4-6-12

We have had some really nice times with Claire the last couple of days. She has been opening her eyes during the day quite a bit and I live for those moments. She definitely enjoys it when the harpist has come to play for her and wakes up and looks around when she hears the music. She has also been enjoying sucking on her pacifier and also the cotton swab of milk that she gets a couple of times a day. They call this "oral care"- when she gets to taste the real deal. Today I was able to hold her for the first time in almost 2 weeks and, as you can probably surmise, I was over the moon. She has been very fragile but seems more stable now at least in her heart and oxygen levels that we could give it a try. Best hour I've had in a while. She settled right in and seemed to know that it was a safe place. Plus, she hadn't been on her tummy in a long time and I'm sure it felt good to her to have a change.

And though she be but little, She is Fierce.

Now for the medical side of things. Hope you get all of this because there will be a quiz at the end. Claire has been a little less "puffy" lately and that is nice to see some of that edema subsiding. Her blood count is looking okay, but they are giving her some blood today- I believe because her own volume was a bit on the low side. They tried to start doing some feeds yesterday of the Neocate formula (a very basic, already broken-down formula) and she wasn't digesting it very well. Today the doctor is trying to do a continuous feed drip so that she gets a little bit every hour as opposed to a larger amount every three hours. We'll see if that helps the digestion. The doctor also ordered another "Elastase" test to check her pancreatic function as the first of these tests showed almost no function present. The result of this test will be in next week sometime. If she gets up to having more feeds, they could give her pancreatic enzymes to help her with digestion.

The biggest change today is beginning a medication called Decadron which helps to combat inflammation. Her chest X-rays have been getting a little worse every day for a while now- meaning that they are showing increased cloudiness in her lungs. This cloudiness could be fluid, inflammation, some blood, or probably a combination of these factors. She also has not made much progress in being able to wean the ventilator settings. Although we are grateful that she does not seem to be backsliding, she hasn't shown the improvement that we or the doctors have been hoping for and the increase in cloudiness is concerning. The Decadron will be given for 5-7 days with the hope that it will knock down the inflammation and allow them to lower the settings on the ventilator and perhaps be able to go back to the other, less intensive ventilator. This is the "typical scenario." Dr. Nicholson hopes that it will give her some time to heal her lungs and make some headway. Lets hope that this will be the case. It may also be that any improvement could be temporary and that, once the medication is stopped, the symptoms could return. One other thing to note about the medication is that a side effect is lowered immunity so they will be carefully monitoring for signs of infection.

Of course the frustrating thing is that we do not know the cause of her symptoms- a frustration that Dr. Nicholson continues to voice and is something that is always on our minds. She says that it is hard to know the best way to treat or support Claire when we don't know the cause of the problem. The genetic test results are still a while off, however, with the syndromes that they were looking at it would be unlikely that a diagnosis would change the treatment or support that she is currently receiving.

Finally, the "extra" blood vessel that is going from her heart to her lungs is still open. The echocardiogram also revealed a small narrowing of her aorta. At this time, Dr. Nicholson and the specialists recommend letting the extra vessel close on its own because closing it now could put increased pressure on the narrowed aorta.

Quiz:

#1: What is the best place to eat around Providence?
A. The cafeteria
B. Pizza Schmizza
C. Five Guys

  A: Five Guys