Monday, February 22, 2010

Close, but no cigar

Not today anyway. The plan, which I have not really discussed much for superstitious reasons, was to go home today. Beginning Saturday, M started having fussiness and abdominal.......issues (I'll spare you the details). The abdominal issues have resolved, the fussiness has escalated to epic proportions. A shunt tap today yielded results consistent with a shunt infection. An EEG revealed many sub-clinical seizures during the course of the test. Labs revealed a sudden, dramatic elevation of her liver enzymes. That's a lot of crap (for lack of a better word) to find the day you're supposed to be discharged after a two month stay in the hospital.

More tests, more discussion, pediatric hospitalist consult, blah blah blah. I spent the entire day preparing for the worst, but hoping for the best. We got it, the best that is, in the form of a severe bilateral ear infection. I know most people won't understand this, but I nearly jumped for joy when those words were uttered. Okay, yes, I feel terribly sad for M that she has to endure such pain, but seriously, an ear infection - that's so....NOTHING! This girl has had 14 brain surgeries in the past 4 months. She has had 3 brain hemorrhages. She has been in the hospital for 6 of her 7 months of life. An ear infection? We can oh so happily manage that!!

There is still that chance that she could have meningitis brewing again which would lead to the shunts being removed, ventriculostomies placed, antibiotics for two weeks, new shunts placed, etc. etc. Essentially, we would start over - AGAIN. Our neurosurgeon feels quite confident at this point that that's not the case. We sure as hell hope he's right!

As for the subclinical seizures, as many as she had today during her EEG could definitely cause irritability, confusion, and lethargy. The neurologist increased her Keppra and hopefully we will find a nice, stable dose for her.

M will get an abdominal CT tomorrow to rule out any liver problems or infections. As many VP shunts as she had fail and the 2 that were consecutively infected could mean that something is/has been brewing down there.

So, we're close - as Kevin says we're just "perfecting", tweaking things so that when we walk out of these doors we will have absolutely no reason to come back anytime soon.

Yesterday, we took E to the model railroad show in town. It was pretty incredible. What a fun (and expensive) hobby! He is a train junkie and enjoyed it so much. I think he really felt special that he got to have Mommy AND Daddy all to himself for a few hours. Truth be told, Mommy and Daddy enjoyed it quite a lot, too!! I so look forward to the day when we can do something with our entire family.

Last night I was pleasantly surprised to find new pictures of our beautiful, K, courtesy of the traveling Kyrgyz mamas. She's so big and still so bright and happy looking. She is one strong girl, I have no doubt about that.

Hopefully tomorrow brings good news for me to share. Sorry for all the picture-less posts lately. I can't upload here and I haven't been home for more than a few hours at a time this last week. Precious time that is best spent cuddling with a snuggly, silly, little monkey. I promise I'll catch up as soon as I can. :)


janiece said...

I think I would jump for joy too over bilateral ear infections. Humm, I wonder if she is growing and that's why the keppra needed to be increased. I've seen that happen.
Saying prayers!

Tiffany said...

I certainly understand your joy. I had to take my sone to the ER Saturday and family and friends were asking about him and I said "Oh it's just a double ear infection!" That translates into: "Thank God it's not a shunt malfuction!"