So Mila hasn't been herself since the first couple days home from the hospital. She was like a new baby for a few days but was sleeping terribly from night 2 and just fussy and upset a lot. It has been a LONG two weeks my friends. If you saw me you might run for your life....1. because I look awful and 2. because I'm an emotional basket case without sleep! Anyways, I took her to the doctor on Monday because she just didn't seem right but they didn't find anything. They decided to add another medication for reflux (she was already on one) since her reflux has been so terrible since surgery. Nobody could tell me why it has gotten so much worse since surgery, just that "it sometimes happens."
Yesterday she came down with a 101 fever and last night she cried the entire night....asleep or awake it didn't matter. I took her back to the doctor today and asked if they could do a UTI test (I had asked on Monday if it was a possibility but the PA said no because she had no fever...we had been medicating her with tylenol for her surgery pain so that was hiding the fever but it didn't occur to us...oh and I had also asked in the cardiac step down unit if there was a possibility of her having a UTI because her urine smelled so bad...but I was told it was from the antibiotics). So while waiting for the doctor I was changing Mila's diaper and she started arching her back and screaming like she's been doing a lot (we assumed acid reflux or gas all along) but at the time of this happening I happened to notice she was peeing since I was changing her diaper. I knew it was a UTI. Once the doctor came in she agreed with some of her symptoms that she should be tested and sure enough she has a rockin' UTI...a pretty nasty one :( She will need a kidney ultrasound to see if her kidneys are infected as well since it is so bad. She is on a pretty high dose of medication to try and get rid of this infection. The doctor said it's likely she has had it since leaving the hospital from the catheter (I guess she is assuming based on how bad of an infection it is and her bad reflux along with the fact that she's not been herself since then). The doctor said the worsening reflux is a symptom of a UTI. She said some kids vomit and some reflux really bad when they have a UTI...I never knew and never would have connected the two.
So if you could spare a prayer....Mila has been through so very much in the last couple of months and it's about time for her to catch a break and start lovin' life like she was meant to! We're pretty exhausted too and suffering from parent guilt from this going on so long and us not figuring it out until 2 weeks later :( Here's hoping that's why she's been sleeping so poorly and maybe in a few days we can sleep again!