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Nina has been diagnosed with a rare case of Stevens Johnson Syndrome called Toxic Epidermal Necrolysis (TEN). She nearly lost her eyesight and her life. If it were not for her parents stepping in and getting her to a burn center, her current doctors say she would have passed. About 85% of her body is covered in burn-blisters, which meant she had to undergo a very painful surgery to remove what they could.
In order to help with the costs of these medical bills, the Path Family is starting this Go Fund Me page. Any and all help that you can offer is greatly appreciated. Thank you so much for all the love and support the family has received thus far.
If you want to hear more about what happened, please read below some of Peter’s first story from June 20th. Additionally, if you want to hear updates on Nina’s condition, you can follow Peter’s updates at the following site: https://www.caringbridge.org/visit/ninapath/journal.
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Last week Nina called mom and I and said that she was not doing well and was really scared. So dad and mom to the rescue. Well she was very weak, her eyes were running, and her lips were swelling. So off to our local hospital. They gave her some eye drops and an antibiotic. They gave her one dose and gave us a prescription, and said to go home and rest.
So after getting her home and in bed, off I went to fill the order. When I got back, Nina started to show a rash and her eyes were starting to shut closed. Oh shit - back to the ER. They pumped her with some more of that shit that was giving her this fast reaction. By the time they let myself and Eleanor see her she was covered full-blown with blisters. About 85% of her body.
There was an eye surgeon in the cafeteria that overheard some staff talking about Nina’s condition and said take me to her NOW! He put some large contacts made from a baby’s umbilical cord over her eyes, and told us to throw those terrible sulfate drops away. We found out later that he saved Nina’s vision. One of the problems with this disease is that it causes blindness---and 50% mortality rate. So thank god for that surgeon and the scuttlebutt in the mess hall.
So now it is night time and Papa Bear is getting pissed off with the little understanding of what is happening. So I got on the phone and started calling my peeps. I had to leave the hospital (only one visitor per room). El stayed to fight off the onslaught of people trying to give her more of that shit. Momma Bear was on guard.
Nina’s uncle, Dr. Mark Benadyk, started working on the case to find out what this could be. I took photos prior to leaving that night. We are so lucky to have another family friend, Dr. Tom Sugerman. He looked at the photos and said to get her to a burn center asap! By this time, Nina was shaking so bad from pain and a fever of 103.
I finally got the hospital to give her some dilaudid and prep her for transport (the gal that did that was wonderful and quick). So off to Saint Francis Memorial Hospital in San Fran at the Bothin Burn Center. Nina’s doctor at the burn center, Dr. Grossmen, is a plastic surgeon who specializes in burn-blisters, burns, etc. So right away, what a difference in care and professionalism.
The Bothin Burn Center has about 14-16 beds, all private, specialized burn rooms with a very large staff. Wow. After we get there, one person per day for one hour can see Nina. That’s the strict rules. So I went in to see Nina. She grabbed my hand and said that this is the first time I have no pain. Well, Papa Bear lost about a gallon out of his tired eyes. You could say I kind of broke down.
So with all of the background that I could tell the doc, some blood work, and a biopsy, they came to the conclusion that Nina has a very bad case of Stevens Johnson Syndrome. She has a rare case called Toxic Epidermal Necrolysis (TEN).
Yesterday, Nina went through surgery to remove the sloughing dead skin that they could remove. A very very painful operation. They basically brush off, cut off, pick off what they can on the outside layer. But remember there’s still the inside layer (like her throat, stomach, any internal skin that has a mucous membrane). Yes – it’s inside the body as well.
So today is Friday and I got to talk to the doc and see Nina. The doc said that my throwing a fit at the first hospital saved her life. Today, Nina has a feeding tube down her nose and they removed her suction tube from her lungs. GREAT IMPROVEMENT. Now Mama Bear and Papa Bear feel that Nina is looking way better.
She still has a fever of 103, but they got that down pretty quick to 101. And now she needs to stay germ free from all this raw skin.
