Update on Sandra Wednesday February 4th

 For those that don’t know, Sandra is in the hospital with a serious condition called Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN) and had surgery yesterday (Tuesday).  She’s doing very well and the prospect looks good for a full recovery.  That’s the short story.  I thought I would write an email sort of documenting the whole story as this has progressed day by day.  I think Esther has sent some people email and maybe others have too, but I thought I’d also send one with as much detail as I can come up with so that people might know the exact details.  It’s scary, but I’d rather every one know the exact story rather than get overly scared or whatever.  Feel free to forward to family and friends that are worried.  I can’t think straight enough to come up with many email names right now.  I hope Sandra isn’t embarrassed by everyone knowing, but I know everyone is worried and need to know.  Here is the long story:

 

This started last Thurs when she wasn’t feeling too good and started to have a mild fever.  She went to work late on Friday (which I thinks meant going to work at the time that most people do instead of an hour or so earlier) taking ibuprofen and came home right after school (again, “early”) feeling crappy. 

On Saturday a digital ear thermometer was getting readings of 104, 105 and even 106 (once) – we debated the accuracy but called the 24 hour nurse who told us to take her to the urgent care clinic which is open weekends which we did I think around noon.  I think she had 103 or 104 temp when we got there and she was pretty miserable.  They gave her an IV (two bags) to get her fluids up and were concerned about high heart rate and low blood pressure, which they attributed to low fluids.  We were there for 4 or 5 hours by which time her temp was normal as was heart and blood pressure.  They were concerned about infection and took blood and other tests but all came up negative.  They guessed she had the flu and took a sample to test for that but said we wouldn’t know for a day or so.  90% sure it’s flu, is what they, and we, thought.  We worried the baby might catch it.  She didn’t want to take ibuprofen because it gave her a stomach ache.  They told her to drink lots of fluids and to take Tylenol for the fever which I went to the store and bought late Sat night and she took before bed.  She said she hadn’t taken it for years, maybe never.

 

Sunday morning her face was sort of swollen.  Especially her eyes and around her lips.  We thought she might be having a reaction to the Tylenol, which she had taken again right when she got up.  By noon or so it had gotten a little worse and I think she had a blister on her lip then also.  She called 24hr nurse who said to go to urgent care again.  No way, she said.  She was cold all the time and very uncomfortable and the idea of getting in the cold car, the waiting room, the poking and prodding – she didn’t want to deal with it.  I tried to prod her into going, pointing out that people might call her “fatty face” if she didn’t take care of it, which we laughed about, but she didn’t want to go.  I didn’t blame her.  She spent the afternoon in bed.

 

Around 5 or 6 she was up and now had blisters pretty much covering her lips.  I think her face was getting red, like the hives, but I can’t remember when exactly that started.  Let’s go to urgent care she said.  Nicole and Joel came over to watch the baby and off we went.  When we were checking in, at 7:30, I thought I saw a tear on her face and soon realized it was a water blister.  By 11:30 they had (correctly) diagnosed it as something called Stevens-Johnson syndrome and sent us to Virginia-Mason where a bed was waiting.  Stevens-Johnson is an allergic reaction to medication, basically, and a medication she had been taking is very high on the list of potential causes.  I feel sure that this was the cause.  Stopping that medication was/is the most important thing.

 

The blister on her cheek was now quarter sized and she felt one break inside her mouth as well, where she felt others also.  They had taken a biopsy off her cheek which was covered with a band-aid.  I drove her to Virginia Mason and she got settled in the room.  They said there is no real treatment of the syndrome itself, that the main thing was to stop the cause (last dose taken was Sat night) and that they would treat the symptoms as much as possible, which mostly meant a form of steroid as an anti-inflammatory as well as something for the pain.  I went home around 1, I think. 

 

Monday morning, I took the baby to day care and went to the hospital around 9:30.  She was much worse.  Her entire face was totally red and she had red specks all over her chest and upper back.  They took the band-aid off her cheek and the skin came off with it.  She had more blisters on her face and I think one on her upper arm, which had burst, by now also.  They basically tried to keep her comfortable and she wanted ointment on her lips a lot.  She has trouble sleeping normally and they said the steroid would make it hard to sleep also.  Often being in the hospital means only sleeping for an hour here or half hour there, which was the case for her I think, and so she was pretty miserable.  She would apologize to the nurses for being grumpy at times.  She would also crack jokes or make wise remarks and make us all laugh.  Her personality was very intact through this whole thing.

