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tankdude

respectfully requesting prayers

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Checking in Tankdude. Still sending strength through prayers to and for Mandy and Mary.

Twenty four hour pain is mentally and physically exhausting. :praying: And :hug:to you

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Final update - Mandy hit her goal of being able to tolerate 80 ml of feed /hour - and most of the nausea and all the stomach cramping has gone. In fact, it was surprising - she actually woke up hungry on Thursday morning. Talked with the Dr., and she ordered a side of scrambled eggs. Was able to eat and keep those down. WIN! 

Now that she is home, she has a sore throat and a bit of acid reflux - but nothing unbearable. She has been able to eat one or two small meals a day of soft foods - mashed potatoes, scrambled eggs, most of a bowl of ramen, small chocolate shake, etc.  According to the GI Dr., that's a good sign and could significantly shorten the time she will have to put up with this feeding tube.

You can't tell me prayers don't work - Thank you and bless  you all.

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Easy with those noodles... can be hard to digest... and hope that shake isn't too much sugar !

But look at us 2 old bags worrying our darned fool heads off over here ! :facepalm1:We KNOW YOU GOT THIS ! ;)

We're SO happy for this good news today ! :wub: Thank you for sharing !

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YEAH :woot::woot::woot: YOU GO BABY GIRL !!!!  The third old bag's 2 cents is there is an awful

lot of sodium in ramen noodles. It's ok Sarg's girls with age comes privilege's worrying and taken

care of others. And a girl needs her chocolate right Mandy???  Thanks for the great news Tankdude !

 

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1 hour ago, tankdude said:

 

You can't tell me prayers don't work - Thank you and bless  you all.

You are exactly right, not only does He answer and bring relief but He loves hearing from each and everyone of us.  We truly have an amazing and awesome God.

I'm so happy about Mandy and know you and Mary have had a load of relief lifted from your hearts

Now Mary is up next...doesn't she go for her MRI this week. ?   I'm almost certain that I can speak for all of us here, she is in our prayers and thoughts...praying this too, will pass.

God bless you and your family, I know the hardship has been heavy

barb

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16 minutes ago, nannab said:

YEAH :woot::woot::woot: YOU GO BABY GIRL !!!!  The third old bag's 2 cents is there is an awful

lot of sodium in ramen noodles. It's ok Sarg's girls with age comes privilege's worrying and taken

care of others. And a girl needs her chocolate right Mandy???  Thanks for the great news Tankdude !

 

We luv TheNANNAB ,too !  ^_^:)

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Again - a thank you to all. Mandy will be heading to the Mayo Clinic in March, and we are hoping to find some answers. For those of you worried about her diet - you know who you are...:P  sodium is fine for her - in fact she is on a high sodium diet because her blood pressure is so low.  With this dysautonomia she has also been fighting POTS Syndrome for the last couple of years. Her dietician also said that at this point, any calories her stomach can handle are good calories. If she can keep down enough food that way, they may be able to regulate her feed tube schedule from 24 hours a day down to 16 or so.  That would make things a bit easer for her instead of having to stay connected to a bag of stuff all the time.

It's so tough to see my 18 YO daughter taking so many medications for her issues. She is taking 5 daily medications, has 2 more in case of certain issues (migraine or tachychardia) along with an inhaler twice a day - and now the feed tube. Here I am, 55 YO and taking no medications. No major issues except a touch of arthritis in my ankle - and she still won't listen to me about how certain supplements can help.  Ahhhh - to be 18 and know everything again....but I still love her.

Mary is getting another MRI - this time of her Sacral and Lumbar areas. Her pain management specialist is looking at the feasibility of an implanted nerve stimulator, depending on what this MRI may show. We realized that through the last 3 years, the lowest they have looked is the S1 vertebrae, so we are hoping for some revelations there. She did tell me the other night that she knows the supplements are helping. When I was gone last week with Mandy, and I wasn't reminding her to take them, she had an increase in her pain level.  We're trying to double her up on the one - but she's having issues with the detox it can cause, so we are working slowly.  We'll get there.

LORD my God, I called to you for help, and you healed me.
Psalm 30:2

 

 

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