I will update her progress daily on our Caring Bridge site to let you all know (https://www.caringbridge.org/visit/ninapath/journal). And I'm going to have to set up a Go Fund Me page as well. Thank you sooooo much for all the love and support that the Path Family has received
In order to help with the costs of these medical bills, the Path Family is starting this Go Fund Me page. Any and all help that you can offer is greatly appreciated. Thank you so much for all the love and support the family has received thus far.
If you want to hear more about what happened, please read below some of Peter’s first story from June 20th. Additionally, if you want to hear updates on Nina’s condition, you can follow Peter’s updates at the following site: https://www.caringbridge.org/visit/ninapath/journal.
--------------------------------
Last week Nina called mom and I and said that she was not doing well and was really scared. So dad and mom to the rescue. Well she was very weak, her eyes were running, and her lips were swelling. So off to our local hospital. They gave her some eye drops and an antibiotic. They gave her one dose and gave us a prescription, and said to go home and rest.
So after getting her home and in bed, off I went to fill the order. When I got back, Nina started to show a rash and her eyes were starting to shut closed. Oh shit - back to the ER. They pumped her with some more of that shit that was giving her this fast reaction. By the time they let myself and Eleanor see her she was covered full-blown with blisters. About 85% of her body.
There was an eye surgeon in the cafeteria that overheard some staff talking about Nina’s condition and said take me to her NOW! He put some large contacts made from a baby’s umbilical cord over her eyes, and told us to throw those terrible sulfate drops away. We found out later that he saved Nina’s vision. One of the problems with this disease is that it causes blindness---and 50% mortality rate. So thank god for that surgeon and the scuttlebutt in the mess hall.
So now it is night time and Papa Bear is getting pissed off with the little understanding of what is happening. So I got on the phone and started calling my peeps. I had to leave the hospital (only one visitor per room). El stayed to fight off the onslaught of people trying to give her more of that shit. Momma Bear was on guard.
Nina’s uncle, Dr. Mark Benadyk, started working on the case to find out what this could be. I took photos prior to leaving that night. We are so lucky to have another family friend, Dr. Tom Sugerman. He looked at the photos and said to get her to a burn center asap! By this time, Nina was shaking so bad from pain and a fever of 103.
I finally got the hospital to give her some dilaudid and prep her for transport (the gal that did that was wonderful and quick). So off to Saint Francis Memorial Hospital in San Fran at the Bothin Burn Center. Nina’s doctor at the burn center, Dr. Grossmen, is a plastic surgeon who specializes in burn-blisters, burns, etc. So right away, what a difference in care and professionalism.
The Bothin Burn Center has about 14-16 beds, all private, specialized burn rooms with a very large staff. Wow. After we get there, one person per day for one hour can see Nina. That’s the strict rules. So I went in to see Nina. She grabbed my hand and said that this is the first time I have no pain. Well, Papa Bear lost about a gallon out of his tired eyes. You could say I kind of broke down.
So with all of the background that I could tell the doc, some blood work, and a biopsy, they came to the conclusion that Nina has a very bad case of Stevens Johnson Syndrome. She has a rare case called Toxic Epidermal Necrolysis (TEN).
Yesterday, Nina went through surgery to remove the sloughing dead skin that they could remove. A very very painful operation. They basically brush off, cut off, pick off what they can on the outside layer. But remember there’s still the inside layer (like her throat, stomach, any internal skin that has a mucous membrane). Yes – it’s inside the body as well.
So today is Friday and I got to talk to the doc and see Nina. The doc said that my throwing a fit at the first hospital saved her life. Today, Nina has a feeding tube down her nose and they removed her suction tube from her lungs. GREAT IMPROVEMENT. Now Mama Bear and Papa Bear feel that Nina is looking way better.
She still has a fever of 103, but they got that down pretty quick to 101. And now she needs to stay germ free from all this raw skin.
I will update her progress daily on our Caring Bridge site to let you all know (https://www.caringbridge.org/visit/ninapath/journal). And I'm going to have to set up a Go Fund Me page as well. Thank you sooooo much for all the love and support that the Path Family has received