In the hospital

 Mira's been taking a mini-"vacation" at Gillette for the past few days. She, as usual, presents all sort of odd symptoms, and it's anyone's guess where they're coming from. This whole deal started with about two months of oddness, including emesis (the nice medical word for vomiting) three to five times a week, and severe difficulty urinating (to the point where she'd hold it for 8+ hours, and wasn't able to go unless Matt used a pressure technique that her PT taught us), and episodes where her heart rate would vacillate between the 70s and then pop up to the 140s, often connecting with needing to pee, but not being able to. We've made a successful change to her diet to help in her bowel movements (sorry for all of the joyous topics, but that's life with Mira!) and it's been a wonderful thing to see her progress in that, but these other issues are still there.

A week and a half ago, the urologist at Gillette inserted a Foley catheter, with the intention of seeing if she's just having trouble draining her bladder, and if doing so with the catheter would eliminate some of her distress. He talked at that point about a potential surgery that would bring her bladder up to her abdominal wall, and make a hole so she can bypass the whole urinary tract and just drain continuously into her diaper. If we had good results with the catheter, she may be a good candidate for the surgery. He does surgery once a month, and she could have it done as soon as the first week of February.

By Friday last week, however, her urine output was low, which shouldn't be the case for someone on a fixed diet - what goes in must come out! - unless there's a problem. So Matt and Justine (her nurse) brought her down for one of their same-day clinic appointments, and when he heard which doctor was on call, Matt told me, half joking, that she was probably going to end up admitted to the hospital. 

Sure enough, last Friday she was admitted for a 24-hour observation, which has been extended day by day as they chase different things. First of all, she has a UTI (urinary tract infection), but it's new. But it's also drug resistant, so she's got to be on IV meds to treat it properly. They also ran a bunch of labs, and found many levels (liver, gall bladder, salts, white blood cell, red blood cell) that are just a bit off one way or the other. Nothing conclusive so far.

However, they decided that the above-mentioned surgery was a good idea for Mira, even if it doesn't answer all of the questions that we have about her right now, so she's going in tomorrow morning to have that done. It should be a very simple procedure. Yes, it's surgery, but she's always done surprisingly well at handling anesthesia, so it's not a very concerning thing to have her going in for surgery, particularly because it's a really straightforward procedure with very good prospects for her. The biggest down side of the surgery is that you have to always wear a diaper. Not really an issue for Mira!

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Today was the day that Reuben had his annual neurology followup in person with his neurologist. He and Mira, again, were scheduled to go in on the same day. Last year at this appointment is when Matt and Mira went home from the appointment, and Reuben and I went in patient for his g-tube insertion. This year, just Reuben and I went because Mira's already inpatient. Maybe one of these years we can get them both in and both home. :P Reuben's not doing great, but he's so much better than he was a year ago at this time.