Friday, February 22, 2008

A Rejection Scare

I am exhausted!

I had to take Noah up to the hospital today. We figured he had ear infections and to play it safe we figured it was best if we verify it rather than just calling in an Rx. Well, it's a good thing we did cause it wasn't his ears.

So we called Cardiology and Dr. Everett wanted to see him right away. So we (actually ME carrying Noah's heavy car seat, my purse, and the diaper bag cause the stroller was in the other car) walked over to PCMC. He had an Echo which took forever because they kept wanted to redo it different shots since they looked different than last time (of course THAT was nerve racking) then we had an EKG and blood pressures, then we had a chest x-ray.

Everything was fine. In fact, his heart wall is getting thinner finally. So it's NOT rejection. But it was a good 3 hours of silent panic.

So, since something is still definitely wrong, we did an abdominal ultra sound too. Just to make sure his liver was ok and there weren't any stones left behind. We checked his kidneys, pancreas, liver, bile ducts, etc. All was fine there too.

So, we still have NO idea what his deal is. But we are going to go check tons of labs and his med level again on Monday.

They test his Cyclo level using a different method now. And they say it's about 20% lower than how the old test would show but when we were doing both it was always more than 20% lower. Well, right now Noah is sitting at 80 on the new test. He needs to be 100-150 on the old test. So he is sitting at 100 if the new test really is 20% lower. But since it's normally a little more, we are going to raise his dose.

I know Denver likes to keep the med level as low as possible and Primary's keeps them MUCH higher and I don't want to raise them to PCMC levels, but I don't want him sitting on the lower threshold right now either. I figure it's better to be slightly higher during this first year then after that, go for the lower end. So we are changing his dose a bit. Which makes me feel better.

But once Denver shows his one year cath and echo are all clear, I am going to try and keep his meds at the lowest dose possible to avoid the nasty side effects and kidney damage.

Anyways... I'm tired, Noah was so tired he has been asleep since the moment I put him back in his car seat. And while we don't know whats wrong just yet, at least it's NOT his heart.


  1. Isn't the fear of kidney damage great. We are on cellcept and not cyclosporine. We are having issues right now with his tacrolymus level being low. (his prograf) Our doctors want it between 3-5 and his is not even detectable according to one lab and 1.5 according to another lab. So we have increased it gradually over the past few weeks from .4 ml to .7 ml as recently as today and we are going to be sending the testing to the same lab nest week when we get our blood draw.

    Good luck. Have they tested for CMV and EBV? We were told that CMV can mask itself like a cold and you wouldn't even know it was there unless you did specific tests for it. Just a thought.

  2. I'm so happy it's not his heart. I all goes smoothly on Monday! You are in our prayers!

  3. I'm glad to hear that its not his heart, I bet that was the nerve racking not knowing whats going on hopefully nothing to big. I hope all goes well on Monday.

    Mike & Family

  4. Cystal,
    WOW, what a scare you had. I do hope that they are able to figure out what the issue was, but it's great to read that it's not a rejection issue.
    I still have that Bear of yours for Noah and so next time in SLC, I will contact you and bring it by. I would LOVE to finally meet you too.

  5. So glad he was not in rejection! How scary! Prayers for Noah to feel better soon!

  6. Good news that it isn't his heart. I can't imagine what it is like going through all of that. I keep you all in my prayers.

  7. I was so glad that you texted me and told me you had gone much as I wanted the company! :)


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