the journey of a butterfly

khaliah's journey with sjs/ten

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The Butterfly Blog

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I hope you enjoy reading about my journey and learn more information about SJS/TEN.  

 

By Khaliah, Apr 8 2014 02:14AM

4/1/14


On another sleepless, 2 am night, I’m stuck wondering why I went through this whole ordeal. What am I supposed to learn from this? I believe that everything happens for a reason and that we are to learn some valuable life lesson through every good or bad thing that we experience. A lot of people comment on my strength through this process…but to me, I’ve felt pretty weak at times. There were weeks that I couldn’t look in a mirror without bursting into tears. I felt ugly and damaged. And for the life of me, I could not figure out why God would allow this to happen to me! Romans 8:28 says that the Lord causes everything to work together for the GOOD of those who love him…and yet this situation is BAD! This might possibly be the worse thing that has ever happened to me. But then strangely, it’s turning out to be the biggest time of growth and I’m learning so much about myself. I’m realizing I’m a lot stronger than I have given myself credit for. But my strength is God-given. And I know that because there have many multiple times throughout this ordeal that I just wanted to give up and quit. But something in me would not let myself stay down for too long. Something in me always looks to find the bright side of everything I encounter. And that can only be explained as- Jesus. Even when I feel faithless, He continues to bless me. And EVERY bad thing that has happened to me thus far in my life, something good has come out of it. Whether that was a person I met or a lesson that I learned, God has used it to bless me! So I HAVE to believe that He will use this. I mean, He spared me, so that must mean I’m here for some reason, right?

By Khaliah, Apr 8 2014 02:10AM

3/28/14


There are still days I wake up and can’t believe what happened to me actually happened. Sometimes I wonder if this is all just a nightmare that I am eventually going to wake up from. While I was sedated, I had very vivid dreams that I still think actually happened, so maybe this is just a dream…


But everyday, I realize that its not a dream. And every day I look at my face in the mirror and I start to remember different things that happened. I’m not sure if it was the medication I was on in the hospital or just the ordeal itself, but it wasn’t until recently that I started to recall everything that happened. This is what I remember...


I remember waking up at about 3 am on the morning of the 18th of January and something just didn’t feel right.. A couple days before that, I went to the ER and was diagnosed with the flu. I’d never had the flu before so I wasn’t sure what to expect. All I know is that I felt horrible. I had a fever, was extremely exhausted, and I started getting blisters in my mouth. My temperature was up to 104 at one point so I thought the blisters in my mouth were from having a high fever. But when I got up to go to the bathroom around 3 am, I noticed that it felt weird to walk. I got up almost every hour to go to the bathroom and each time I went, it was more difficult to walk. By 6 am, I was crawling to the bathroom. When I flipped on the lights, I was horrified by what I saw. I was covered in a rash and had huge blisters on my feet, hands, inside my ears and on my eyelids. I crawled back into bed, still thinking this was all flu related. But then I started thinking about everything I had heard about the flu and quickly realized this was more than just the flu.


I called my friend Kathryn to take me to the hospital. She got to my house a few minutes later and I had to crawl out of my house, down the stairs and into her truck (which she had to pull into my grass). She suggested calling an ambulance, but being my mother’s child, I refused to pay for an ambulance ride! Luckily the hospital is less than 2 miles from my house, so we got there quickly. The next thing I remember is trying to being wheeled into the isolation room in the ER and the doctors asking me what felt like the same twenty million questions and crying because I was in so much pain. They told me they needed a urine sample but I refused to give them one because it hurt so bad to urinate.


Everything gets kinda fuzzy after that. I remember them telling me they couldn’t treat me and that they were going to send me to Macon and I’m thinking this is a hospital, what do you mean you can’t treat me!? But what I didn’t understand was how serious this condition is. Then I remember calling for Kathryn, who was gloved and masked up because she is a paranoid hypochondriac and thought she was going to catch whatever I had! The next thing I remember is riding in the ambulance to Macon and being wheeled into the ER there. I remember my nurse asking me if I was comfortable and giving me pain medicine. Then I remember a doctor coming in and telling me that I had Steven Johnsons Syndrome. Had no idea what that meant at the time. Then I remember one of my nurses, Christy and I taking a picture together and talking to her about taking pictures (always recruiting new clients! HAHA) and then…the next thing I know, I was waking up 5 weeks later.


That’s pretty much what I remember!


By Khaliah, Apr 5 2014 02:46AM

Thanks to the Lord, Khaliah Shaw is healing much faster than expected and will be released from the hospital tomorrow! Initially, they said "maybe Friday," but then she called me this morning and said it would be Wednesday. She is SO ready to get out of here and I'm glad too. I know Grady Hospital WAY more than I ever wanted to! I will have to add another job to my resume; Nurse Mom! I'll have to do her dressing changes (she only has a few areas, but nothing major) LOL, that's ok though, everything will be fine. She still has to build her strength and her skin still has to heal all the way, but I know she will be just fine! Thanks again for everyone's support, cards, contributions, prayers, etc. I SO appreciate everyone.


I said I would update until she went home, so this may be the last update. I'm sure in no time she will be back on FB and can give her own updates. This has been a LONG 7 weeks and there were times when I didn't know how I was going to press on. But God!


While we still don't know the purpose of all of this, I believe it all happened for a reason. I know He wouldn't take Khaliah or I though this for nothing. I still hope that everyone who sees this post will research Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis and learn more about it. If this can happen to Khaliah, it can happen to anyone! Know about the medications you are taking and the possible risks associated.


