Asking for DV Prayer Warriors again

[Flash101]

What Boosterbglee said 

 

101

[moose 57]

My Prayers are out for Mandy, you, and your family.  

[tankdude]

So she is recovering from an endoscopy this afternoon. Took some biopsies to test for mast cell issues. Nothing super obvious.  Still experiencing pain when trying to use feed tube though...however it is less.  Looks like tommorow is a fluoroscopy look at how the tube is placed using a contrast stain.  The initial CAT scan seemed to show it sitting where it's supposed to be, but he believes this gives a better look. It may also reveal what he terms an intestinal pseudo-blockage. 

 

O Lord God, I come to You for help and succor. You have afflicted my child Mandy.Help me to understand that You mean well. Give me grace to bear my child's affliction with patience and strength. Bless me, O Father, and restore my child Mandy to health. Do not forsake us, but give us an assurance of Your loving Kingdom.
Bless this illness to me and my child Mandy, and help us both to be better children of Yours because of it.
In the name of Your Holy Son Jesus Christ. Amen!

[Shedagal]

Father, I thank you that you are GOOD!!  Your Word says Satan comes to kill, steal, and destroy; but You come to give life, and life more abundantly.  Sickness does not come from You.  Healing was bought by the stripes that Jesus took.  I pray that you would give understanding of this truth to those who do not comprehend it, and that they would rise up in authority and receive the healing You provided.  In the Name of Jesus, Amen.

[nannab]

Continued prayers for Mandy. 

[Bama Girl]

Merciful Lord, I pray you will wrap Your Loving Arms around Mandy and make her whole again. Bless her loving family who are worried and tired. Bless this family as only You can do. I pray for healing, comfort, and Your Presence. In Jesus’ Name. Amen. 

[MyLadiesDaddy]

Just saw this my friend, My family and I will keep Mandy in  our deepest prayers. I can't even imagine what it is that you're going through and doubt that I've the fortitude to be half as strong as you and Mandy are. You're a good man and an Awesome Daddy. 

[8th ID]

Tank, My prayers go out for your daughter and you. Please keep us posted.

[tankdude]

Just a quick update -

 

Mandy has totally baffled the medical staff here. Her motilitiy tests and all the imaging appear normal.  They can see no reason for what is going on - but they know there is something blocking her ablity to use her G/J tube.  The tube is clear - that's been confirmed. Her intestine is moving liquids - slowly - but it is moving them according to the barrium they injected through the tube yesterday.  

 

She tried restrting her feedings yesterday - but after 2 hours it was so painful she had to stop.  Tried again a couple of hours later - same result.

 

We have an Internal Medicine specialist who does work with Mast cells that we are trying to consult with. Hopefully he has some ideas. Going to try her feed tube again - but at an even lower right this afternoon. We need to get something into her because now her electrolytes are starting to get out of balance.  

 

That's the update - again - thank your for all the prayers. I KNOW that they will be heard in God's time and in His way.  

 

'Jesus. I trust in you'

'Jesus. I trust in you'

'Jesus. I trust in you'

[Synopsis]

Thank You, TankDude, for the update. I will keep praying that this all gets resolved, Mandy can injest food and electrolytes, and Mandy progresses through healing to health.

 

Please keep us posted with more news when available!

Edited March 1, 2018 by Synopsis

[429]

I hope you don't care and even if you do, too bad for you. At the end choir practice we name prayer requests and last night I named Mandy. We all prayed that God's will will be done for Mandy. And that's another 20 folks who will be lifting her up through the week along with me.

Prayers continuing.

[tankdude]

19 hours ago, 429 said:

I hope you don't care and even if you do, too bad for you. At the end choir practice we name prayer requests and last night I named Mandy. We all prayed that God's will will be done for Mandy. And that's another 20 folks who will be lifting her up through the week along with me.

Prayers continuing.

Thank you so much for adding her to your intentions. I'm of the opinion the more petitions before God the better. I may be a practicing Catholic ( practicing because I'm still trying to perfect it) but I feel any requests to God are heard. All my Christian brothers and sisters matter to me. Bless you for your caring.

[Sage449]

Dear Lord, All our times are in your hands.
All diseases come at your call, and go at your bidding.
You redeem our life from destruction, and crown us with loving kindness and tender mercies.
We bless You, that  You have heard our prayers, and commanded deliverances for Mandy, your servant, who is under your hand.

Mandy is brought low, but You are helping her; You are leading the doctors in healing her. Give the doctors extrordinary wisdom to help her. Give Mandy and her family peace and stamina to see this through. In the name of Yeshua, Amen

[Muleslayer]

6 hours ago, tankdude said:

Thank you so much for adding her to your intentions. I'm of the opinion the more petitions before God the better. I may be a practicing Catholic ( practicing because I'm still trying to perfect it) but I feel any requests to God are heard. All my Christian brothers and sisters matter to me. Bless you for your caring.

In the name of the Father The Son and the Holy Spirit.

Amen

[patrickgold]

Praying for Mandy and you during this lenten season.  Christ offers us His divine mercy, His divine love...we ask that Christ continue to be the center of your life.  Trust in Jesus indeed.