 

Her sister Esther and Eddie and nieces Ellen and Rachel came to see her mid-day Monday.  They had read about Stevens-Johnson the night before and that morning, I guess, and we all read the info the staff gave us and Eddie looked up info on the internet.  I read the info-sheet to Sandra out loud, the highlights of which were statements like “you will lose your skin.  You may permanently lose your fingernails and hair.  Blindness can occur.  You may die.”  So that was cheerful.  At this point, as well as at the clinic at the point of the initial diagnosis, everyone felt good that this was caught early and that the cause had been immediately stopped, which doesn’t always happen.  There is a large range of possible effects from this syndrome and we were always wondering where she would be on the scale of severity and hopeful that since it was caught early that she would be on the mild end.  Everyone said – then and now - that she is young and otherwise very healthy and strong, so her chances are very good.  It impacts mucus membrane and inside and outside your skin, so her mouth and throat and places like the insides of her eyelids as well.  The worst cases are people with other health issues, especially immune-deficiency as well as the elderly.  Of course you want to know about the “you may die” thing.  Consensus is that it’s complications that kill (infections, things like pneumonia, etc.) and her youth and general good health again mean she should be OK.  But it’s a serious illness and some doctors are frank that it still has the potential to be deadly.  It’s serious.  Check.  Got that.

 

By Monday afternoon it seemed to me like she wasn’t getting much worse, that it wasn’t spreading much more.  I had to get the baby from daycare in the afternoon and wanted to talk to a doctor which I ended up doing by phone.  I wanted to know what they thought of her condition at this point.  How much skin was she likely to lose? Just the blistered area, or everywhere it was very red?  How long should we expect the recovery period to be?  Sandra was disappointed to hear she wouldn’t be able to go back to work on Wed(!)  I convinced her she would need a sub for at least the whole week, which I think she knew but didn’t want to accept.  The doctor said she’d only loose the blistered skin and that she’d likely be in the hospital for a week or so, with maybe another week of recovery.  She agreed that it looked like she had stabilized and that hopefully it was no longer progressing.  I went home worried but hopeful and tried to make it a normal night at home with Adriana. 

 

Back at the hospital Tues morning Sandra looked much worse.  It was still progressing.  The red spots on her back and chest were now a solid block of dark red like her face.  Her ears had blistered and broken open.  Her eyes were really killing her.  The nurse was putting cold wet rags on her eyes trying to ease the pain there.  We learned that her cornea were scratched - the inflammation makes them rub against the eyelids and get scratched, I was told.  They were putting cream on her skin but it was making her hot (or maybe raising body temp, I don’t remember – anyway it wasn’t what they wanted).  The nurse said they were considering moving her to the burn ward at Harborview where they were much better equipped to deal with severe skin issues such as this.  Seemed like a great idea to me.  I talked to Esther and she felt the same way.  Soon an ambulance came and took her to the ER at Harborview.  Eddie and Ester just got to Virginia Mason in time for Esther to ride in the ambulance to Harborview with Sandra.

 

At Harborview they know their shit man.  In the ER there was a lot of action and they don’t screw around.  Very good doctors, they are very straight and let’s say action oriented, as is apparent in what happened next.  That said, she was examined by dermatologists and doctors including the one who ended up doing the surgery.  He started poking at her skin a bit and it would just move in the bad places (chest, upper back, face) – fall away, basically like a bad burn leaving a bright red wet looking skin-less spot.  This was really hard to watch and I had a very hard time.  Sandra was like “hey, HEY THAT HURTS” and they apologized but said they had to do it.  Then the surgeon laid it on the line.  Sandra, we need to take you to the OR.  We need to shave your head because you may have loose dead skin under your hair also.  We need to remove all that dead loose skin.  We will cover you with bovine skin – pig skin.  (Which is it?  Cattle skin or pig skin?  I still don’t quite get that.)  Your skin will grow back under this layer of bovine skin and it will protect you from losing fluids and electrolytes as well as keeping out infection.  It will fall off once your new skin grows in underneath it.  It’s like a fancy, sophisticated bandage, basically.  We are concerned about your breathing and your throat as it is likely inflamed and we don’t want it to close up.  We will put a breathing tube down your throat and a feeding tube through your nose and you may be heavily sedated for 2-3 days.  Sandra, do you have any questions?

Sandra:  Wow, you people don’t mess around, do you?  OK.  Yes, I have a question.  What’s up with Virginia Mason?  They’re all “tube of cream”.  Let’s give you a tube of cream.  You’re all “let’s shave your head and scrape all your skin off and cover you with bovine skin.  What’s up with that? 

She had everyone in the room laughing, (which maybe slowed down my crying some).  She also asked if people would call her “cow face” or “cow head” or something.  I don’t think she got a definitive answer to that. 

 

I remember she had the admitting doctors in the ER laughing too when she first got there, but I don’t remember what she was saying.  Maybe Esther does.

 

Soon she was going into the ER.  Esther and I were with her just before she went in.  Immediately before she was wheeled in she was apologizing to the nurse (or maybe the anesthesiologist?) for being grumpy again.  I mean, her lips were raw, skin literally falling off in places, hate to tell you Sandra but you didn’t exactly have the look of a terribly cheerful and joyous person.  The guy said something like “oh, I’m sure I’d be just as grumpy as you are if I were in your situation”.  Sandra said “yeah, but I just started my period too!”.  We all cracked up.  He didn’t have an answer for THAT one.  She said she loved us and was rolled into surgery.

