Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.

Thursday, February 23, 2012

Whirlwind Days

So much news for you today and I don't know where to begin.

I shall start with the not-so-good news first:
Willem has a spot on his lung that could be just about anything at this moment; the doctors do not know.  The major concern is that it might be a fungal infection which would be bad.  We will be meeting with the Infectious Diseases doctors tomorrow and they are going to try and figure out what it is.  The other not-so-good news is that Willem now has kidney stones.  Less of an issue but more on our plate.  His surgery to remove the kidney stones is already scheduled.

Okay... Now the cautiously-optimistic-good news:
Erin screwed up last night and forgot to unclamp Willem's drainage tube so nothing drained from his stomach throughout the whole morning; i.e. it stayed in his stomach.  Under all other circumstances this causes him to throw up because nothing gets through the stricture.  Well, thus far, it seems that Willem is the recipient of a small miracle:  Food seems to be passing through his entire GI system with no throwing up.  Thank you Erin for the goof.

I decided to keep him clamped this morning and test his gut by giving him some tomato soup. When the soup stayed down and in, I gave him a few bites of banana.  Willem then had a bowel movement (an excellent indicator that everything passed through the system).  During Willem's chemo therapy clinic today, I gave him some more tomato soup, 1/3 of a banana, 1/2 of a Saltine, and 5 froot loops.  It is now nearly 5 hours after the last go at solid food and it's still all staying in. Oh... He also had another bowel movement during clinic.  So what I'm looking for now is another bowel movement with different colors and smells.  Gross, yes, but I'm so excited.  His next meal will be a small vegan protein shake with fresh fruit, two small leaves of spinach, and 1/4 teaspoon of spirulina.  Very blended.  If all this stays down through the night, we've got progress -- we can take him off of the formula feedings and the TPN feedings (yes, he's doing both now).

After the agonizingly stressful and frustrating day of yesterday we really need this.  Willem needs this...  He needs this so bad.  To give you an example of how anguished he is about not being able to eat: I over heard him talking in his sleep about how his little sister ate his pancakes.  He can't even get any of his favorite food in his dreams.

If he lasts the night without throwing up, I'm going to make him pancakes in the morning.  And nobody else can have any.

3 comments:

  1. I eat spirulina on everything!!

    So glad he is able to nibble on things. Here's to pancakes in the morning. :) strawberry pancakes with whip cream are my favorite.

    You're family is chalk full of Heroes. One day at a time... <3. Xo loves.

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    1. Thank you. Where do you get your spirulina?

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    2. Www.nutrex-Hawaii.com. Best that we have found. I am sure you know it has to be stored in the freezer in an amber glass jar. We bough them in bulk (the jars) and had some extras if you need one or two. I can send them in the box I have ready to be sent to you.

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