We started out with a recheck appointment with the eye doctor to see if the inflammation in Sophie’s right eye had finally resolved. We were dealt what I can only describe as a gut punch. One of those doctor appointments that leaves you swirling and almost out of breath. After 2 weeks off of the steroid eye drops, we were told that she had an adhesion (a synechia) in her eye from the inflammation. A synechia is an eye condition where the iris adheres to either the cornea (i.e. anterior synechia) or lens (i.e. posterior synechia). In Sophie’s case hers was an anterior synechia. Synechiae may lead to certain types of glaucoma. Anterior synechia causes closed angle glaucoma, which means that the iris closes the drainage way of aqueous humour which in turn raises the intraocular pressure. So, in simplicity, my 4-year-old is at risk of glaucoma from the inflammation and adhesion in her eye. In an effort to “break the adhesion” loose we were given eye drops to keep her eye dilated and a new steroid eye drop with a recheck scheduled for 2 weeks.
That appointment was on a Wednesday. The following Sunday, Sophie woke up at 4 am with a fever that was over 103 degrees. She has never spiked a fever this high this unexpectedly. This mama was scared. My first phone call was to my best friend who is a nurse (and who can keep me thinking rationally), then to my folks to let them know we were heading to the ER at Blank, then to Sophie’s dad. I dosed her with Tylenol and took her temperature before we left, 103.7 degrees.
At the ER, they checked her over, gave her toys to play with, took a lot of blood and swabs… and said they didn’t see anything so suspected she was fighting a virus. After about 4 hours, they sent us home to keep an eye on the fever and continue the cycle of Tylenol going. At 2 pm, her fever maintained just above 102 with Tylenol and she was very tired all day. In the middle of the night when it was time for her 1 am dose, her fever was down to 100 and I thought we were finally breaking it.
Then again at 4 am she woke up with another fever over 103 (and an hour left till her next Tylenol dose). I was again on the phone with trying to decide the next course of action. I decided to give her a dose of Tylenol 30 minutes early and see if it responded then head into the ER if it didn’t. However, when I went to give her the Tylenol, I discovered she was covered in a rash all over her trunk, arms and legs. ER trip number 2 was not waiting.
Thankfully she was seen by the same doctor as the morning before and it was discovered that she had a raging strep infection. After morning #2 in the ER we were sent home with antibiotics and to follow up with her primary care physician. If the fever didn’t respond or she got worse we were to go back to the ER. Thankfully, her fever started responding fairly quickly and I was able to keep it under 102.
That night we were snuggled in bed, Sophie was comfortably asleep and I was almost there when the ER called and told me they needed her to come in right away due to bacteria growing in her blood culture from the first visit. So, now I had to wake up a sick, tired, sleeping little girl, put the magic cream (Lidocaine) on her for the blood draw and drag her back to the ER in the middle of the night. Thankfully, since her fever was responding to the antibiotic and she was acting more normally, they let us take her home to continue the rest and meds while we waited for the results of the second blood culture.
So, that is 3 ER trips in under 48 hours. We were exhausted. I was scared by how sick she had gotten so quickly. On Wednesday, I got the call from the ER that her second draw was not growing the Staph bacteria that her first one had and they would continue to watch it for a total of 7 days giving me daily updates. While talking to the ER doctor, I was given her official diagnosis from the ER trips… she had Strep and Scarlet Fever (caused by the extreme Strep infection and is ultimately what caused the high fever and rash) and that both were responding to the antiobiotics. At her follow up appointment her primary care physician indicated she was pretty sure Sophie was also dealing with Mono on top of all of it because of her fatigue. The daily updates about her blood culture remained clear, which was a major relief.
That week was the longest scariest week, constantly watching her fever to ensure it didn’t spike again. It was scary knowing how close she had been to being admitted. It was terrifying having to watch and know that if the fever spiked again before she was done with the antibiotic we would be facing the admission we had so far avoided. It was scary realizing that her arthritis meds were a contributing factor in how sick she got and how fast because her immune system was so suppressed. It was sad and fearful knowing that we had to hold giving her the immune suppressing meds until she was past the infection and that by holding those meds (in addition to her being so sick) was going to inevitably cause her joints to flair and pain to increase.
But here is what I know from my experiences that week, my daughter was once again amazing. She took it in stride with a cheery attitude and made new friends with her nurses and doctors in the ER. She had amazing nurses who made her comfortable and happy. She snuggled A LOT. She showed amazing strength. God watched over her and protected her. God was all around us in the loving support of my “people” who checked in on both of us multiple times every day. We felt God’s presence when we needed the peace and comfort from our fear and exhaustion. We saw God’s healing power as she quickly improved. Yes, she was down for a week and is still dealing with the fatigue and pain from her joint flair, but she honestly recovered so much more quickly that I was expecting. For that I am thankful to God for His healing touch.
We had the 2 week follow up on her eye, the adhesion has improved but is not completely resolved. We are finishing up the second week of a stronger dilation drop and steroid and are hopeful that at her follow up this week her eye is completely cleared up from the adhesion and inflammation.
We go to Iowa City to see her Rheumatologist the week after next and are preparing for another medication change if her eye hasn’t cleared up. We are preparing for her to under go general anesthesia the same week in order for her GI doctor go scope her and try to determine the cause of her GI troubles. They will be checking and testing her for Inflammatory Bowel Disease, Crohn’s Disease, and Celiac Disease.
We are praying for all good news in the next two weeks. They say that April showers bring May flowers. We are hopeful that the storm and showers we experienced in April, produce the good news and blessings of May flowers!