Sunday, March 27, 2011

Charli 2, accumulation 0

So, yet again, there it is. And there it goes. It's like a tide. Except a big, engulfing, horrifyingly scary tide because you don't know if it is or is going to result in failure. Really it's a giant pain in the ass.

So two days in for observation of the "accumulation", 2 CT's and Shunt series' later... the cause is abdominal distention/abdominal processes. Ok. so off we go home, satisfied (sort of) that it's just poo causing our pocket.

Until the night before last, when the vomit happened. Followed by the spike in temp to 102 (which is the highest she has EVER been) She was with daddy when it happened. As the day progressed so did her whimpering, irritability, and decreased appetite. Off to the ER. This time I wasn't there....I had a blinding (or still have I should say) migraine, so I stayed home not convinced that this was a neuro issue. Bags packed in the event I get a call saying surgery, or admission. Well, admission happened...but Larry was kind enough to stay. The were admitting to give fluids and observe. I walked in this morning to a playing monkey who gave me a bright cheery "Hi". They got an IV on the second shot last night (go Stephanie!), she had yet again another CT/shunt series which still showed no neurological changes, but changes in her abdomen in terms of pressure/gas/stool. (lovely, right) Once again nsurg is convinced that this is not a shunt failure, but just ICP changes due to increased abdominal pressure. Blood cultures and urine culture pending....Dr Brand said if the UA was clean we could go home because he wanted to minimize her hospital time. We all agreed. So they straight cath'd her (never a good time) and the UA was clean. So my monk went home with daddy to play with Mema and I could try to sleep off this migraine. It's getting to be really annoying..just when I think I'm good it's back. I'm currently biding my time so I can go to bed. It's only 545. And I'm ready for bed. The last several days have tapped me beyond belief. And we have A LOT coming up.

We have Detroit which is obviously the biggest, she has her evals for CPSE (IEP) and the tour of her new school, pedi appointment tomorrow with Dr. B for hospital follow up. Thank God for him that's all I can say. I think I texted him 5 times yesterday, talked to him on the phone twice, and there he was this morning ready to see her. Then I bumped in to him at Dunkin Donuts and he offered to buy my coffee. I'm pretty sure he is an Angel here on earth. I know we are with him for a reason. I can't say enough good things about him. Or the office (especially Danielle) and Precious who must be out having or have had her baby (yay!) because she hasn't been there the last few visits/calls.

I cant wait for Detroit. For as much as I'm not looking forward to making the drive, I can't wait to see everyone. And knowing Dr. Taraman is leaving this summer I am so thankful that we get to go now and see him one last time.

Well, my migraine is telling me to get off the computer, but I just wanted to give a quick update as to our week. Saturday was Purple Day for Epilepsy btw in case you didn't celebrate and rock out your purple. Ours didn't end very well with a hospital admission. I'm thinking Purple Party next year. Perfectly Purple Party. Cuz we have to make up for this year. And a party sounds like a good idea. Plus it allows for cake. That is always a plus.

Purple Rules. Just sayin...

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