[new york kevin]

On 2/27/2018 at 7:31 PM, Shedagal said:

Father, I thank you that you are GOOD!!  Your Word says Satan comes to kill, steal, and destroy; but You come to give life, and life more abundantly.  Sickness does not come from You.  Healing was bought by the stripes that Jesus took.  I pray that you would give understanding of this truth to those who do not comprehend it, and that they would rise up in authority and receive the healing You provided.  In the Name of Jesus, Amen.

Tank and Mandy, my brother and sister in the Lord.  Amen to what Shedagal said. Invite the Father into her room and into the cure for her diagnosis. When things are to much for you, take all your concerns, frustration, even anger to the foot of the cross. Everytime, how ever many times a day you may need to. If we do something wrong, and we all do, our Lord and Savior will not correct us with things that are not of Him when we go astray.  We  simply need to tell Him we are sorry and ask for His forgiveness. That is all, and you know that. He will not shame us, He will not call us unworthy, He will not tear us down. Satan may try and convince us this is why Mandy has this illness, but he is a liar. Please receive this comment as encouragement, for that is the only way it is ment. Love, NYK.

[tankdude]

So - here is where we are today.

 

Mandy is still in the hospital. She had a port put in this morning so she can start total intravenous feedings because her bowel can't seem to handle more than 5 ml/hour and she needs to be at closer to 70 ml/hr in order to sustain herself.  We were hoping with some luck to be out of the hospital and home today - but we found  out there is a national shortage of the TPN formula (intravenous food) and we won't be able to get any until Thursday from another town 90 miles away. So - one more night in the hospital. If they confirm delivery for Wednesday and home health care has an opening, we will be out of here tomorrow. 

 

This is a stop gap until we can get her to a national type facility that may have answers.  Currently have calls into Seattle Children's Hospital and Children's Hospital of Wisconsin. They seem to be our closest best bets because of there motility clinics.  The last we heard, however, was unless the Dr. declares it urgent ( not being able to eat seems urgent to me) the next open referral date is in June.  Hopefully Wisconsin is a shorter wait.

 

Again - thanks for all the prayers. I for one feel some serenity knowing that there are so many voices asking God to look upon us. Bless you all.

[Muleslayer]

Tank

i have a lot of flyer miles available.

contact me if they will help you get food for Mandy.

[tankdude]

1 hour ago, Muleslayer said:

Tank

i have a lot of flyer miles available.

contact me if they will help you get food for Mandy.

That's a wonderful offer muleslayer - and if it would help I'd take you up on it. I might make a few phone calls and see if there is a possibility.

[tankdude]

So- Mandy is home, but bureacracy has reared it's ugly head.  We we were under the impression that she would be able to start the Intravenous feedings (TPN) at home with a home health service setting her up and her primary care physician monitoring her lab work every few days to ensure that nothing was out of kilter until the got the formula set for her body.  Apparntly the hospitalist who was helping us - and the case manager assigned to follow up - were unaware of a few things. They were both fairly new with this hospital (which just recently changed owenership also).

 

Well - Since a hospitalist ordered the TPN, as soon as Mandy was discharged from the hospital, those orders were no longer valid, and they needed another doctor - either her GI  specialist or her Primary Care provider - to write a different order. Because her Gi doctor had no hospital rights with this hospital (she runs an outreach clinic in the town from a Regional Helath Center - in one of their offices!) she was not able to see Mandy while she was in the hospital, and didn't feel comfortable with writing her that order.  Her Primary Care physician was afraid it was outside of her scope of practice, so she wouldn't write the order. On top of that, we found out that the Home Health Care doesnt normally start TPN in a home setting - so they want her to be re-admitted for a couple of days while they start the feeds. Add to that we are still waiting to hear back from either one of the advanced clinics on the availability of a date that is sooner than June. My level of frustration is pretty high, as you can well imagine.

 

Mandy and I spent an hour with the Hospital's Patient Advocate yesterday - while she was at the infustion center getting her usually scheduled weekly infusion - and hopefully we may have unlocked another avenue to help expedite things. I do know that her admission case is going before the Chief Medical Officer review board. Hopefully that can help other who may run into the same problem having a smoother admission through their Emergency department. 

 

Also - about an hour after that meeting with the advocate, she got a call from her Primary Care physician - who will now write the oder for 2 weeks, which is when she is scheduled for a consultation to become a patient of the adult GI doctor here.  She also has a meeting with the head of the hospital Nutritionists to work on finalizing an initial formula. Bottom line - it sounds like we are finally getting somewhere at least on the local side. 

 

So - for me - the last few days have definitely been about the Serenity pray - I pray that all of you praying for us will join us in it - not just for us, but for yourself also - 

 

"God grant me the serenity to accept the things I cannot change; 
courage to change the things I can; 
and wisdom to know the difference.
Living one day at a time; 
enjoying one moment at a time; 
accepting hardships as the pathway to peace; 
taking, as He did, this sinful world as it is, not as I would have it; 
trusting that He will make all things right if I surrender to His Will; 
that I may be reasonably happy in this life and supremely happy with Him forever in the next. 
Amen."

[umbertino]

 

Wishing Mandy, you and all your family the Best....

 

 

Prayers out