URGENT PRAYERS NEEDED - DAUGHTER ON RESPIRATOR, NOW HAS MRSA (Update at #263)

My daughter, Stephanie, is on a respirator and nasal feeding tube in the ICU at our local hospital. She was admitted to the hospital on 06/07/2009, after having a seizure that lasted over an hour. She had several shorter ones back-to-back after admission. We were told today that she now has MRSA.

I have written about her before. She is a severely mentally and physically disabled 24 year old, who does not walk, talk, or feed herself. She wears diapers and has a very rare type of dwarfism, so she is only 36 inches tall. She will be 25 years old on 07/27/2009, assuming she lives through this ordeal.

When she was about 9 months old, she had to be trached and on a respirator, with a feeding tube, for a little over 3 years, because her rib cage was significantly deformed and not large enough to allow her lungs to fully expand.

The VERY progressive Doctors we had thought that if she could be trached and ventilated on a respirator, the positive pressure from the respirator pushing her lungs out to hit her rib cage would stimulate her rib cage to grow over three years---and it DID, significantly!

We had an ICU in our home, with round-the-clock nursing. Eventually, she no longer needed either the Respirator or feeding tube.

Because of her respirator-enlarged rib cage, from about age five until probably age 20 or so, she was basically like most kids as far as getting sick was concerned. No major medical problems during that time.

Then suddenly, she started having seizures, especially after we got her out of the tub and she was still a little wet. For some reason, her ability to deal with temperature regulation went haywire and she began having febrile (i.e. sudden, major temperature-drop) seizures. She also started having them with strobe light effects, e.g. when a fan was beneath lights and the fan "cut through" the path of light.

Since we had taken Stephanie on many trips during her lifetime, my husband and I decided to take our younger daughter on a cruise to Alaska via Vancouver, leaving Stephanie in the hands of the agency which regularly helps us care for her at home.

We had just gotten off the ship and were back in Canada when we got the call about Stephanie going to the hospital. We got back asap.

We just okayed the Doctor to have her trached again and to have a feeding tube put in again. The trach may be temporary, but she aspirates when she gets anything by mouth. And now, she has to also fight off MRSA.

PLEASE PRAY FOR HER HEALING AND RECOVERY and to guide the Doctors' hands and for us to make the right decisions.

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------------------- UPDATE - 07/12/2009 ----------------
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Original post: http://www.freerepublic.com/focus/f-news/2283778/posts
1st Update: http://www.freerepublic.com/focus/f-news/2283778/posts?page=181#181 =====================================

THANK YOU all for your prayers!!!

MORE PRAYERS ARE NEEDED!!!

BTW, I'm sorry I have not been able to keep you updated as much as I would have liked, but I have been spending a lot of late nights at the hospital and am exhausted when I get home. Plus, my computer quit working properly prior to our vacation and I only have a dinosaur computer to use and it overheats and slows to a crawl.

First, the GOOD News:

Stephanie has now had four cultures for MRSA. The first showed she had MRSA in her blood. The subsequent three have been negative, and they have discontinued the Vancomycin, the only antibiotic strong enough to get rid of MRSA.

So, EITHER: (1) she DID NOT have MRSA in her blood in the first place and the first test was contaminated and gave a false positive, (2) she DID have MRSA and the Vancomycin worked EXTREMELY quickly (they told it was likely 8 WEEKS on Vancomycin to get rid of it), or (3) she DID have MRSA and the INCREDIBLY FAST PRAYERS by FReepers to eliminate the MRSA were answered favorably, as asked for. I believe it was the latter. THANKS FREEPERS!!!

Now, the BAD News:

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(1) TRACH OCCLUDES EASILY - NEEDS CUSTOM-MADE TRACH
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Stephanie got her trach on Friday, 07/03/2009. Unfortunately, Stephanie has a very rare type of dwarfism and her neck is EXTREMELY SHORT---almost non-existent. Trachs are made for a person of average stature, so the one that SHOULD have fit her according to her chronological age was TOO LONG and would have hit the place where the lungs separate into two (I can't think of the name right now).

