We had a pretty busy day of appointments. Judith had her liver ultrasound, and also had her reculture/check up appointment with Dr. G. immediately after. We got some good news, a little bit of bad news, and some things that we need to work on. I apologize in advance because this post will probably be unusually long.
Of all days to have these appointments and to have to go into the hospital, it had to be one of the coldest days of the season and smack in the middle of one of the worst flu seasons in years! I swear we have some of the worst luck, and just once I would like a nice, decent day for an appointment: not on the hottest/coldest day of the year, no rain, no hurricane causing us to cancel, etc. Maybe one of these days we'll get lucky!
I was somewhat excited when I got the confirmation call for Judith's radiology appointment last week, and found out we would actually be in the new children's hospital instead of the main building. What we saw of the interior is really, really awesome! It was a little confusing finding our way around at first since I'm more accustomed to seeing lots of construction, but the staff was very helpful and we easily got to where we needed to be.
Judith had her liver ultrasound first. She was side-eyeing a lot of the staff, and as soon as I laid her down on the bed for the scan she started crying. I kept telling her that it wouldn't hurt, and they were going to take pictures of her belly (I even tried to get her to say "cheese"), but she didn't want to hear it. The tech was great, and assured me that they're used to this happening, so I didn't feel quite as bad. We did, however, have to restrain her, and I held her arms while another aide/tech came in and held her legs down. It was a quick scan; I'd say it took maybe 10 minutes, and we had about 10 more minutes in between things while the tech talked to one of the radiology doctors about the pictures (and, in the beginning, while she looked for someone to help restrain Judith so they could do the scan). She did cooperate for about half of it, and the tech gave her 2 Mickey Mouse Clubhouse stickers once we were done.
After her scan, we headed over to the CF clinic. We ended up being about a half hour early for our appointment, but it was nice because we were Dr. G.'s first appointment of the day. Judith was really, really well behaved! That's the 3rd appointment in a row that she hasn't pitched a fit while being examined, and I think it's a combination of her remembering and being comfortable with them. She was impressing them with what she was doing (checking out the cabinets under the exam table, and being cautious while backing out so she didn't whack her head), and also with how well she was behaving. At one point, Dr. G. asked her if he could take a look at her and listen to her lungs, and she kind of batted at him and said, "No." Hey, at least she was being honest!
Our appointment was a little longer than I expected, but we had a lot of things to go over. Dr. G. took another culture of her sputum, and we'll find out the results next week. I was honest with him, and said that I would be floored if it comes back clean, at least with the MRSA. I explained that getting her to take the bactrum was an absolute nightmare, and he said that we could actually try tablets next time, and I can grind them up and put them in applesauce or something else to mask it and hopefully get the dose into her. He said it's tricky sometimes because some parents really want the liquids, but I said it didn't matter to me and I'm willing to try any method to get her to take her meds. He made a note in her chart, so we'll give the tablets a shot next time! Judith's also going to be getting a prescription nasal spray to help with some of the secretions. Her lungs sounded clear (which is awesome!), so they think the cough she's been developing may be from drainage, and they want to try drying her up a bit to see if it improves things.
We got some mixed results with her ultrasound. The good news is her liver looks fine, and the elevated enzymes are more than likely from random viruses, which can cause those elevations. Dr. G. said that they see this from time to time, and they always want to check the liver just to make sure everything is normal. Judith's biliruben levels are well within the normal range, so what we thought was jaundice is more likely her normal pigment coming out. The bad news: she has a small kidney stone, which is not CF related, but most likely a residual preemie complication. While in the NICU, Judith was on lasiks a few times, which puts her at higher risk for kidney stones. So Dr. G. is referring us to a renal specialist for a consult, and we'll hopefully get more information at our first appointment. Her kidney is functioning normally, so that's a plus. We just get to play the waiting game for the stone to pass, and I feel horrible for Judith that it's going to happen eventually.
Judith will be getting a nutrition overhaul. She is so picky, and we need to restrategize to get her to eat some higher calorie foods to help get her to the optimum percentile (50th). This could be interesting, especially with a picky toddler!
The last thing we discovered is that they know what Judith's other mutations are. You read that right: they detected 2 other mutations in the genetic panel. We hadn't discussed her genetics in a while, and I never thought to ask, so I was surprised when our nutritionist mentioned the other mutations. I feel pretty relieved now that we know what I'm carrying, and we can use that information to move forward with her care. I want to do a little reading on the new mutations, and then I will write a separate post explaining it.
So overall we had a pretty good day and got some great news! We'll see what the culture results yield, and then go from there.