Posted on 07/16/2009 3:01:05 AM PDT by Concerned
URGENT PRAYERS NEEDED - STEPHANIE'S 3RD TRACH OCCLUDES - HOSPITAL ARM-TWISTING for DNR
Earlier thread and updates:
http://www.freerepublic.com/focus/news/2283778/posts
http://www.freerepublic.com/focus/news/2283778/posts?page=181#181
http://www.freerepublic.com/focus/news/2283778/posts?page=203#203
http://www.freerepublic.com/focus/news/2283778/posts?page=239#239
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(1) THE 3RD TRACH (2ND CUSTOM) ALSO OCCLUDING
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Prior to the ENT Doctor inserting the 3rd trach (2nd custom), she told us it was our last option, other than re-intubating Stephanie.
For some reason, the trach keeps moving around inside Stephanie's trachea and occluding. It is EXTREMELY positional. Supposedly, the shape of Stephanie's trachea is sort of zig zag.
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(2) SHE WAS STABLE & IMPROVING WHILE INTUBATED
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The ONLY reason why we trached her was that the Pulmonologist Doctor (that I do NOT like), and the Respiratory Therapist, kept STRONGLY PUSHING it, saying it would really help her and be FAR BETTER than Bi-Pap or intubation.
STEPHANIE WAS **STABLE** WHILE INTUBATED!!!!!!!!!
SHE WAS **IMPROVING** WHILE INTUBATED!!!!!!!
AND SHE DIDN'T HAVE INFECTIONS!!!!!!!
Of course, although no one could know for sure how well it would work, we RELIED on their training, expertise and CONFIDENCE that it would be "THE" ANSWER.
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(3) DOCTOR / HOSPITAL PUSHING DNR
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I am absolutely SICKENED that the Doctor and hospital are PUSHING us to give them orders to DNR.
First, they PUSH to get RID of the intubation---which was WORKING---to go to a trach, then when the trach doesn't help, but instead makes it FAR, FAR, FAR WORSE, they want us to order DNR!!!
They especially don't want to have to give her CPR compression, claiming that they would likely break her ribs if they were to have to do it to her.
Clearly, I don't want Stephanie to hurt or be hurt, but I am VERY CONCERNED a DNR would give them an excuse to not give her CARE if/when she occludes. Since she has no assets or income, she is over 18 (and we could not get insurance on her), and she is on Medicaid, they have been ESPECIALLY eager to get her out the door instead of getting her well first.
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(4) DOCTOR PUSHED FEEDING WITH BI-PAP
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When I saw the Bi-Pap Stephanie was on, I was NOT real comfortable with it. I wanted her intubated and to get an "NG" tube so that she could NOT have to worry about breathing or eating.
But the Doctor and hospital RESISTED INTUBATING!!!
And they kept saying that you couldn't get an NG tube with Bi-Pap because it would leak air. But they EVENTUALLY DID JUST THAT ANYWAY!!!
She IMPROVED SO MUCH with the NG tube, they sent her to a regular floor!!!
Once we got to the regular floor (with Bi-Pap), the Doctor then INSISTED that we try to FEED HER BY MOUTH even though they had put in an NG tube---and it WAS WORKING!!!!
And then, she ASPIRATED when fed because she NEEDED the Bi-Pap to breathe yet could not swallow fast enough to get it out of the way before having to have the Bi-Pap!!!
She had been MAKING PROGRESS until then, but then she CRASHED when she tried to eat WHILE STILL DEPENDENT ON BI-PAP (WHICH BLOWS FOOD/LIQUID DOWN YOUR AIRWAY)!!!
At that time, SHE HAD NO INFECTIONS!!!
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(5) I'VE CRIED SO MANY TEARS I CAN'T STAND IT!!! BP 176/108
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Every time the Doctor wants to have a "conference," it is REALLY BAD NEWS!!! And it gets WORSE EACH TIME!!!