I haven't quite decided yet, but Khaliah would like for me to tell her story. Maybe a movie, maybe a play, maybe a book...who knows, it may be all three. But if I had not lived this myself, I wouldn't have believed it! So you will be seeing and hearing more about this! #teamkhaliah #mybutterfly #readytofly #goinghome #butGod #Heisahealer

By Khaliah, Apr 5 2014 02:44AM

Miss Khaliah Shaw got up and went for a ride around the hospital today. She's now hanging out at the nurses station. Glad she got out of her room! We even went outside. She was so glad to get some fresh air... until a homeless man approached us. She was ready to go back inside! LOL, she's still a mess. Still doing well. They are talking about letting her go home this week. Still no seizures. I'm sure before long, she'll be back on FB! God is so good! #teamkhaliah #mybutterfly #Hedidit

By Khaliah, Apr 5 2014 02:43AM


Khaliah Shaw is still doing well. She's still trying to take all of this in, which is difficult for her. I think this would be a very difficult situation for anyone to be in. There are no real changes. She's continuing to heal, getting stronger and moving one step closer to going home. I can't say thank you enough to God for bringing her through this. This could have turned out so different. I just pray that He brings her comfort and helps ease her mind about all of this.


We still need contributions to The Khaliah Shaw Fund! If you'd like to help, the information is attached. #teamkhaliah #mybutterfly #thekhaliahshawfund

By Khaliah, Apr 5 2014 02:41AM

Khaliah Shaw was moved from ICU to Step Down today and within a week or 2 should be going home. Thank God! She was a little frustrated today with a few things, but overall still doing well.


At first they were saying she might have to go to an inpatient rehab after she was discharged from the hospital, but after seeing how well she's doing with her PT, they said she'll go home. We can have PT come to the house and work with her there.


She's resting now after a long day. I think I'll try to get a nap too! #teamkhaliah #mybutterfly

By Khaliah, Apr 5 2014 02:40AM

Another great day for Khaliah Shaw! She walked around the whole unit, dancing all the way of course. She's doing very well with her PT and no seizures! She sat at the edge of the bed and had lunch, stood up by herself to hug one of the nurses, and is able to move herself around in her bed. This may not sound like a lot, but last week, she wasn't able to do all of this as well as she can now. She still gets tired easily, but she's building up her strength. Each and every day, she's looking better and better!


Many of her friends and mine have offered to come sit with her to give me a break. That would be great! As much as I hate leaving her, I know I need to get some sleep if I don't do anything else!


If you want to come sit with her for awhile, just inbox, text or call me and let me know when and I'll add it to the calendar.


Also, for visitors, it's probably best if only 1 at a time visit. I've noticed that she is extremely tired when there's more than that, especially if they stay for a long time. She fights going to sleep until she just can't take it any more, then she's very tired. It may also take awhile for her to get all of her energy back.


Thanks to the man upstairs, she's continues to be on the road to recovery. I just thank God EVERYDAY because this could have turned out so much different. The two young men in the rooms on either side of her are very, very ill and fighting for their lives. I feel so bad for them and their families. While Khaliah is making huge strides and getting better, they are praying that their sons make it through the night. While I want to celebrate, it's hard seeing them so worried and sad. But I understand. I know what it's like.


Time for Scandal.....my butterfly is sleeping. She'll be mad she missed it! #teamkhaliah #mybutterfly #gettingbetterdaily #itsallbecauseofHim

By Khaliah, Apr 5 2014 02:39AM

Khaliah Shaw is doing great! Each day, I see the physical changes and she's getting better and better. She was able to sit up in the chair and feed herself today. PT had her get up and walk down the hall a few times. Of course, she was dancing! For the most part, she's in good spirits. She does have her moments though. No seizures since Monday, thank God!


I'm SO tired, so I'm not going to write a lot tonight. I hadn't had time to write anything for the last day or so because Princess K has me up running! I'm working during the day, then I come and spend time with her until she goes to sleep at night. At first, I had to help her eat, help her get comfortable, get the nurse, go get her popsicles, etc.., but now, she's beginning be able to do some things for herself. Of course, the nurses do a lot of that too, but they can't be with her 24/7. I think I'll hire her a personal assistant to do all the things she needs! LOL, I'm kidding, but it is work trying to keep her happy!


I hope to have her website up soon. I really haven't had time to work on that either.


She's had a few of her friends stop by. Of course, she really enjoys that. She still gets tired easily, so I have to make sure she doesn't overdo it.


But I'm happy to say that she's good. I see her improving every day. The only reason she's still in ICU is because of the seizures. Once they get that under control, she can be moved to Step Down.


Hopefully, the trach will be out by next week. Then it will be her getting stronger and her skin continuing to heal. Her eyes and vision is improving every day.


Ok, I'm exhausted. Will try to update again tomorrow. If not, just know that everything is fine. #teamkhaliah #mybutterfly #Godisgood

By Khaliah, Apr 5 2014 02:38AM

This update will be short because I'm about to head home to get some rest. Today was a pretty good day for Khaliah Shaw. She did have one seizure, but luckily it was while the Neurologist was with her. They still think it's related to coming off the meds and didn't think it was epileptic, but will do some further assessment and tests. The only thing keeping her from moving to Step Down is the seizures. She is back on a full diet and doesn't seem to be having any trouble with her food. We even celebrated Valentine's Day and she had a few pieces of chocolate.


She was in great spirits, being the Princess K that we all know and love. She's resting now, so I'm going to try and get some sleep myself. Still praying for these seizure to stop completely and that this is not something she's going to have to deal with going forward. It's just a trip what these medications do to us. I know they help us too, but man. They can surely cause a LOT of problems! #teamkhaliah #mybutterfly #Godisable #Godblessmybutterfly

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