Friday, November 30, 2007

Rolling Stones

Noah's Rolling Stones that is....

My poor little man is in so much pain. He spent the whole day just crying and suffering. We were able to get his Surgical Consult moved up a week so his appointment is now on Tuesday. It just breaks my heart that he has to wait even that long. Plus, who knows if Dr. Downey will agree to remove it or when.

On a good note... I started using cortisone cream on his rash and it improved 100% after one day. So it must have been just eczema. I have it but very mildly. So maybe it's the meds making his worse, who knows. I knew it was dry skin on his head and face. I had been doing everything possible to moisturize it to no avail. But his tummy and arms looked like a different kind of rash. But the cortisone cream got rid of it so it must have just been dry skin too. Although.... yesterday Dr. Samson-Fang did ask us to switch formula "just in case" he was having a reaction to dairy. Which is completely insane considering I do not know one person on my side or Shane's side of the family that has any major food allergies, including anything lactose or dairy related. But... I figured it was possible that the C. Diff had killed his villi again! Which would make him lactose intolerant. So I bought the $30 small can of Formula that is neither Dairy or Soy (I got it from the Hospital's Outpatient Pharmacy). I was told it was possible he wouldn't drink it because it doesn't taste very good and with his oral aversions.... but he drinks it fine. And here's the thing... He's been screaming since he started it... but I think he was on his way there before anyways that's why we had the impromptu visit with Dr. Sampson-Fang. It also has a bit more fat in it than his other stuff which could upset his gallbladder. But here's the weird thing... since he started it, his poop looks more normal. Noah has NEVER had normal looking poop. I haven't seen mucous in his poop since he started it. And lately his poop is more mucous that poop. (Sorry if your about ready to vomit. I have learned that once you become a Mom, poop is a normal topic of conversation... fine, I'll admit it, it has ALWAYS been a topic of conversation in my family.)

Anyways... I should know more this Tuesday after his consult. But I must ask... Please pray for him. He is in so much pain. He just cries all day and I know he's suffering. Pray that the Doctors will be able to fix the problems and he will be strong and come out healthy and everything will go smoothly. I would really appreciate it. The thought of him having surgery this close to Transplant frightens me to death. And because of his delicate condition, he will most likely have to stay in the PICU for observation post surgery and the thought of him in any ICU or even being admitted to the Hospital again... scares me to death. I'm hoping I can keep it all together knowing how much this will help him. Heavenly Father has blessed him SO much already, I can't see the Adventure ending now. So I do find peace in that.


  1. Crystal, Your faith and positive attitude always inspire me. We're praying for Noah to get better soon and have some relief of his pain and discomfort. You're a wonderful mom! Love, Jen

  2. I am so sorry Noah is in so much pain. I will be praying for him.

    Anna was on progestmil post transplant too. Their little body's are so delicate, it just makes things a little easier. She also has eczema. My doctors don't think it's related to transplant and being immune suppressed, but I just know so many transplant kids that have it, it's too much of a coincidence.

  3. You are amazing Crystal. The things you have to go through and yet you keep so much faith and hope. We will all be praying your your family. Please let us know how things go and of course, let us know if you need anything.


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