Posted on 07/01/2009 6:45:07 PM PDT by Concerned
URGENT PRAYERS NEEDED - DAUGHTER ON RESPIRATOR, NOW HAS MRSA.
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.
Thanks!!!
Thank you for the update. Prayers continue...
Continued prayers
THANKS AGAIN, FREEPERS, for your continued prayers.
====================================
(1) REPLACED TRACH AGAIN (OUR 3RD TRACH)
====================================
Unfortunately, the custom-made trach which was just put in on Monday (07/13/2009) had to be replaced on Tuesday with the other, longer, custom-made trach.
We are now on the THIRD trach!!! The first trach was size 4.0 mm and both too short and too narrow. The second trach was a 6.0 mm, but because it was still occluding, the ENT Doctor said it also needed to be replaced.
====================================
(2) ALARM WENT OFF 11 TIMES BEFORE HELP CAME!
====================================
The SECOND trach was setting off the alarms. Incredibly, while I was visiting Stephanie Tuesday morning (07/14/2009), the Low Tidal Volume alarm went off **ELEVEN TIMES** before I could get someone to finally come in to help.
The nurse was not at her desk, the front desk person was gone and it took "FOREVER" to get the attention of the only person at the "behind the front desk" area, to have them call a Respiratory Therapist!!!
WHAT IF I HAD NOT BEEN THERE TO CALL FOR HELP???!!! You know the answer!!!
====================================
(3) I WISH WE WERE BACK AT COOK CHILDREN'S HOSPITAL
====================================
I sure wish we were at Cook Children's Hospital right across the street!!! (http://www.cookchildrens.org/aboutus/Pages/contactus.aspx)
They KNOW Stephanie at Cook's and they have ALL of her medical records there (until this hospitalization), she has ALWAYS gone there (even well into "adulthood"), they are used to working on small patients, but because Stephanie is, chronologically, now 24 years old (and hopefully reaches 25 on 07/27/2009), her Pediatric Pulmonologist (Dr. Dyson) REFUSED to take her!!!
====================================
(4) ABANDONED
====================================
That was the FIRST TIME he ever told ME---and we had gotten no letter stating---that he would NOT continue to follow her at Cook's!!! In fact, I heard him with my own ears tell me EXACTLY THE OPPOSITE!!! He said---more than once---that he WOULD continue to follow Stephanie at Cook's, even though she was now an adult!!! And now, she is in a critical condition!!!
====================================
(5) NEED A COOK'S DOCTOR TO ADMIT
====================================
BTW, I just happened to check Cook's Doctor list and saw that the compassionate, female ENT Doctor that I REALLY like and that just put in Stephanie's two custom-made trachs, is a Doctor at Cook's!!! Maybe there is some hope with her.
====================================
(6) PLEASE PRAY FOR THE FOLLOWING
====================================
PLEASE PRAY that:
(1) Stephanie's THIRD trach WILL work for her,
(2) Stephanie WILL get OUT the gunk in her lungs, nose, & mouth,
(3) Stephanie DOES NOT have MRSA and is actually free from ALL infection,
(4) Stephanie WILL either SAFELY be able to eat by mouth again or get a G-Tube (stomach tube),
(5) Stephanie WILL be able to get a Doctor to admit her to Cook's, and
(6) Stephanie WILL COMPLETELY RECOVER.
THANKS AGAIN, FREEPERS, for your continued prayers.
====================================
(1) REPLACED TRACH AGAIN (OUR 3RD TRACH)
====================================
Unfortunately, the custom-made trach which was just put in on Monday (07/13/2009) had to be replaced on Tuesday with the other, longer, custom-made trach.
We are now on the THIRD trach!!! The first trach was size 4.0 mm and both too short and too narrow. The second trach was a 6.0 mm, but because it was still occluding, the ENT Doctor said it also needed to be replaced.
====================================
(2) ALARM WENT OFF 11 TIMES BEFORE HELP CAME!
