I might as well start at the most important happenings and catch up after that. I brought Elise home from a super fun pirate party last Saturday and noticed she had two little bumps on her tummy. I was furious thinking that I had let her get bitten by a mosquito or something. Surely I don't need bug spray in March, right?
In a matter of an hour there were about fifteen bites. I ran over to show Meme (we were in Harrison) and she thought it looked like the hives. I sent a picture to Ross (he was on call in Springfield) and he thought the same thing. We gave her some Benadryl and the spots only worsened. I texted a picture to our doctor and he thought it looked like the hives also. For some reason I wasn't convinced, but I am spastic and that's that. I barely slept a wink all night looking at her spots and checking her breathing. When she woke up the next morning she looked HORRIBLE.
Dad and I took her to the ER in Harrison where they said it was an allergic reaction to something and we gave her more Benadryl. The doctor said it could be the amoxicillin she was on for her ear infection and to cease giving the meds. She was on dose twelve AND she had taken the medicine before for the full ten days, so I never even thought of that possibility. As the day wore on, she got worse. I couldn't fathom this because of all the Benadryl she had in her system. Ross drove down and she had continued to get a more intense rash. Her hands and feet turned blue and we raced back to the ER. They gave us a dose of steroids. No improvement. I was completely freaking out at this point and it spread to her face, which was awful. We drove her to Springfield the next morning to see our doctor.
He felt it was erythema multiforme, which is a skin reaction related to a drug reaction or infection. I broke down in his office and cried and cried. She looked continually worse and had begun scratching her skin furiously. I felt so sad and helpless for her and could not believe nothing was making her better. Dr. Hahn prayed with us and was very comforting, but we left his office and I was still so sad.
By that afternoon around four her hands and feet were turning blue again and her temperament had taken a sudden turn. She was cranky and uncomfortable and pale as a ghost. I took her to the hospital to show Ross and we landed BACK in the ER. Third ER visit within 24 hours. I just wanted to scream, "SOMETHING IS WRONG WITH MY BABY. DO NOT GIVE ME MORE BENADRYL AND SEND ME ON MY WAY." The ER doctor admitted her to the pediatric floor. She had every test under the sun run. Tons of blood drawn, an iv, a strep swab, you name it, we had it. I was so thankful they were taking me seriously and looking at all possible causes.
Mom and Dad had Amelia and I wanted them to say with her and keep her calm. When she saw Elise's skin on Sunday she was visibly shaken and very upset, so I knew she needed to know as little as possible. G and Pa came up to be with us late that evening when we were admitted and I was so glad to see them. Barbara and Darrell are both very calm and that rubbed off on me the teensiest bit. Elise was uncomfortable the entire night and was up scratching and crying. Barbara walked the halls with me all night and kept helping me entertain Elise. Pa was Elise's person of choice to sit with. He kept telling all the nurses to leave Elise alone when they came in to do vitals and she thought that was funny.
Finally they decided to switch her to a different medicine to try and get her some relief. It started to work and allowed her to take some naps!! I asked the doctor what the worse case scenario was and he admitted that it could turn into Stevens Johnson syndrome. The skin could scab and the wounds could open and her entire body would look as if it had been burnt. She would have to go to the burn unit and so on and so forth. I asked Ross if someone had ever died of this and he said, "Well..yes..but she's not going to." It sounds silly but I went into anti Stevens Johnson mode. I decided I could be strong for Elise through the rash and the pain and the blood draws and whatever else as long as there was not one single scab starting to form. I stayed up all night looking at her skin with a flashlight and prayed that she would not scab. And, although she was showing no improvement, she was not getting worse. That was a big praise!! Jessalyn came to visit and she also brought diapers, fruit loops, a new outfit and other goodies. She made several visits when Ross had to return to work and I was so thankful. Jen and Tom came too, providing some big smiles for Elise and they brought her a sweet little elephant and mommy Starbucks. My best friends came up to see me and brought Dr. Pepper and hugs. I was so thankful for all of these things and felt an overwhelming sense of blessing during this time.
Balloons and animals from Kaci, Kim, Shelb, and Lene were a huge hit with Elise and distracted her for a long time. Then more balloons came from Gammy and Gampy and she was excited all over again. My friend from high school sent a yummy fruit bouquet. Thanks Liz and family !!
Her legs suddenly started swelling the third day we were there and were almost three times their normal size. It was scary and a new thing to add to our worries. We managed to get her to elevate her legs for an hour and that helped drastically. She also randomly developed a fever that everyone was a little worried about (I was more than a little worried). We weren't sure why there was a late onset of the fever and we just wanted it to go away. It made her so uncomfortable and her already hot rash was now feverish and burning up. Here are the poor little legs.
The rash then started to change from big bullseyes to lacy lines all over. We hoped that meant it was clearing out. Her back was the first part of her to have clear skin. This was such a huge blessing to see that beautiful milky, white baby skin.
Since she was looking better, Mom and Dad brought Amelia up to eat supper with us. She knew she couldn't see Elise, but was very happy to see her Mommy and Daddy. I started bawling. It was so eye-opening to think of parents whose children have chronic illnesses or have to stay in hospitals for long periods. They are in pain for their sick/hurting child and desperately missing their other children as well. All I could feel was overwhelming joy. We went to Steak N Shake and then bought Elise a treat in the giftshop. I was so glad Mom and Dad brought her up for a quick visit to renew my wavering strength. My Mom and Dad were so awesome through this and I never for a second had to worry about Amelia. She was having the Spring Break of her life, haha.
A dermatologist came to see us since the rash wasn't really improving and he prescribed us some steroid cream and it honestly made such a difference. The rash started really clearing up after that and we got to go home the next day!! Emily came up while I was packing our stuff and she held Elise for me. Elise has loved Emily from day one and loves her even more now since Emily brought bubbles and activity books and markers and crayons and books. She was such a great friend during our hospital stay. Oh, and she kept me stocked with Sonic Vanilla Dr. Peppers. The sole reason I was able to stay up for three days.
I was so elated when we got released. The fever was gone, rash was fading, leg swelling gone. She was almost completely back to normal. It was so awesome and I couldn't help but be heartbroken for those with longer stays. This was so scary, and I was so thankful for an outcome that can be controlled. No more penicillin!! As soon as we got home Elise started screaming, "SWING." And swing we did :)
*The strange thing about this experience and I guess, about human nature in general is that I already had forgotten how bad she looked. We are home and her skin is fine and she is acting like a wild woman and I feel like I all too quickly have forgotten how scared I was and how strong I was trying to be. I have to close my eyes to remember that empty aching in my gut and that cautious optimism as the rash started clearing. I am so thankful to the ultimate Healer and for the community of believers that rallied around us and prayed for our sweet girl. To God be the glory!
This picture cracks me up. Amelia is dressed for Crazy Sock Day at school (very hyped up) and Elise is still in her jammies and a noodle necklace, and has been playing with a stuffed Christmas tree (at the end of March). Typical.
We sure have missed having millions of Pop Ice! Just stocked up on a box of 100. Should last us a few weeks.
