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Melissa Update: Friday Nite


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Hello all!

Keep your bday wishes coming on Kristen's thread! Or under this one! Melissa will sooooo enjoy having them read to her!

I just wanted to update all of you out there who are worriers like I am.

I will keep this short for now, as I myself am wiped out from this stupid period (but certainly not feeling as crummy as our poor Sunfish)...but PLEASE check back under this thread over the next couple of days and I will continue to post more details instead of starting a new thread each time. And Kristen or Michelle, please feel free to chime in with more details!

I just wanted to give you all the update that I have gotten to speak with Melissa a few minutes the past couple of days and each day she is a little bit better...but has a LONG ways to go.

The absolute earliest she will be able to come home is Monday, and that's best case scenario. So, it will be a hospital birthday.

While she is doing 'better'--more stable, headache helped by morphine pump, and antibiotics to treat the correct infection (Sophia, I had that wrong--she does have that bacteria but it is the particular strain of it that she has that is rarely found in humans--and is in poultry. It can live harmlessly in the gut for years, but somehow it got into her bloodstream) she is still very, very weak and will have to be able to at least get out of bed and walk a few feet, self-cath, give herself abx every 6 hours, and get off of the morphine before she can come home.

The morphine makes her headache better, but leaves her feeling up to doing NOTHING. However, it is keeping the pain down and she can at least open the window now and see some light! She wasn't quite as loopy on it today though! ;) She has also been fever-free for a bit! Yeah!

This has been one heck of a harrowing experience for Melissa. She told me it is the worst pain she has ever been in in her life. She's been through test after test. And compared to her 'baseline' which is already low, she has had quite a setback. It takes quite a lot for her to say that.

This birthday will be a hard one--as this year has been for her. She is in a place of knowing that her condition is progressive and fighting with all she has to improve her quality of life. Her suffering has been hard for all of us who love her to bear. It is hard for me to imagine what it is like to walk in her shoes and endure all that she does with the spirit she does it with.

She and I have talked about how we can no longer remember what it feels like to have a 'good day' or be free of symptoms. She always feels sick...but keeps trucking along...."Good" takes on new meaning in our lives.

Please continue to keep her in your thoughts and prayers and send bday wishes her way.

I'll keep you all posted and please feel free to ask questions...and I can try to fill in with more details.

Know that she is much, much more stable and each day finds her a bit stronger....for this she is very thankful! Now, if she could just feel well enough for a bath, as she is a very dirty Sunfish right now! ;) Maybe she will get shiny for her bday! :) That would be a nice bday gift!

Thanks,

Emily

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Hey Emily!

I couldn't have written a better update! I just got off the phone with Melissa now and she said that things are improving, but obviously she is still very weak. I also can't imagine going through what she has been through over the past week. It is incredible how she was able to fight off such a terrible bacteria in her blood with the wrong antibiotic to boot! Those prayers are helping!

It still remains a mystery how that bacteria got into her blood. She joked that she thinks she has a chicken stomach! ;) It's very unsettling to not know where such a terrible problem came from, but at the same time, it's good that there are no abscesses in her intestines that could have leaked bacteria. One day at a time.

She told me that she was able to get a special shower cap to use in bed, which cleaned her hair up a bit. She also was able to wash her face, but she still looks forward to a shower. She had visitors today (including a large team of doctors), so it was a big day. It's tough for her being on the morphine because that lowers her BP, and steals even more of her strength.

Please do keep the birthday cards and posts coming! I told her that birthday wishes will be on their way, so send send send!!! I will put them all together with these wonderful posts, and she will be able to read them all next week.

Kristen

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thanks for the update ladies!

I am glad to hear that melissa is having some improvement.

Melissa I do wish you a happy birthday.. with healing thought s and prayers now and in the future.

You have such amazing spirit strength .. you are an inspiration dear!

Hope that you get to swim around in your "clean" fish bowl very soon..

love and hugs

linda

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Sweet Melissa,

My thoughts and prayers continue out to you. I am sorry your birthday will be in the "Castle" (word I learned for hospital after my hysterectomy)The way they charge in those joints, they SHOULD treat us all like a princess, correct?! :lol: All kidding aside, I know it will be difficult for you.

I just wish for you IMPROVEMENT...baby steps, big steps, leaps and bounds! Whatever you can get.

Oh, and keep a rolled up newspaper by your bed for any nurses or doctors that act up or honk you off. :ph34r:

Sophia

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Thanks Emily for the update. I know it must be difficult for you to post right now with your horrible period :ph34r:

Melissa,

I'm so sorry to hear you're in the hospital again, and on your birthday no less :lol: I really hope they can kill that nasty poultry bacteria and get your horrible headache under control so you can go home. In the meantime, know that we all love you and are rooting and praying for you here on DINET.