====================================
The SECOND trach was setting off the alarms. Incredibly, while I was visiting Stephanie Tuesday morning (07/14/2009), the Low Tidal Volume alarm went off **ELEVEN TIMES** before I could get someone to finally come in to help.
The nurse was not at her desk, the front desk person was gone and it took "FOREVER" to get the attention of the only person at the "behind the front desk" area, to have them call a Respiratory Therapist!!!
WHAT IF I HAD NOT BEEN THERE TO CALL FOR HELP???!!! You know the answer!!!
====================================
(3) I WISH WE WERE BACK AT COOK CHILDREN'S HOSPITAL
====================================
I sure wish we were at Cook Children's Hospital right across the street!!! (http://www.cookchildrens.org/aboutus/Pages/contactus.aspx)
They KNOW Stephanie at Cook's and they have ALL of her medical records there (until this hospitalization), she has ALWAYS gone there (even well into "adulthood"), they are used to working on small patients, but because Stephanie is, chronologically, now 24 years old (and hopefully reaches 25 on 07/27/2009), her Pediatric Pulmonologist (Dr. Dyson) REFUSED to take her!!!
====================================
(4) ABANDONED
====================================
That was the FIRST TIME he ever told ME---and we had gotten no letter stating---that he would NOT continue to follow her at Cook's!!! In fact, I heard him with my own ears tell me EXACTLY THE OPPOSITE!!! He said---more than once---that he WOULD continue to follow Stephanie at Cook's, even though she was now an adult!!! And now, she is in a critical condition!!!
====================================
(5) NEED A COOK'S DOCTOR TO ADMIT
====================================
BTW, I just happened to check Cook's Doctor list and saw that the compassionate, female ENT Doctor that I REALLY like and that just put in Stephanie's two custom-made trachs, is a Doctor at Cook's!!! Maybe there is some hope with her.
====================================
(6) PLEASE PRAY FOR THE FOLLOWING
====================================
PLEASE PRAY that:
(1) Stephanie's THIRD trach WILL work for her,
(2) Stephanie WILL get OUT the gunk in her lungs, nose, & mouth,
(3) Stephanie DOES NOT have MRSA and is actually free from ALL infection,
(4) Stephanie WILL either SAFELY be able to eat by mouth again or get a G-Tube (stomach tube),
(5) Stephanie WILL be able to get a Doctor to admit her to Cook's, and
(6) Stephanie WILL COMPLETELY RECOVER.
Thanks for the updates, continuing to pray for Stephanie’s caregivers and improvement.
Also adding prayers for you, for her doctors, for their wisdom and decisions, for many comforts and blessings for Stephanie and all those who love her and take care of her.
Please see my latest update at:
http://www.freerepublic.com/focus/news/2283778/posts?page=264#264
Also, see the following URL for the Cook Children's Hospital, which is right across the street from where she is and to where Stephanie SHOULD have been admitted---and to where she has ALWAYS gone when sick---even as an adult---until now:
http://www.cookchildrens.org/aboutus/Pages/contactus.aspx
Hi, Concerned, thanks for the update at #263.
Prayers continue for all the issues you mention, and that you will have comfort and peace knowing that God your Creator knows all your cares and concerns before we even ask.
And hugs to you, too, with all this on your mind. Hugs also to freeper friends who join us in prayer.
I just saw that there was this update on a NEW thread, with the very sad news that Stephanie has passed away.
go to http://www.freerepublic.com/focus/f-news/2293779/posts
I just saw that there was this update on a NEW thread, with the very sad news that Stephanie has passed away.
go to http://www.freerepublic.com/focus/f-news/2293779/posts
I just saw that there was this update on a NEW thread, with the very sad news that Stephanie has passed away.
go to http://www.freerepublic.com/focus/f-news/2293779/posts
Here is the most recent update on a different thread with the sad news of Stephanie’s passing.
http://www.freerepublic.com/focus/f-news/2293779/posts
Paryers up
Disclaimer: Opinions posted on Free Republic are those of the individual posters and do not necessarily represent the opinion of Free Republic or its management. All materials posted herein are protected by copyright law and the exemption for fair use of copyrighted works.