Sunday, September 09, 2007

No, I don't play a neurosurgeon on TV...

But, I might as well as familiar as I am becoming with medical terminology lately. Let's just say that I've become a dedicated advocate for Cara and her medical care. We have survived surgery--$21K worth--followed immediately (seriously, we were home for a whole 3 hours) by an ER visit due to projectile vomiting, which, of course, stopped the moment we walked through the ER's doors. The diagnosis for said projectiling? Cara's brain and it's connected parts hadn't gotten used to the change (less) in pressure in her brain due to a working (thank goodnes, no malfunctioning) VP shunt. Her neurosurgeon said to give it a few days and see if she wasn't better. By golly, he was right! Thank you Children's Hospital for that lovely 12 hour wait in the ER to be seen by a neurosurgery resident, CT scan with the dolphins on the ceiling and chicken puppet, and $6K bill. You can't put a price on a peace of mind.
Since this episode, Cara has been doing wonderfully. I continue to be amazed at how quickly she recovered from a having something permanently implanted in her skull. Our little trooper only needed a regular dose of Tylenol for the first day and a half! She was back to her normal self--even a bit more happier and less fussy. She has started to do an "Army crawl" when she wants to reach something and is vocalizing up a storm. Still, she is behind developmentally--not crawling, walking, pulling herself up, etc. So, being the advocate that I am, I spoke with the Physical Therapy/Occupational Therapy (PT/OT) department at the hospital and we have what is called an open-clinic evaluation on September 26th to see which services she might benefit from. I also need to ask about a speech & language pathologist to work on helping Cara learn to talk. I am so excited to hear her say "Momma" or "Dada" for the first time. Hopefully, with some techniques and strategies from the PT/OT people, Cara will catch up by leaps & bounds and will continue to be the happy little toddler who always has a big smile on her face.
She also has a follow-up CT scan in October to check the placement and functioning of her shunt and then will see her neurosurgeon right after for a follow-up with him. So far, so good, so I am hoping this appointment will be brief.
Let's just say that we will know our way around Children's Hospital like it was our own backyard and I will be shooting off medical terms like Doogie Howser. I am determined to become just shy of an expert on all things related to hydrocephalus so that I am certain that Cara is receiving the very best care that she can get. Thankfully, I have found a few moms who have already been down this road of whom I can ask questions and receive advice. One such mom, Sarah, has been so very helpful and patient in answering my 50,000+ questions. She has a beautiful and amazing daughter herself and is also quite the knowledge source and advocate. It's so comforting to know that I'm not alone--that others have gone through this and their children are doing so much better as a result. It gives us hope for Cara, that the future will bring nothing but the best for her. But, even if she doesn't move forward from where she is right now, we are okay with that and will love her nonetheless. She will always be our Bubba (and Peanut and Cara Lou) and Lulu Bird (don't ask how Ben came up with that one) regardless.

3 comments:

Judy said...

Oh my goodness, Laura...I have been thinking about you guys. Just reading this gave me chills!

I'm so glad everything is working out for Cara. You are still in my thoughts and prayers.

Lauren said...

Laura! Thank you for the update. I am so glad to hear Cara is doing well. She has been on my mind. Everything sounds very expensive, but you are right, you can't put a price on peace of mind. Good for Cara on her army crawl, that's exciting! Please update us as you have more info. and time. I'm thinking of everyone.
Lots of Love,
Lauren :)
P.S. SO happy the wedding was wonderful and that you have been having some good times after so much stress.

Mary said...

Thank you for the thorough recitation of all things concerning Cara and her recovery from surgery...children are amazing at recovering from these things...you are amazing too in your becoming so learned in her condition and dedicated to getting the very best care for Cara. You are doing a great job...Cara is lucky to have you and Ben for parents and I know you feel fortunate to have her in your lives.

That's nice to have Sarah to help with advice and questions...good news.

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