Sunday night, Maria was acting like something was bothering her. She kept flailing around and didn’t sleep all night. We didn’t really think much of it at the time, but that was probably the start of whatever is going on right now.
Monday she had her barium swallow. She ate fine that day, but it was very hard to get her to drink. We tried milk and different juices and she’d drink a few swallows then very pointedly push the bottle away. All day she drank about 12 oz. This also made the barium test a little tricky, but Cathy was able to get her to drink enough that they could get results. We also noticed she was hot but never got around to taking her temperature. Maria is frequently hot and sweaty and we’ve just gotten used to it.
Tuesday things got worse. Cathy called about 5 pm to say Maria had drunk about 2 oz all day and was throwing up everything she ate. She hadn’t passed the barium (barium makes white poop and it’s obvious when it’s gone through) which was a bit of a concern. She was also running a fever of about 101. Cathy decided to call the nurse hot line. The nurse pretty much went, “OH MY GOD!!! Get to the ER right this second!!!” She was concerned about dehydration, but also about the barium sitting in her system.
So they headed down to children’s hospital. Chest x-rays and urinalysis were fine, but her blood work showed an infection. A shunt series and CT scan showed the shunt is working fine but they decided to keep her overnight for observation. They are giving her IV fluids and the on-call neurosurgeon is going to talk to Maria’s NS this morning. I imagine they’ll send her home later today but you never know. I’ll post more when we know more.
UPDATE 11:30 am: Not much more to report. The on-call pediatrician noticed her pupils were like pinpoints, but her pupils always do funny things because of her optic nerve problems. She continues to sleep and sleep, and not eat or drink much. Manolis thinks they are going to keep her in the hospital, but I’m fairly certain they will release her today. The neursurgeon hasn’t been by yet, which is the visit we are really interested in.
UPDATE 12:30 pm: That pediatrician continues to be concerned, and personally I think is overreacting which is common with pediatricians around Maria. Maria’s heart rate has been low and her blood pressure is up a hair. She continues to sleep but woke long enough to take 6 oz of milk (the most she’s had in almost two days). The pediatrician is talking about putting her in ICU so they can monitor her more closely. He is thinking there is increased intercranial pressure, though since the neurosurgeon doesn’t think so then I doubt it. Maria’s own neurosurgeon hasn’t made an appearance yet.
UPDATE 1:00 pm: Maria’s neurosurgeon came by and he is also very concerned. Unlike the on-call NS, he thinks that her ventricles might be enlarged. However they are comparing a CT scan to an MRI which makes it hard to tell. He ordered another MRI and is probably going to put her in ICU. Based on the results of that, they might tap the shunt which, I believe, checks the pressure directly as well as allowing them to examine her cerebrospinal fluid. Yuck. I guess the little munchkin won’t be home today after all.
UPDATE 4:30 pm: Maria is in the PICU now. Her MRI was apparently fine (that message is from the neurosurgeon to the nurse to Manolis to Cathy to me so the specifics are a little sketchy). She’s still sleeping all the time, though they can rouse her. They told Cathy not to give her anything eat or drink just in case something comes up that makes them decide to do surgery. As far as I know, they aren’t giving her any drugs except Tylenol. Her heart rate continues to fluctuate down to the 55-60 range and they are puzzled by that – I think that was a big part of why they decided to move her to PICU and monitor her more closely.
UPDATE 6:00 pm: Cathy talked to the neurosurgeon. He said Maria’s ventricles are larger than they were earlier this year, but about the same size as they were a year ago. Many of Maria’s symptoms, like the fever, are NOT symptomatic of shunt failure. He’s adopting a wait-and-see attitude. He’s not going to tap her shunt because he doesn’t think he’d get enough fluid for it to matter. He has reserved an OR for tomorrow just in case but doesn’t think he will need it. Maria is apparently awake and smiling now so maybe she’s starting to feel better.