Each time, my blood pressure SKY ROCKETS! I took it today after the meeting and it was 176/108!!! (And I take BP meds, although my Doctor just changed it because of a reported defect with the med).
I have cried and cried and cried---till it HURTS!!!
And it REALLY HURTS to think that we may lose Stephanie when she just went in due to a STUPID SEIZURE THAT SHOULD HAVE BEEN CONTROLLED WITH MEDS!!!!!!!!!
And then she ASPIRATED and got ASPIRATION PNEUMONIA---NOT viral or bacterial pneumonia---ASPIRATION PNEUMONIA ---as a result of a STUPID SEIZURE THAT SHOULD HAVE BEEN CONTROLLED BY MEDS!!!!!!!
I am HEARTBROKEN!!!
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Oh, I am so sorry; my prayers are with you.
Is a peg the same thing as a button?
I too have worked in hospitals my whole life....
I don't know how long one can be "intubated"....as opposed to a trach.....intubation can cause problems all by itself.....
as far as the DNR....you have to look at it from the Dr's side...he or she is treating a horrible situation...he or she no more wants Stephanie to be in pain or discomfort than you do, and since drs are supposed to relieve pain, when they can't they can become discouraged and frustrated..to them, a peaceful death would be preferrable to an agonizing death over the next few months...
but its not their decision...its yours.....Medicaid or not..(my dtr has Medicaid) you are the one that should make the decision....
my advice,find an ally in the hospital....a chaplain or a patient advocate...tell them you are felling pushed to do things you do not want...then go sit with the dr one on one, impress on him or her that you are not ready to relinquish your Stephanie....that you want everything done reasonably to help Steph....the dr must abide my your wishes....
in some very infrequent circumstances, if a family continues to push for extended and involved treatments for a patient that has no real chance to improve, a meeting will be called with the ethics board....at that time all viewpoints are gathered and the dr if okayed may very well make Steph a DNR...but that is way, way down the road....
keep the faith.....I don't know why God puts people thru so much here on earth....we'll have to ask HIM when we get to HIS house, but until then, please know that you and your family and your beloved dtr are in our thoughts and prayers.....God Bless....
"Father in Heaven, I commit precious Stephanie unto Your Care. I ask that You hold her in Your Loving Arms so she can rest and can be healed for your Kingdom and Your Glory! Please touch and heal every part of her that needs to be made whole and well again in Your Loving Name I ask this,amen.
That is what we were told with our josh too (carepage Joshuaourwarrior)
A person can’t be permanently intabated or they will not be able to get out of ICU. They have to do the trach as there is no other way for them.
Yet I am SO sorry you’re going through this. Drs don’t seem to have the time to really give meanings behind what they’re doing and why.
Hang in there.
Our Father Who art in Heaven
Hallowed be Thy Name!
They kingdom come!
They will be done
on earth as it is in heaven!
Give us this day our daily bread.
And forgive us our trespasses
As we forgive those who trespass against us.
And lead us
not into temptation
But deliver us from evil.
For Thine is the kingdom
and the power
and the glory
now and forever!
AMEN!
Prayers for Stephanie & family
I guess I wasn't clear. They wanted to get my mother out of ICU even though she wasn't ready. They can't release someone from ICU unless they are no longer intubated which is why they were pushing it.
BTW, my mom passed away Dec. 30th. My dad passed on May 9th.
I miss them.
Ray
We spent 102 days at Mott’s when our grandson had his allergy shot gone wrong...(he’s in a wheelchair now unable to initiate movement or speak) and it was one long 3 months.
My dad died in April and they had him sign the DNR 3 times even though it was on file at the hospital. They sent him home to die under the supervision of Hospice.
I was just saying that part of when they wanted us to let Josh go was because they didn’t think he’d ever be able to breathe on his own...and a person can’t be intabated more than a certain amount of time. Well he showed them...He’s doing things they said he’d never be able to do..but still the journey is long.