Hugs,

Lauren

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Emily -- thanks for the update.

Melissa, I am thinking of you, wishing you the best birthday possible and hoping you gradually improve and get your strength back so you can get out of that place! Take care.

Amy

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thanks for updating emily, i've been singing for melissa under kristens topic and will spare her another song!!! as soon as i'm able to go out i will buy her a card to send, or, when i'm up to it, i'll make her one!!!

we really are one big loving dysautonomiafamily!!!

corina :ph34r:

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Dear Fishy, I hope they change that filthy water in your bowl soon...hospital fishbowls are never as nice as the bowl you have at home. Here's to swimming outside of the hospital VERY soon, and no more birthdays in the pokey.

Nina

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My little Sunfish:

Hope that you can swim out of the hospital fish bowl soon and into calmer waters. This is no way to spend your birthday. I've had the "opportunity" to celebrate my birthday in the cardiac care unit....They wouldn't even provide a saltshaker for my birthday cake.

All joking aside, I wish you were home, not in the hospital. I send you hugs and good wishes.

Lois

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Oh Melissa!

I'm so very sorry for all you are going through. You've been so sweet , helpful and inspirational to us all. YOU definately don't deserve this.

Happy, Happy, Happy B-Day, sweetie! I am sending good thoughts, warm hugs, lots of love and prayers, prayers, prayers.

Swim home soon!

Julie

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Hi!!

I hope you had a happy birthday, and I'm thinking of you. I hope you are feeling better soon, and that you can get out of Club Med soon. Lots of love and hugs!! :ph34r::lol::lol:

Megan

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Melissa,

peach-rose-1-tn.jpg

I still continue to keep you in my thoughts and prayers. You are quite a trooper -----fighting such a terrible infection, and still trying to keep your chin up.

Happy Belated Birthday!-----I know you didn't want to spend it in the hospital, but you have lot's of us sending you birthday wishes, and wishes for a speedy recovery.

I hope the holidays are better for you, and you continue to build your strength.

Keep up the fight Dear,

HUGS,

Julie :0)

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A real quick update before I hit the hay...

Melissa is sounding more and more like 'herself'--meaning she is back to talking faster than I can keep up! :)

She is off of the morphine pump and watched movie tonight...she's getting a bit stronger and will hopefully go home on Tuesday.

I will share more details after I listen to a voicemail she left me today that I haven't gotten to listen to yet.

She sounds so much better than she did earlier in the week--and while I know she still feels like crappola, it is a relief to know that she is doing better and will hopefully get to go home soon. The whole ordeal was so scary and I am glad I'm hearing the gory details after the fact or I would have freaked out even more!

I know when she is able she will post her own story...

Also, I have passed on your wihses to her mom to print to read to her and Kristen will also send her a print copy.

Later alligators!

Emily

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Melissa's off the morphine (yay!) and she hopes to be coming home by Tuesday. She is weak and still can't get up, but is making progress, so that is good!!

Thanks for those who sent cards...I received 3 more today and will be including them in a mailing to Melissa soon. She should have fun opening them when she gets home!

Kristen

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I was cleaning out my voicemail box and it was such a contrast listening to a message from Melissa earlier in the week to listening to one from yesterday!

She was even able, she said, to be able to be grateful and thankful and enjoy her birthday. She is so amazing!

She was so sick earlier in the week, that she would not have even been able to accept phone calls or open a present or even care too b/c she was in so much pain and had such a high fever. But yesterday she was able to open gifts and be with her parents and she took joy in that, even though it was a day spent in the l'hopital.

She will be soooo glad to get home (although it presents some logistical problems, it's still better than the hospital!)

Emily

P.S. Katherine--thanks for your sentiments! It's better when Melissa and I 'trade-off' feeling yucky! I mean, we both always feel yucky, but usually don't have extremes at teh same time...but this week I felt so lousy too! :) Still, compared to her, I guess I was feeling good? ;)

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Thank you Emily,

It really helps to see your updates-----comforts me to know she is plugging along and licking this infection.

She is really a sincere and sweet person---and I wish her the best----------and also Happy Holidays!

You are so sweet to do this for her---and us--- ;) Especially since your not in the best shape yourself.

You have a good heart.

HUGS,

Maxine----------------------------------------winkingpinkpanther.jpg

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Thank you soo very much for the updates, Emily. Melissa is often in my thoughts and I wish there was more we could do for her.... I'll continue to keep her in my thoughts and prayers that she gets home soon!

Sorry this is a little late, but Melissa I hope you had a very happy birthday!!!! ;)

Jacquie

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