As I write this, Sophie is peacefully sleeping during her 6th night in the hospital. Last Tuesday, she stayed home from school (it would have been her second week) because of a fever. On Wednesday afternoon, we went to the PCH UrgentCare, and she was diagnosed with a urinary tract infection (UTI). On Thursday, I took her to the ER at the request of her doctor to get some labs done. She had had a fever on and off for several days and I noticed a change in the color of her stool (a sign her liver is not draining properly). Turns out she had a urinary tract infection (UTI) and ascending cholangitis (infection of the bile ducts coming out of the liver).
The first night in the hospital was really hard for several reasons. She couldn't eat or drink until the doctors figured out the course of tests and treatment (she did get IV fluids), which, of course, takes forever. This pretty much meant that I couldn't eat or drink until she was admitted as that would have made Sophie want food or drink even more. Add to that the emotion of thinking that your daughter is going to need a liver transplant. Doctors did tell me that she had elevated bilirubin levels, which was a key marker for her biliary atresia she had when she was born. To recap, the Kasai Procedure as done is completely successful about third of the time, works for a while a third of the time, and fails a third of the time. In the last two instances, the treatment is a liver transplant. My thought on Thursday night was the elevated levels meant that she was no longer in that first group, and might soon be facing another major surgery.
Luckily I was distracted by trying to keep Sophie happy. I can't fully blame the doctors, but no one gave me a really good explanation of what the issue was until we saw her regular GI, Dr. Ursea (she's awesome!), the next morning. I thought things were worse than they really were. I didn't realize that the drainage issues could be temporary. It turns out she just needed some IV antibiotics. By Friday, she was acting normally.
The first rule of being in the hospital is to never expect to go home when they say you might go home (especially the first date they give you), which we learned when Keith was in the hospital last year for his rhabo. They said they wanted to keep her on the antibiotics for 5 days, at which point she would probably go home. Luckily I knew this rule already, so I wasn't heart broken when they said the bacteria that was in her urine was resistant to the antibiotic they had been given her (even though clinically she was doing much better) and that she would need to stay longer to get a new antibiotic. (Zosyn was the original medicine given; she's getting Meropenem now, and will go home with Bactrim, for all you doctors/nurses playing at home.)
The second rule of being in the hospital is that all other rules pretty much go out the window. I don't feel guilty about how much TV we watch, or for having a dessert with almost every meal. Now that Sophie is feeling better and is off the IV fluids, life at the hospital isn't all bad. We're only confined to the room for an hour twice a day for her antibiotics and for sleep. Someone else cleans and does the cooking. It's something like 110F outside, but inside we're wearing pants and socks. We've finally gotten into video conferencing with the new Google Hangouts (we never did get into Skype), and do a few calls a day that way. We're actually getting a decent amount of sleep, and thanks to Grandma/Nana/Daddy, I've been able to get away and get some exercise, and keep up on my work. Sophie likes the attention from all the doctors and nurses, and loves going for walks in the hallways, saying "Hhhiiii!!" to just about everyone who walks by (I joke that she thinks she's the official greeter of the hospital). We're at Phoenix Children's Hospital, a really awesome hospital. There is a playroom on our floor with lots of stuff for Sophie to do (and a really awesome playroom downstairs for the older kids), and tons of volunteers who do everything from give you books and coffee to bring therapy dogs to your room. They even have a library (open to the public, fyi) about children's health issues. And cool decor.
The hardest part of being in the hospital is not being able to spend more time with Owen. I have spent some time with him, but every time he's come here for dinner (not your idyllic family dinner), he cries "Mommy!!" as he leaves. I know he's fine by the time he gets out to the car, but it really tugs at my heart strings.
The good news is that we are likely to all be home for dinner tomorrow night (Wednesday). Tomorrow we get the final results of Sophie's latest urine culture, and if it's negative for bacteria, we can go home. I'm looking forward to it, but don't worry, I haven't forgotten Rule # 1.
P.S. I realize I'm really behind on pictures/blog entries. Stay tuned.
