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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THANK YOU, FREEPERS, for your continued prayers!!!

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First, THE GOOD NEWS:
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(1) NEW TRACHS ARRIVED - COMPASSIONATE ENT DOCTOR
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I got a call from a VERY compassionate, female ENT Doctor Monday afternoon. She said Stephanie's new, custom-made trachs were in. She also said that she was ready to put one of the new trachs in, and that if we wanted to be there when she put it in and could get to the hospital fairly quickly, she would wait for us to get there. Otherwise, she could do it without us there, or could wait until Tuesday, when we could be there.

We told her we would come right then and we left for the hospital immediately.

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(2) ENT DR INSERTED NEW TRACH & WAS PLEASED
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The ENT Doctor got the new trach in and positioned Stephanie with her shoulders raised up some and her head cocked back over the pillow. Stephanie actually likes her head slightly cocked back over the top of her pillow when she is sleeping, although she was positioned with a bit more tilt than we usually have her.

The Doctor said that she was pleased with the new trach and that it went in without a problem.

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(3) NEW TRACH IS SINGLE-PIECED & MORE FLEXIBLE
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The ENT Doctor had showed me what the new trach looked like before she put it in. It was a straight, flexible, single-pieced, clear-tubing trach. The first one was a curved, firm plastic, two-piece trach, with a white base and a clear, removable inner piece.

The idea was that with the flexible tubing, it would be less positional, making it less likely it occlude. I have a concern, however, that with it being straight, but flexible, it may NOT want to curve as much as needed, WHERE a curve is needed.

PLEASE PRAY that the new trach WILL curve as as MUCH as needed, WHERE it is needed.

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(4) TRACH ID NOW 6.0 MM, NOT 4.0 MM --> MORE AIR FLOW
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The new trach is 6.0 mm ID, whereas the first one was only 4.0 mm ID (to keep from having a trach too long for Stephanie's almost non-existent neck). Now, more volume of air/oxygen can pass through the trach, enabling them to adjust the ventilator's settings accordingly.

PLEASE PRAY that the 6.0 trach will enable Stephanie to be able to get sufficient air/oxygen and that she can SAFELY be weened from the ventilator (although not too hastily).

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Now, THE BAD NEWS:
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(5) NEW TRACH IS ALSO POSITIONAL, BUT NOT AS MUCH
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I called the hospital a couple of hours ago and Stephanie's nurse said that the new trach is also positional, but not as much as the first trach.

It is my understanding that as long as Stephanie was completely under the paralytic and sedative (i.e. not moving) when she first got the first trach, they did not have a tremendous amount of problems with the positioning. It is also my understanding that it was not until the first trach had been in for a while (and after they had reduced some of the sedative/paralytic meds), that the positioning really started being more of a problem.

PLEASE PRAY that the new trach will work well for her and NOT occlude, i.e. that it will NOT be positional, requiring CONSTANT, 24/7 watchful care to make sure it doesn't occlude.

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(6) SWELLING INCREASED AGAIN AFTER NEW TRACH
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I have been taking daily photos of Stephanie, and of her contemporaneous ventilator settings and monitor numbers, and recording her daily blood-gas readings, so that I can look back and compare how she looks every day with her settings and blood-gas numbers.

At 10:23 PM, Saturday night (07/11/2009), Stephanie was the most swollen she had ever been. Her face was VERY bloated and her tongue was VERY swollen and was REALLY sticking out. By that time, she had been getting a steroid and a sigificantly increased amount of fluids, trying to get her urine output to increase. Her tongue is really too big for her mouth normally and sometimes sticks out a little. However, it had been sticking out significantly since being trached.

By 11:36 PM, Sunday night (07/12/2009), after having gotten Lasix (and I think the newly-added steroid had, by then, been stopped), her facial bloating and tongue size and thickness had significantly reduced in size and it was not sticking out nearly as far. I think they cut back on her Lasix shortly thereafter, but I am not sure.

By 10:16 AM, Monday morning (07/13/2009), her face was noticeably redder and bloated again, along with her eyes and tongue, although just 15 minutes later, she looked noticeably improved.

By 5:46 PM, Monday afternoon, immediately after the trach was put in, Stephanie was even more bloated than the worst up until then. Her left eye was swollen shut and the Nurse could not even open it to check her pupil on that side. Part of it can be explained by the left side of her head having been facing down since she got the first trach. However, after the trach was changed, her shoulders were propped up and her head was tilted back some, yet her entire face and eyelids were VERY swollen.

I called the Nurse back just a little while ago and she said Stephanie's eye swelling had come down some and she was able to check her pupils.

PLEASE PRAY that Stephanie's swelling will GO DOWN and STAY DOWN.

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(7) VANCOMYCIN RESUMED FOR MRSA
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I had been told that the Vancomycin had been discontinued. My understanding was that it was due to the THREE NEGATIVE tests for MRSA.

I found out Monday, that the Vancomycin had only TEMPORARILY been stopped because the amount in her blood was too high. They assume that once you have had it, you will ALWAYS have it in your body.

They don't seem to think now that there even could have been a false positive or contamination.

PLEASE PRAY that Stephanie can quit needing to have Vancomycin (because there's no more MRSA infection).

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(8) GOOD HAND WASHING---AND RINSING--ARE ESSENTIAL!!!
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Prior to the MRSA detection, I don't think ANY of the personnel WASHED THEIR HANDS WITH SOAP AND WATER prior to coming in to work on Stephanie.

While Stephanie was in the ICU the first time---and with NO INFECTION OR MRSA---I NEVER saw ANYONE wash with SOAP AND WATER!!! I even made a comment that I did NOT feel comfortable with them ONLY using the alcohol-based hand-cleaner prior to touching Stephanie.

I also commented that the REASON I do not like its use is that although 99.99% of the germs are PURPORTEDLY killed, 0.01% are NOT!!! And they are STILL ON YOUR HANDS!!!

And just like if they change a dirty diaper or work on an infected wound and then use the alcohol-based cleaner instead of WASHING & RINSING OFF THEIR HANDS...WHERE IS THE RESULT?...STILL ON YOUR HANDS!!!

I am CONVINCED that the FAILURE to WASH & RINSE your hands is **THE** REASON for MRSA being so widespread in hospitals!!!

Even the BIBLE says to WASH WITH WATER (and I think I recall seeing that it needs to be RUNNING WATER, i.e. having someone pour clean water over your hands as you wash them---to get the stuff OFF of your hands).

REQUEST: If anyone knows if and/or WHERE it says something about using RUNNING water to wash in the Bible, PLEASE CITE the Chapter and Verse. Thanks!!!

PLEASE PRAY that the personnel will continue to WASH & RINSE their hands in RUNNING WATER, even after Stephanie gets out of isolation.

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(9) THANKS AGAIN, FREEPERS, FOR YOUR CONTINUED PRAYERS!!!
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