The problem is long term intubation ie. about 2 weeks. The trachea starts to become stenotic. If the doctor felt she would be difficult to wean off the vent, then its better to have the trach
Another problem with intubation is eventually the trachea starts to ulcerate which leads to more problems such as subcutaneous emphysema etc. as for the seizure meds not working, the meds often have to be fiddled with and adjusted. When a patient has multiple medical problems, along with new meds being added and discontinued as well as other stressors. Seizures can be difficult to control. I hope everything works out.
I just got home from the hospital at 4:30 am. Stephanie has had 4-5 occlusions within the last few hours. They just can't seem to keep the trachs from occluding. She did NOT have this problem with intubation.
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(2) CALLED PASTORAL CARE & FUNERAL DIRECTOR FRIEND
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I was VERY concerned that with two happening within a couple of hours, it might be all over for Stephanie, so I called our Church's Pastoral Care number as well as our friend who is a Funeral Director, to put her on alert.
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(3) MET @ HOSPITAL - PRAYERS, TEARS & HUGS
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The person on call for the Church met me at the hospital. My husband had been at a men's Bible study group, and he and one of the group members also met me at the hospital, as well my brother. His son took our younger daughter back to my brother's house for the night.
After some prayers, tears and hugs, my husband and the others left the hospital. I stayed on and there were 2-3 more occlusions after they left. It really does not look good. I went home while her numbers were okay, but as tired as I am, I am having a hard time sleeping. I'm going to try to go to sleep in a few minutes.
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(4) A SEIZURE LED TO ALL OF THIS!!!!!
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It still makes me SICK that she went in with a SEIZURE that SHOULD have been controlled by meds---and ASPIRATION pneumonia stemming from the seizure!!!
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(5) PLEASE PRAY FOR A MIRACLE & TO HAVE TRACH STOP OCCLUDING
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PLEASE PRAY that Stephanie's trach will stop occluding. We may try to go back to intubation for a week or two and hope and pray for the best.
I do know that a person is not to be inbutated for more than 2-3 weeks. It will cause irreparable harm to the throat including the vocal cords if you keep a tube in that long.
So the standard practice is to go to a trach after a few weeks of intubation. That I do think was the right thing to do.
You must fight for her and resist all their pushing for a DNR order! I know how people who work in hospitals are. They become desensitized to death. Fight them
Percutaneous epigastric tube...
Now there is a type of Peg that looks like a button, it is a low profile port that one connects a special tube used for feeding. It is desgned for very long term use. The other type tube is simply a tube protruding from an area generally on the upper left quadrant of the stomach.
“You must fight for her and resist all their pushing for a DNR order! I know how people who work in hospitals are. They become desensitized to death. Fight them”
Well not all of us are desensitized,some of us are fighting from the inside of the culture...but then again, I’m a FREEPER so what would anyone expect! ;)
~Prayers~
Stephanie died at 1:37 PM, Saturday (07/18/2009), just 9 days before her 25th birthday.
My HEART ACHES and my TEARS BURN in AGONY with the loss of my sweet Angel, Stephanie!!!
After she died, my chest was so tight, I checked my blood pressure. It was 183/108. And that was after I had sat down for a few minutes to get some soup to eat.
Holding my daughter in my arms and watching helplessly and lovingly talking to her as she died was the most excruciating thing I have ever done in my life.
A friend of mine's mother was also in the hospital about to die. My friend just texted me about an hour ago and said her Mom died a couple of hours before she texted me.
I wish the pain of death, for the one passing through it and for the loved ones left behind, were easier. It was the worst day of my life to lose my Stephanie!!!
PLEASE PRAY for God's hand over Stephanie in heaven and for protection and peace for my Mom and Dad, my sister, my brother (and their spouses and children), my husband, other daughter and me, as we have to go through life without sweet Stephanie.
PLEASE PRAY for conversion for my Dad and brother to accept Christ. They are NOT Christians.
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