What We've Been Up To

It's been a crazy last few weeks!  Our house officially went on the market a week ago, and we were able to start the fun part of the process and look at real estate.  It's been crazy busy around here getting things prepped, but the house looks fantastic.  Now I'm at the point where I'm in "maintenance mode," feeling like I live in a museum, but I know it'll be worth it in the end.

Amid all of the chaos, Judith came down with a summer cold, causing her MRSA to flare, and was gracious enough to share her germs with me and my mom.  Her team put her on bactrim right away like they always do, but go figure now she's wised up to the crushed pills in her Pediasure and was fighting us with drinking it.  I'm hoping that in another year or 2, I can start to teach her to swallow pills so she won't have to worry about the nasty taste from the antibiotics.

We've also been using the new vest, and we seriously LOVE it!  Judith now has the independence and control with it that I really think she wanted with the other vest, and even though I still need to help her put hoses back on if she unlocks it mid-treatment, the majority of the time she can handle it herself with minimal help (typically one of us has to support the hose so she can lock it in place).

Making our lives even easier was the arrival of the Raksog cart!  I'm seriously glad that so many people recommended this cart, and that we have a vest system that I know would easily fit into it!  It took some tweaking to get the middle shelf placed at the proper height so I could get the generator in and out of the bottom shelf, but overall the cart was easy to assemble.  I bought 2 plastic "woven" storage baskets at Lowes (a perk, because they're super easy to clean) that fit beautifully in the top shelf, and Judith's meds and neb supplies now reside in those.  Her nebulizer is housed on the middle shelf, along with her vest, and the generator is on the bottom.  The one thing I want to do is try to find some hooks that will hang on the side of the shelves so I can hang the hoses on them.  Currently they're draped over the top of the cart, and that works, but I'm thinking hooks will make things look neater.

Culture Results

I figured that there wasn't anything new growing since it's been a week with no alert, and Judith's latest culture results confirmed that.  She's still growing her usual MRSA, but that's it.  So while we want the MRSA to at least turn into MSSA, or better yet, completely disappear, that's not a bad culture overall and it could be more stressful for us.  At this point, I'm so used to the MRSA being present that it doesn't phase me anymore, and Judith's not symptomatic unless she's sick, so I'm not as concerned as I would be if she was constantly symptomatic and in need of a strong eradication plan.

Reculture and Ultrasound

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.

2013

What better way to start the new year than an impending throat culture?  Sarcasm aside, I know that we're going to be taking Judith in for her reculture sometime very soon.  I called our nurse coordinator today to get a better handle on what's going on with the liver function tests, to see when we need to do the culture, and what we should do about the antibiotics.  We still don't know a lot, but I feel better after this phone call than I did a couple weeks ago when we got her lab results back.

Judith's pulmonologist has a packed schedule, but they're going to try to squeeze her in.  I said that we were having a hell of a time trying to get the bactrum into her (so far she's probably taken a few full doses, but most of it is spit out, much to my chagrin), and that we've exhausted practically every technique we could think of: trying to mask it in pediasure/other beverages, masking in various types of food, pinching her nose, wrapping her in a towel to help hold her arms down (also serves as a great medicine catcher) - you name it, we've tried it.  Each time she's prescribed bactrum it gets progressively worse.  Whether it's the artificial grape flavor, the actual medicine (which smells like crap, so I can only imagine how it tastes), or a combination of the 2 remains to be determined, but at this point it doesn't make much of a difference because she flat out refuses to swallow it.  I'm sure Judith's not the first toddler to completely battle a medication, and I do think we've been relatively lucky with her compliance with meds and treatments, so I guess a battle with some things is inevitable.  Anyway, Dr. G. said that he would prefer to see her and listen to her lungs when we do the reculture to check things out.  I know this is going to make it trickier to schedule, since a reculture would be a quick nurse visit, but they'll work it out and will call us with a time.

One of the bigger reliefs for me is they want to do the liver ultrasound at the same time.  They know that we took Judith to the urgent care facility because she was looking jaundiced, and even though we said she doesn't look nearly as bad as she did a few Saturdays ago, they would rather do it now instead of waiting, just in case.  So instead of waiting a few months for her next regular visit to get some answers, we'll hopefully be able to get a better idea of what her body's doing in a few weeks.

Culture and Lab Results Are In

We have mixed news this time, and probably won't have answers on a couple things for a bit.  First, the good: Judith's blood work mostly looks good, and her chest x-ray is normal (something Dr. G. is very pleased with).  Somehow the lab forgot to check her vitamin D levels, so we'll have to get that checked the next time she has blood work done.  It's not a crucial thing and can wait.

The bad news: her liver levels are elevated for the 2nd time in a row, so Dr. G. wants her to have an abdominal ultrasound to check things out and to get a baseline.  We'll run that test sometime before her next appointment, so we'll have to wait to find out more information and to get an idea of what's going on in there.

Throat cultures weren't as good this time.  She had 2 clean cultures since her first pseudomonas infection last April.  I was really hoping for a 3rd clean culture, but luck was not on our side.  Her lungs are culturing MRSA, so we're going to do a round of bactrum and see if it can eradicate it.  The nurse coordinator explained that, just like with the pseudos, they want to try to catch and treat a MRSA infection quickly so it doesn't become a more serious issue and so they can reduce the amount of potential damage it can do to the lungs.  I did give her a head's up about Judith's 2 MRSA infections in the abscesses over the summer, just in case they wanted to move to a stronger antibiotic.  Since the cultures for the lungs are slightly different than the skin cultures, she said they can still try the bactrum and take it from there.  One good point we discovered from the culture is she is still pseudo-free, so at least we don't have to worry about that on top of the MRSA.

I hate that when it seems like she's doing well, something else crops up to slap us back into reality.  It's frustrating.