More improvement and “foo” vaccine interviews

The latest lab results back up what we’ve been suspecting for the past few days…Adela is feeling better.  With the last batch of tests, we found that her nutrition is improving and inflammation is going down.

Two of the key things they look at for her nutrition are her albumin and transthyretin (prealbumin) levels.  One of the ways to look at this is in that albumin is a measure of nutrition over the past two to three weeks while transthyretin is more a measure of nutrition over the past two to four days.  Normal albumin levels are 3.5 to 5 g/dL — she’s at 2.8 g/dL, so still a bit lower than normal.  Normal transthyretin levels are 16 to 30 mg/dL — she’s at 30 mg/dL, right on target.  When she was admitted, her albumin levels were less than 2 and transthyretin was virtually undetectable.

As for the inflammation, the steroids seem to be making progress in reducing the intestinal inflammation.  Not much to say on that front.  The only downside is that the steroids seem to give Adela night sweats and mood swings.  Yippee…mood swings in a hospitalized anxious toddler who’s paranoid of doctors.  What more could you want…

She’s been pulled off the two remaining antibiotics since her condition is improving to the point they think the cost/benefit tradeoff is such that she’s be OK without them.  We’re still on the antifungal, although at a lower dose, just because they need to step her down off of it.  An added benefit is that this means no more being woken up at times when most sane people are fast asleep by the loud IV pumps beeping to tell us that it’s done infusing the medicine.  Now it’s just waking up at 12:00 midnight and 4:00 am to get her vital signs (heart rate, respiration rate, blood pressure, and temperature).

Last week she had a “metabolic cart study” test.  I don’t know what the real name of the test is, but basically it measures the amount of oxygen you inhale versus the amount of carbon dioxide you exhale to calculate how quickly you burn fat.  Rather ingenious way of doing it.  It involved Adela wearing a mask for fifteen minutes that was hooked up to a cart they wheeled into the room with all the equipment on it.  She really surprised us and kept the mask on the whole fifteen minutes despite being anxious about it.  It was to try to figure out if the amount of fats they were giving her was too much or too little — the target was to give her the maximum amount that her body could process, but not too much.  The results came back today and it looks like they’re right on target with giving her the right amount.  However, that said, she’s getting a bit of a belly on her right now from all the feedings…they said not to worry about that right now.

She’s been out and about in her red wagon more and is walking more with less help than before.  We’re still a little weaker than usual, but we’re improving.

And today we had to say goodbye to “Dr. Blueberry” (yes, we’ve changed his name for his own protection 🙂 ).  He was one of Adela’s doctors since we arrived and he’s rotating off to go on ER duty.  I know Adela will miss him — despite her constantly asking “Why is he here?” and “Can he go now?” every time he came into the room.  He provided us with medical care while we provided him with plenty of ham humor.  Hopefully he won’t be able to eat ham for a while without thinking of Adela.  Thanks “Dr. Blueberry”.

Now on to the fun/interesting news.  UNC Hospitals is pitching a news story to the local news outlets about how parents of children who can’t get the flu vaccine should get the vaccine themselves.  The idea is that if you reduce the risk that the parents will bring home the flu, it can reduce the risk that the child will get the flu (at least from the parents).  Well, guess what family fits their profile…yes, it’s us.  Adela can’t have the flu vaccine partially because they don’t want to throw anything else into the mix while she’s sick but also because the flu vaccine is cultured in chicken eggs…which Adela is allergic to.  Now, to be fair, some studies say it doesn’t really make a difference whether you’re allergic to eggs or not while some studies say you really shouldn’t risk it.  Guess which camp we’re in.  Anyway, vaccination/allergy lesson aside, we’re going to be on TV.  Turns out that WRAL (one of the local news stations) will be coming on Wednesday afternoon to get some footage and some interview clips for the local news.  The News and Observer (a local newspaper) and a local radio station may join in too.  So, Daddy, Mommy, and Nana will get the flu vaccine on camera while Adela watches all the excitement.  I’m trying to get Adela to say, “I can’t have the flu vaccine because it’s made from eggs.” for the interview.  It’s cute, however, because when she says it, it sounds like we’re getting the “foo” vaccine.  I figure it shouldn’t be too hard since she’s started repeating the doctors’ orders — things like “we need to reduce the fat in her TPN” she’ll repeat verbatim.  We’ll of course post links to the stories after they’ve aired or gone to print.  We don’t know when they’ll actually run…we figure it will probably be at least a day or two after the interviews.  Mommy wanted the title of the post to be “no egg foo mung for me”, but since Daddy’s the one posting, I got to overrule the pun (only because I couldn’t think of a better one myself).