This is such a roller coaster UPDATED

bobcatsteph · November 2011

My update didn't show up. We're leaving the hospital now because they are paralyzingly her for 12 hours and they don't want anyone touching or talking to her while her body hopefully heals enough to go back to the regular ventilator. We should know after 3am which direction she will go.

First, thanks for all the good thoughts and prayers. She's stable for now. Her oxygen levels started dropping rapidly this morning and they had to move her to a stronger ventilator and sedate her. They don't know what caused the levels to drop so they're treating her for several different things in hopes that the levels will go back up and she can move back to the regular ventilator. If her condition doesn't improve soon (she can't stay on this ventilator for long) there's nothing else they can do.

So, there's still hope! I'm being optimistic and the rest of the family is trying to be also.

rssnlvr · November 2011

Many prayers still coming.

amyliisa · November 2011

rssnlvr:
Many prayers still coming.

Same here. I'm sorry it's such a roller coaster, but glad you all are remaining hopeful. I am too!

Mrs.Froggianna · November 2011

I'm glad there's still a reason to be optimistic! Loads of good thoughts and prayers coming her way.

Mrs.Purdue · November 2011

ditto all the others... so glad there's still hope. prayers sent up.

2bmrslove · November 2011

Still thinking, praying and sending good thoughts your way.

Kitkatishbakk · November 2011

This is a longstretch, and not approved by the FDA, but it may be something your family considers. I work with hyperbaric oxygen therapy and we have people call us all the time to consider their family members for HBO. Because we are a Joint Commission facility, we cannot treat something unless approved by the FDA.

There are a lot of sites/activists/studies out there for HBO & hypoxic brain injuries. A quick google resulted in this: https://www.our-kids.org/Archives/HBO.html . I don't know which hospital she is in, what therapies are available, and may not be something they would consider - but I thought I would throw it out there.

ditzydi_2000 · November 2011

I'm glad that ya'll are staying optimistic. Hopefully that little girl is fighting because she knows ya'll are there trying to stay positive. When I read your first post that the doctors weren't as optimistic, I hoped that she would show signs of improvement to prove that doctor wrong. Hang in there! Positive vibes going your way.

AdamsKitten · November 2011

Lots and lots of prayers heading your way!

txbabs111 · November 2011

So glad there is still hope. Continued T&P coming your way.

bobcatsteph · November 2011

Kitkatishbakk:
This is a longstretch, and not approved by the FDA, but it may be something your family considers. I work with hyperbaric oxygen therapy and we have people call us all the time to consider their family members for HBO. Because we are a Joint Commission facility, we cannot treat something unless approved by the FDA.

There are a lot of sites/activists/studies out there for HBO & hypoxic brain injuries. A quick google resulted in this: https://www.our-kids.org/Archives/HBO.html . I don't know which hospital she is in, what therapies are available, and may not be something they would consider - but I thought I would throw it out there.

Ive been doing research about this. It looks like its pretty pricey and not covered by insurance. Does that sound right?

carlinlp · November 2011

I have a two friends who have HBOT and from talking with them I think you are correct. It isn't cheap or covered by insurance but both really felt it was valuable and worth the money spent. If it were my child I would try in a heartbeat.

Continued prayers.

A&R2006 · November 2011

2bmrslove:
Still thinking, praying and sending good thoughts your way.

Ditto.

intheatx · November 2011

Continued t&p for the whole family.

thethomps · November 2011

I am keeping her in my prayers. I hope she stabilizes soon. **HUGS** to your family.

Kitkatishbakk · November 2011

bobcatsteph:
Kitkatishbakk:
This is a longstretch, and not approved by the FDA, but it may be something your family considers. I work with hyperbaric oxygen therapy and we have people call us all the time to consider their family members for HBO. Because we are a Joint Commission facility, we cannot treat something unless approved by the FDA.

There are a lot of sites/activists/studies out there for HBO & hypoxic brain injuries. A quick google resulted in this: https://www.our-kids.org/Archives/HBO.html . I don't know which hospital she is in, what therapies are available, and may not be something they would consider - but I thought I would throw it out there.
Ive been doing research about this. It looks like its pretty pricey and not covered by insurance. Does that sound right?

I know how much WE charge insurance companies, and yes....it is a lot. I do know that "off-label" facilities that treat non-FDA approved diagnoses charge far less....but they generally do not treat to the same atmospheric depth that we do because it isn't necessary. I also don't think their treatments are as long. We treat at 2.0-2.8 atmospheres and I think they do 1.2-1.4 atmospheres. ETA: a lot of insurance companies will approve off label use if medically necessary and if they have commercial insurance (non Medicaid, non Medicare)....bonus if its tricare. They approve almost anything.

JenniferL923 · November 2011

Gosh this is nuts. Continued t&p for her.

HSartteach · November 2011

I will also be optimistic for her!

fjaril · November 2011

Still sending good vibes. *hugs*

Nikison · November 2011

Your family is in my prayers. I hope that the next twelve hours provide the miracle this little girl deserves.

Taytee · November 2011

I'm sorry there is so much uncertainty to all this =( Not knowing is so very difficult.

*hugs*

burntorangetang · November 2011

T&P for her and your family!

A&Jmom · November 2011

continued positive thoughts for your niece!

spideyswifey · November 2011

Steph, I am thinking and praying hard for you, your family and your niece. I am so, so sorry and cannot imagine the heartache that everyone is going through. If there is some way I can help please let me know, I am not far from Buda.

mrs.wildman · November 2011

I can't imagine what your family is going through. Sending lots of thoughts and prayers your way!!

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