Friday, July 22, 2011

One cranky baby

You guys - the past several days have been painful.  See that face?  I have been seeing a lot of that face the past several days (and you can totally see her two bottom teeth in this picture!).  Luca has been SO cranky.  She goes from smiling to wailing like the flip of a light switch.

Then, she started refusing night.  For the first time ever on Wednesday night, she just outright refused to go to sleep.  It was like someone had given her a shot of caffeine. She was wide eyed and squealing, but in the same instant rubbing her red sleepy eyes like it was her job.

She is exhausted.  You lay her down and rub your hand across her head and she immediately sighs and closes her eyes.  You leave the room, and within minutes she goes from whining to wailing, to whining to wailing to get the picture.  We go back in, settle her down, then it repeats.

As of Sunday and Monday, we thought, "maybe more teeth are coming?"  But that thought has quickly been squashed.

She has had a horrific splotchy rash off and on that we immediately recognize as one of two things: either she is about to spike a fever (she has ALWAYS gotten a rash around her neck and back before she spikes), or her anti-rejection medicine (prograf) level is too high.

Since we are on day 6 of sleep issues accompanied by the rash and crankiness, we think it is the latter of the two options.  And I have been taking her temperature several times per day and she has been consistently stable (thank God!).

Typical symptoms of high prograf include headache, irritability, nausea, vomiting, insomnia, among other things.  And Luca - has all of these symptoms.  (In the past when her prograf level has been too high, she has gotten the rash so we know that that is a symptom for her.)

We had blood drawn at our house on Monday and were hoping to find out results on Tuesday.  Well, Wednesday we learned from our home-nurse that the lab messed up or something so they had to come back yesterday, Thursday, to redraw the labs.

Meanwhile, Luca's symptoms have gotten worse throughout the week.  And today, today is bad.  She is miserable.

The worst part is, that while we wait for results, I have to continue giving her the same dose of prograf every 12 hours.  Which means that as I give it to her, I cringe because I know her symptoms will just get worse in the hours following another dose.

You may be wondering why this test takes so long to get results.  Well, normally we go to the hospital to get her labs drawn and we get the results the same day.  But the blood has to be drawn at 9am (1 hour prior to her next dose) which means we leave our house at 6:30am to be there by then.  It means packing her feeding pump, meds, food, extra clothes, food for me, and me pumping on the go.  It is a lot of work just to walk in for 10 minutes to get blood drawn.

So recently we asked that if she just needs blood drawn, can we get it done at our house?  They agreed to doing this but because the blood has to be taken to an outside lab company, it means the results take at least 24 hours.

If I have not gotten results by lunchtime, I am making some calls.  My little babe is clearly uncomfortable and we need results ASAP.

You know the saying about a cranky mom makes for a cranky household?  Well, I disagree.  A cranky baby makes for a cranky household.


  1. Oh that face :( Poor thing...I hope you get the results soon (does it come from your doctor?)

  2. Oh no! I'm sorry you guys are having such a rough time. We've never had a reaction like that to a high prograf level. I wish I could help or offer some advice. Praying for some peace for you guys!

  3. Ohhhh big huge hugs to Luca!!! So hard to see babies having a hard time :( I really hope you get the results ASAP and it can be fixed!!!!

  4. That is one cranky face, but still so cute!


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