your mother. This is inexcusable and unforgivable.
Big hugs and love to you and yours Jamie. Thank God it wasn't this horrible dreaded disease and we will pray that the infection she has can be cured and she will, once again be able to enjoy life. Love, Charlotte

abbagirl74 said...

I thought about you all day today. I was hoping it was going to be a good day for you.

I wish I was as strong as you. I am such a big scaredy cat about life. But not you, no. You take life by the balls and say Hey!! I am here and you have to deal with it!

I love it.

Smocha said...

As usual , everyone has already said all that I was too speechless to say:)
Just wanted to let you know you guys are in my prayers as well.

Podunk hospitals are the pits!
A lifetime ago ,we had a step dad who was a doctor. I was only 11 ,but for some reason I remember him saying "if he ever had to go to a hospital, it would be a big city teaching hospital."

Amen to that! I hope they are able to make your mother more comfortable now. Pneumonia is painful damnit!

Vicki is right about hospice. My mother had it for a long time and so did my friends husband who just died. They reevaluate ,every 6 months. And are wonderful,helpful people.

Hugs to all of you

ac said...

What a roller coaster ride. You must be exhausted.

I'm keeping good thoughts that your Mom will get strong enough to go home. Thank goodness for family who will come and sleep on your floor and help keep your spirits up through difficult times. I would worry much more about how you are doing if I didn't know your family was right there with you.
Consider yourself hugged, my friend.

Brad said...

Hello love- I hope Mom's feeling a bit better today. I worry about you! Please know your in my thoughts.

desert dirt diva said...

hope your doing o.k. today jamie, and your mom is feeling better...