Each week that passes my daughter is gaining more and more weight and we celebrate each pound! She is still eating double portions and they are very slowly tapering her down off of steroids over a series of several weeks. School has started and we are thankful our high school here is sending her work. She has 2 hours per day in her schedule to work on school. She feels behind but is making progress. Most days she sounds great over the phone, but there are those low phone calls where I remind her I love her and that she will come home when the time is right. She is making great strides in therapy and I’m so proud as I know that’s so difficult for a kid her age to do. Staring your pain and abuse in the face is absolutely terrifying but necessary for healing.
My daughter has now gained over 20 pounds and looks soooo good! We picked her up on Friday and brought her home. She did great over the weekend and we feel like a family again. She really loved going to church and seeing all the people she missed as many of them were faithful in writing her cards and notes of encouragement.
However, when I picked her up I noticed a red spot on her eye. I also noticed she had put eyeliner on the interior part of her eyelid and I assumed she has irritated her eye because of this. We chatted about where the healthiest place to use eyeliner is and that she shouldn’t be hurting her body by doing that. She also showed me what she called, “spider bites” on her legs. I told her spiders usually only bite once or twice, not several times. Maybe they’re mosquito bites that are causing a reaction to her? No idea. The hospital instructed us to administer hemorrhoid cream to help with the itching and we set out on our long trip home.
Monday morning I met with the high school on transitioning her back into her classes and making a few modifications for her like allowing her to use the restroom as she needs because of her chronic condition. She set out to her classes. That afternoon a nurse called me saying they need proof my daughter doesn’t have pink eye. So that evening I took her to Urgent Care after work where we discovered she had a fever of 102!! We had no idea! She was complaining that she was cold, but she does that on a normal day and it had been quite chilly outside. I also showed the doctor her legs and said we thought those were bites of some kind. After taking blood work and a urine sample he returned to show me a rare condition on his phone: Erythema Nodosum. I had never heard of this but it’s a response from a weakened immune system. Poor kid! Everyone is calling this a “textbook pic” of what that should look like. Everywhere we have been since the medical staff asks permission for other staff to see her legs because it’s so rare. We’ve been glad to help be a part of the education process for medical staff. They put her on an oral liquid steroid again, antibiotics and an eye drop for the redness in her eye.
My daughter went to school the next day and at suppertime she couldn’t even hold her head up to eat supper with us! Monday we arranged for her to attend school ½ day. I picked her up at 11:45am and we had lunch together and soon afterwards she crashed on the couch so hard she didn’t even hear me leave.
She lasted through that first week ok and then diarrhea started on Friday. She didn’t tell me about it until Sunday. We have been told that we need to seek out help if this happens. When she continued to have diarrhea I called the specialist’s office to report the diarrhea and ask for a sooner appointment. There’s nothing available. 2 more times I called that week expressing she has SEVERE UC and that I’m told to contact her doctor immediately! The receptionist I was talking to consulted with a nurse who said we have to wait until the 14th. I knew that was way too long to wait.
By Thursday night I was getting so worried at seeing her energy level decline, the color in her skin changing I couldn’t relax enough to sleep. I tossed and turned and prayed to God for help! It feels like I’m watching my daughter die right in front of me and I can’t even get her an appointment! I got out of bed to cry and express my frustration and in the middle of crying I called Baptist Hospital in Winston to ask for an ER nurse. I told her what’s happening and my frustration that I cannot get my daughter in to be seen. She recommended I bring her in to the ER.
Because she has been so tired I let her rest through the night, so I went back to bed and slept until morning. So now I’m sitting in a pediatric hospital with my daughter once again… ER doctor didn’t want to do anything without consulting the GI department. This took a good while. I think we were in the ER about 10 hours total before they moved us into a room on the pediatric unit where I can have a place to rest too. Thankfully I slept pretty well last night. I was able to shower this morning and wait until we could talk to the GI doctor who was consulted by phone while we were in the ER.
This is Journal 4 of a six part series.
Jeni Martin Johnson 
Leave a Reply