To get a trach that was short enough for her, they put in a trach which is NARROWER than what she needs and it WIGGLES AROUND and OCCLUDES VERY EASILY. They are having to keep her heavily sedated and under drug-induced paralyzation because it is VERY POSITIONAL and can occlude with hardly ANY movement. It has actually occluded at least a time or two with NO movement!!!

Her now "regular" Doctor (i.e the one who has only "known" her since her admission to the hospital) is a Pulmonologist, but he left town for TWO WEEKS!!! His partner ordered two CUSTOM-MADE TRACHS several days ago, but they have not arrived yet.

PLEASE PRAY that one or both of the custom-made trachs will work for her, so she can SAFELY get OFF the sedation and paralytic.

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(2) "REGULAR" DOC OUT OF TOWN - DON'T CARE FOR PARTNER
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That partner is the Medical Director, but I don't care for him very much. He DOES NOT seem to value the life of a special needs child!!! My husband stated it pretty accurately: "He gets an "A" for candor, but an "F" for diplomacy!"

When he called us in for the conference to tell us about the MRSA, he basically told us we should "pull the plug" (although he did NOT use that wording) and asked "would YOU want to live that way" (implying that her life isn't worth living).

Yesterday morning, I put up more than a dozen photos of her and our family---on trips, at parks and sitting in the water on the beach of the Gulf of Mexico. I wanted Stephanie's Doctors, Nurses and other caregivers to understand that although she doesn't walk, or talk per se (although she CAN make some sounds and she actually said "Mama" DURING her hospital stay), she DOES have a life and ENJOYS outings.

That Doctor has NO idea that she is VERY LOVING and has been on MANY trips with us around the state and country (and once to Canada!). She LOVES to travel and "swim" (i.e. us holding her up in a swimming pool and walking around with her) and to "walk in the water" on the steps of the pool.

PLEASE PRAY that the partner Doctor will VALUE Stephanie's life and work to ensure that she FULLY RECOVERS.

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(3) INFECTION IN LUNGS/NOSE - STILL ON 3 ANTIBIOTICS
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Stephanie remains on THREE other antibiotics for infection in her lungs and nasal passage.

Note that Stephanie had NO infection when she went into the hospital---just a VERY long-lasting seizure (with a couple of subsequent smaller ones back-to-back), and aspiration pneumonia from breathing in saliva during the seizure.

IIRC, they had actually gotten rid of her aspiration pneumonia completely by the time she had been transferred from the ICU to the regular floor (before she got transferred back to the ICU). She already had gotten an "NG" tube put in to be able to put liquid food directly into her stomach, bypassing her mouth.

Then, they wanted to try feeding her by mouth for some reason and she aspirated again---twice!---because she was still sick and also needed Bi-Pap, which forces air (or food/liquid in your mouth) into your lungs as you take a breath. She has been REALLY SICK and back in the ICU ever since!!!

PLEASE PRAY that Stephanie will get over ALL infections.

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(4) EXTREMELY BLOATED/SWOLLEN - RETAINING FLUIDS
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Shortly after Stephanie went back into the ICU (and purportedly attained MRSA), she has become EXTREMELY BLOATED/SWOLLEN. For some reason, she cannot seem to get rid of fluids on her own. The Doctors do not seem to know if she possibly has a bladder/kidney/urinary tract infection.

The Doctor had started giving her Lasix to get the urine flow to increase. It had slowed down DRASTICALLY and was VERY dark (and cloudy at one point). The Doctor gave her Lasix and it was working. I do not know why he stopped it. I think it started working TOO well---i.e. getting much more fluid out than what was coming in. He put her on a STEROID, and it seems to have made the problem WORSE, NOT BETTER!

I have NEVER seen Stephanie so bloated and swollen---EVER!!!

PLASE PRAY that Stephanie's bladder/kidneys/urinary tract are not infected and that her EXTREME swelling/bloating will go away quickly.

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THANKS AGAIN, FREEPERS, for your prayers!!!

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