Unfortunately, I had to take Avery to the ER on Wednesday night. She had been extremely irritable and crying for a few hours, which is very out of character for her. I paged a pediatrician and explained she was crying (with no fever, cold, or obvious sign of sickness). Unable to figure out what was wrong with her, the pediatrician told me to go to Rady Children's Hospital ER.
Once there, we were seen immediately as she was considered the most emergent. After getting vitals (all normal), we went into the main ER room where they attempted for 1 hour to draw blood, gather urine and insert an IV. They had an extremely difficult time due to her little veins to get the needles in. She screamed the entire time. Also, they tried to get a catheter in to gather urine. Unfortunately, we learned that she had a Fused Labia. Because of this they were unable to get urine. They eventually got blood, but were unable to insert the IV.
Due to her history of SVT in-utereo, they decided to hook her up to a heart monitor. Then they took another rectal temp and discovered she was running a low-grade fever.
After 1 1/2 hours, we finally had a doctor come see us. As she started talking, Avery started smiling and was very happy!!! What happened to my screaming child? After the doctor asked a bunch of questions, she determined Avery was fine and was about to give me the "babies cry sometimes" lecture, when just then, her heart when into SVT (high heart beat). Within seconds, the alarm went off, multiple doctors and nurses ran in, pulled the curtain and gave Avery their full attention. Someone came in within minutes to give her an EKG. The doctor looked at me and told me we were being admitted immediately.
They started her on a drug called Propranolol to help control her heart rate. Shortly within receiving the medicine her SVTs subsided. At 4 am, where were taken upstairs to a private room.
Avery and I were in the hospital for two more nights as they monitored her heart and made sure she was able to tolerate the medicine. She was going in and out of low-grade fevers, which they were unable to explain. On the last day they determined she was getting a little ear infection. They were also concerned about a UTI since girls with fused labias are prone to them. Numerous doctors and even a Urologist was paged to try and get a urine sample. None were successful.
They decide to give her Antibiotics through her IV to treat the ear infection and to potential treat a UTI, should she have one. They also ran a bunch of other tests on her. We are still waiting on numerous test results. After taking the IV off, we discovered her IV obstructed and the drugs went directly into her tissue and not her vein. Her hand was swollen huge!
Our Physical Therapist had mentioned to me at my last appointment that she suspected Avery had Scoliosis, so we asked the doctor to examine her back. Sure enough, Avery was also diagnosed with Scoliosis. We are waiting to discuss treatment options with our Pediatrician.
We were finally discharged on Friday at 8:30 pm with the prescription for Propranolol which has to be given every 6 hrs for 6-9 months. Which means we have to wake her up in the middle of the night to give it to her. After 6-9 months, they will see if the SVT is recurrent. 90% of the time it goes away. (Although, when she was born they said it was extremely rare for it to reoccur....and it did!) The doctors also sent us home with a cream prescription for the labia. Unfortunately, no pharmacy carries it or is able to make it. We are waiting on another prescription, or course of action.
We have a follow-up appointment with our Pediatrician on Monday & Avery will now have to start seeing a Cardiologist regularly. The doctors think she should still be able to be sedated for her MRI & surgery.
We are very saddened about Avery's SVT returning, but are optimistic it will be controlled and eventually go away. I want to urge parents again, that if you think something is wrong with your child (even excessive crying) to not ignore it and get your child checked out!