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May. 10, 2009
The plot thickens
We've had some more bad news this morning. I suppose I shouldn't have been surprised, since this infection has been SO different in so many ways. Noah's triglycerides have always been very, very low. Normal is 100-ish and his are always well below that. This morning his night nurse told me that they did not hang his lipids (the fat portion of his TPN last) last night because yesterday's triglycerides were well over 400! No one got too alarmed, figuring that this HAD to be a lab error. They went ahead and stopped the lipids just to be extremely careful, but no one thought for a minute that those triglyceride levels could possibly be accurate.
Well, this morning, after going without lipids all night, Noah's triglycerides were still almost 300. This usually signals TPN intolerance and is often the first sign of a serious infection - but Noah's CRP (infection marker) was down even lower this morning! None of this makes sense. The doctor said that Noah's enlarged liver might be more serious than we thought and that the triglycerides could be a liver issue.
Noah's white count is still suppressed and very low. Again, not good, and something we would expect to see improving alone with everything else.
The doctor said that almost everything points to an infection that is being suppressed but not cured. The dropping CPR doesn't fit with the picture of a suppressed infection, but everything else does.
Noah once again has everyone baffled. He seems a little perkier at times, and hasn't had anything more than very low grade fevers for a day and a half+. . . but in so many ways he isn't actually getting **better**.
The doctor said that we need to focus on the positives right now (the CRP and temperature) while we work on figuring out what on earth is going on everywhere else. We haven't done a thing to figure out his dropping blood sugars - right now, if he is off TPN in order to run other drugs, we have to run dextrose (sugar) solution. At some point we will have to see if he can hold his own without the dextrose or TPN running. We'll also need to transfuse at some point when he is doing better.
To be honest, I thought we were on cruise control yesterday - once Noah starts getting better, he usually improves very rapidly. We've never had so many other weird things happening.
Because we still don't know WHY Noah is doing better, everyone is still being very conservative in terms of infection management. In addition to figuring out the "other stuff," he will need to be on these antibiotics until all of his infection labs are perfect, then for an as-yet-unspecified time to be sure they stay perfect. He will then need to be observed for some time after the antibiotics have stopped to be SURE that whatever this is doesn't come back. The last thing he needs is a relapse.
I think everyone is a bit frustrated by the complexity of Noah's current situation. The doctor this morning said, "Well, some things do look better, but the rest . . . well . . . ." and just stood shaking his head. The idea of liver trouble starting is like having a nightmare come true.
In all this, we take GREAT comfort in knowing that the Great Physician isn't suprised by these turns of events. The One who knit Noah together knows exactly what is happening and why. He knows what will happen, and He's promised to never leave us through it all. Thank you all again and again for your prayers and encouragement. If you didn't read about our Prayer Warrior Wall project in yesterday's post, please go back and read yesterday's post -we would love for each one of you to participate along with anyone else who prays for Noah! If you share about Noah in any way (your blog, your church, etc.) please let those folks know about our project. You are welcome to cut and paste the appropriate portion of yesterday's post as needed.
Two smiley thoughts (I think we need them!): First, Finding Nemo has become the soundtrack of my life. Noah wants it to play ALL of the time, and will crack open an eye while he is sleeping to be sure that it is still playing. The nurses' computers are identified by Nemo characters and he takes GREAT stock in seeing which computer comes into his room each time. They have to scan his bracelet with a handheld scanner (like in stores) each time he gets meds. He has learned to use the scanner and spends several minutes scanning everything in his bed each time he gets the chance. Second, our "old" dog Edison has come home to use from foster care. Noah talks about him every day, but since Thomas Edison isn't part of Noah's frame of reference, he calls the dog . . . . Medicine. :-) Makes more sense to him, I guess!
Blessings,
Kate |
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May. 10, 2009 - Sending prayers and blessings to you!
With gratitude for your constant inspiration,
Roni in So.Cal. <><