 

The surgery went very well.  I asked some pointed questions to the surgeon about worst-case scenarios and long lasting and/or permanent effects.  The bottom line is that the chances are very good for a full recovery with no permanent damage.  Unlike a burn victim (or many burn victims with this extent of skin damage, anyway) it’s only her epidermis that is effected and it should grow back relatively quickly, like in a week or 2.  And her dermis is fine, which is where her hair follicles are, so her hair should be fine.  They are concerned about her eyes (“blindness may occur”, I had read) and can’t know until much later when a full eye exam can happen, but most likely her eyes will heal and be fine, likely 20/20.  I asked if we knew if it had stopped progressing and if not, when it might stop.  He said generally 4 or 5 days (total) is how long it progresses and it’s been maybe 2.  They would check her in the morning and if it had progressed further would not hesitate to take her back in for more surgery (skin removal, applying bovine skin).  He thought this was likely the next day, maybe even for 2 days, probably not a 3^rd but it was possible. 

 

Harborview.  These people don’t screw around.

I guess they call it SJS if it’s less than 20% or 30% of your skin that’s effected and SJS/TEN if it’s 30% plus.  The other surgeon told Esther and the family that it was 30% and the nurses have been calling it SJS/TEN or TEN last night and today.

 

Wed morning.  No surgery.  It hasn’t progressed much overnight.  GOOD NEWS!!!  There are a few small additional areas but they are small.  Oh man, I hope it has stopped progressing.  They will check again tomorrow morning but today she is stable and doing well.  She is in the burn ward in a very fancy bed, floating on a cushion of air basically.  The nurse described it like having a sheet under you but otherwise you’re like an air hockey puck, floating on air.  She is “sedated for comfort” but not totally out.  They can wake her up to ask her questions.  She responded “no” to the question of if she’s feeling any pain.  We all feel very relieved by that. 

 

Last night I talked to the nurse saying that I had the impression/hope that at this point the worst in regards to pain and discomfort was behind her.  That she would basically wake up in a few days with her skin more or less protected and growing back and that she’d be in the recovery phase and I hoped this would be better than the day or 2 prior to surgery.  She basically agreed with this.  She said the difficulty will be more with her mouth and throat which will scab and heal that way.  Her skin will not scab and will sort of have a nice recovery.  She said one difficult spot will be when they remove the breathing tube, but other than that hopefully the recovery will be much more comfortable than the last few days.  Hope so.

I’m really impressed with Harborview.  Everyone was nice at Virginia Mason, but looking back I realize that Stevens-Johnson is very rare and they didn’t really have the expertise to deal with it.  I hear 25% of the cases in the nation are treated at Harborview.  They are very familiar with it, including the nursing staff who have been really excellent.  The doctors too.  I don’t think she could be in better hands.

 

I have received many offers of support including baby sitting and appreciate it all.  Honestly I don’t need much right now and Adriana says “Uma not feeling good.  She’s at the doc-tor.” And is fine with that so far but I will try to keep things as normal as possible for her and try to be home with her in the evenings and morning, as usual, as long as Sandra is stable and all is going well.  I will not hesitate to ask for help if needed.

Thank you,

 

Willem van der Hoeven

Dead Center Cycles

Ph:  206-762-3372

Fax:  206-763-3747

www.deadcentercycles.com

Comments

[Arie]

7 p.m. here at the hospital and Sandra is still stable. Her mom just checked in on her. --Arie

[Eowyn]

Sandra,
I love you and my heart is with you, Willem and Eunhae. I'm here if any of you need anything at all.
Love, love, love, Eowyn

[Meg]

Willem -- Thanks so much for taking the time to let us all know what's been going on and that Sandra is still herself! She's so lucky to have you at her side, and we're all blessed by her sense of humor. You've been in our minds and hearts this week, here at WL, as we've waited for news!
Take care, and give her my best wishes -- Meg

[Victoria]

Will and Arie,
Thank you so much for keeping us all up to date. Love to Sandra, you and the rest of the family.
Victoria

[Christine]

Sandra,
I just read what you've gone through and I'm so glad that you're going to be okay. When you get better, let's go out for bibimbap or whatever you're up for.

[Mary]

Sandra!
I am thinking of you and Willem & Audriana and hoping that you are feeling better soon.
The Adams Family is at your disposal, if you need anything just let us know. Oliver sends big hugs to you.
XO-Mary

[Martin]

Holy effing S. Soyee, even though I hardly see you, I can't imagine the world without you. Poor egg. Thank God for Harborview. Willem, I can't imagine what you've been going through. Once things get back to normal, we're having a sixer. Love you guys.

[allison]

Sandra, we are praying for you! Hang in there, we love you. Love the Martin Family

[Liz O'Connell]

Sandra and Willem; just got news of the ordeal you have been going through. Be sure of much love and many prayers coming your way. So glad that recovery is underway and Sandra has managed to stay positive in spite of much pain and worry. When I return from our trip to Mazatlan I will check in with the WL people to see if there is anything I can do to help - prepare a meal etc. Love to all of you. Liz O'Connell and family