Liz is sick. There, I said it

{This photo was taken on Liz's birthday.... she was excited to open a gift and find a cute apron, hot mitts and a new cookbook. Liz loves to cook!}

I haven't wanted to blog lately, but I need to catch up because I have fun and adorable photos from the girls' birthday and trip to Disneyland. For today though, I will just update on our appointment for Liz yesterday. I am frustrated and nervous and, for the first time in a long time, I am officially concerned about her. I have definitely had times of being worried about her, but it has been years since I have been so concerned. It is an awful feeling and matches how helpless I have been feeling lately. I have said it before and I will say it again- I would walk a thousand miles, carrying her, if I had to in order to get to a place that could make her better. To sit and wait....and wait and wait, leaves me powerless.

You all know she has had the CDifficile infection since April, when she was hospitalized. She has been on antibiotics since April. She had a course of Flagyl that she finished right about the time we realized that her body was having an allergic reaction to the drug. Even though she has taken Flagyl in the past, last year in fact, for CDifff, and hasn't had a reaction before, this last course was enough to start the reaction and she is now not to ever take the drug again. After Flagyl, she has been on the hard-core drug called Vancomycin (Vanco.). She's had 3 courses of it....3 weeks each time. She finished her last 21 day course yesterday....and still, she has CDiff. This infection just won't die. Remember, we all have CDiff in our gut, but some get the CDIff toxin/infection once your Flora balance is off either after taking an antibiotic (meds kill the bad stuff, but also kill good stuff-the flora- in your gut that keeps things like CDiff from growing out of control and becoming a toxin) or from contact or a low immunity/being immunosupressed. 80% of people who get CDiff take (usually) Flagyl and are fine. 20% of people have a recurrence later in life and a teeny, tiny % of people have a third occurrence. Elizabeth has had this 3 other times, and is very unique in that she has been unable to fight the infection this time. 4 months of CDiff is pretty unheard of.

Anyway, we met with the Infectious Disease doctor yesterday and her GI doc was able to "attend" the appointment on the speaker phone. Both agree that because she is still having bleeding and has tummy pain and nausea, the infection is still active (duh!). They want her to do an additional 3 weeks (!!!!) of Vancomycin using a tapering system. Instead of taking the drug 4 times a day as she has been, she'll do twice a day for a week, then once a day for a week, then every other day for a week.
Vanco is scary and I asked the doctors if they are concerned she has been on the drug for so long....blatantly, they both said yes. She is at risk for developing VRE, a Superbug ironically caused by taking the Vancomycin...it is nasty and serious and is resistant to many drugs. It makes me sick just thinking about it. She must be on an antibiotic though to treat the CDiff and the only other drugs that treat CDiff (there aren't many!) haven't been tested on children and the doctors think that the risks of using one of the untested drugs outweigh the risk of VRE right now. It's like a game of chance in some way. I am happy that the Infectious Disease doctor we have been seeing took Liz's case to the rest of the team, so there have been many contributing opinions, data and options.

Liz has had a rough, rough week. She is exhausted. I have never seen her so tired. This is caused by three things- she is fighting a bad infection, she isn't taking in many calories, and she is anemic (because of losing blood in her stool and not eating). She needs to start on iron, but unless her fatigue or coloring gets worse, we'll wait two weeks to have her start on iron. Iron can upset the stomach and the docs need to be able to tell if her pain is getting better, not masked by pain caused by iron. In 2 weeks, she'll have a special set of labs to test her ferratin levels and also how her red blood cells are functioning.

She also started taking Periactin. This is a drug used to treat allergic reactions, but one of the side effects is an increase in appetite, which is why it has been prescribed as a stinulant for weight gain. We are all hoping she will at least become more hungry and start eating more so she can gain weight.
The last week has been her worst as far as intake of food and fluids. She either refuses to eat because she isn't hungry, gets nauseous at the sight or smell of food, or she gets a sudden urge for a particular food and once in front of her takes a bite ot two and says she is finished. So frustrating! The doctors did give her a stern warning about at least drinking or else being admitted and she has been trying to do that.

She's been on Zofran for the last 3 days, as she's had bouts of dry heaving. Zofran, and the Periactin both cause drowsiness, so combined with her anemia, she is a zombie. I am so relieved it is summer because she wouldn't be able to function well in school.
If, in three weeks the CDiff hasn't cleared, or if she continues bleeding (rectally or in stool), we will be forced to go to another drug and further treatment. Se tested positive for blood tonight, which makes my stomach churn. Also, if her abdominal pain and nausea persist (this has gotten worse rather than better over the last 2 weeks) and if she isn't taking in much, she will have a series of pictures taken of her small intestine, ect by doing the pill camera study (swallowing a pill that contains a camera, which takes pictures as it makes its way throu the body. It can see an area that is unable to be seen via endoscopy or colonoscopy.

So, that's it... Elizabeth is pretty sick. There, I said it. I am concerned. Her doctors are concerned and calling ME often enough that I know they feel the need to manage her closely (which they have all said). And we all just need this to be over. To say the next couple weeks are important is an understatement. We need the Vanco to finally work. We need Elizabeth to not develop the VRE infection. We need her to at least drink more and to take on more calories. We need Liz's counts to come up. We need to have her well and move on from this, once and for all. We need normalcy. We need many things.