Before our Tuesday trip to the MGH Emergency Room, I was certainly concerned but I had never heard of anything like Stevens Johnson Syndrome and so I just assumed that whatever Christine was experiencing would clear up with time. It was encouraging that none of the doctors seemed overly concerned yet. However, the fact thing things got worse by the hour was nerve wracking. I spent 2 hours running errands to get her probiotics, yogurt, cold packs, and prescription medications when we thought it was thrush. I pulverized her dinner to make it easier to swallow, and I made her soup full of protein.
When she began throwing up and I watched her turning purple as she couldn't breathe, I was obviously petrified. The ambulance ride to the hospital was scary, because it was clear this had escalated to a very dangerous something. We told the story of her symptoms over and over again in the hospital, and I sat in a chair wide awake through the night while I watched her throwing up, scared, and in pain. After we entered the observation unit, I slept for 2 hours out of shear exhaustion, but woke up with my heart still stuck in my throat.
Throughout that day as I watched the rash progress, the sores in her mouth grow, her tongue swell, her eyes redden, and her pain increase I couldn't sit still and I couldn't eat. Everyone who called to ask if we knew anything yet I had to try my hardest not to cry hysterically into the phone. My parents were relying on me to keep her safe, not that I really needed the reminder with all the love I have for my sister. We had no idea what it was - we didn't know if it was a deadly virus or bacterial infection, we just knew that this was bad. My grandmother saved my sanity by coming to sit with me in Christine's hospital room - just having someone else there made a world of difference. After we received her diagnosis, I ran home to eat something and shower, and then headed back to the hospital to wait for my Mom and Tommy to arrive.
Having the diagnosis was a huge relief, but then a quick Google search of what SJS was brought back the panic. There were so many complications, and it seemed unknown how bad it could get. One thing was for sure, it was going to get worse. I asked every doctor and nurse who came in any question I could think of to try and better understand what was happening and what would happen, and what level of worry I should feel. Nothing helped, and I was in a constant state of panic over whether my sister was going to make it, and if she made it, what long term issues she was going to struggle with. Mom stayed with her that night.
The next morning I had to walk and feed our dogs before heading to the hospital, and I finally broke down. I cried for two hours in our apartment before I could regain enough composure to go to the hospital and not freak Christine out more than she was already. In that time I talked to both Tom and Kimmy on the phone as they had heard about what was going on, and I couldn't stop crying when they called. I was texting my best friends for support - just having a message to read and send was a life saving distraction.
Christine was moved to a private room on Thursday, and while the doctors seemed pleased with her progress, the consensus was the same - the worst was yet to come. Dad came to visit, and cried when he saw her. I know how impossible it is for my parents to watch her go through this and not be able to do anything to ease her pain. This was also the day that her O2 sats plummeted, which was seriously frightening experience - alarms sounding and doctors everywhere. We have been super impressed with her team of doctors and nurses, which has provided a sliver or reassurance.
The days continued from there, which just one thing after another sending another knife of fear and panic through my body. It seems that with SJS its uncertain what the extent of the progression will be, and this created some of the biggest fears. We just didn't know how far it was going to go or what complications might arise. I did my best to eat and sleep so that I didn't get sick and become unable to be at the hospital for support. My mom has been so strong through all of this, leaving the hospital for only very brief periods of time each day and staying with Christine through the night. She has had her moments though, and is constantly battling her own fear and emotional pain.
I barely need to comment on what Christine has been feeling. Every new development that she experiences brings on a wave of fear and anxiety. Her eye lashes falling off, her vision being blurry, the blisters forming and breaking, the inability to get herself to the bathroom, alarms sounding on her monitors, the people she loves most crying, the constant excruciating pain, the gum swelling, to name just a few. I am actually glad that she has been too out of it at times to remember it all, but she remembers the majority of it and is still experiencing it. I have been amazed with her emotional strength, and her spirit. Except for in times of the worst pain, she is as polite and warm as ever. She is full of determination, and is learning to celebrate the "small wins." This is obviously going to be a life changing experience for my sister.
All of these emotions are why it is so welcomed to have people checking in and thinking about us. I've been amazed with how many people have reached out and offered their support - especially given all of Boston's preoccupation with the marathon events. Thank you all so much. The fear and the pain that we are feeling for Christine (and that she is feeling) is still there, but with small signs of healing we are able to feel hopeful as well.
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