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Thursday, December 03, 2009

Home Again

Ellie came home last night. We did get the MRI. They tried it with her awake. There is the quickie MRI like I mentioned. Ellie didn't like it one bit and ended up getting upset even with Mama in there with her. They had to put a cage like contraption over her face. I don't blame her for hating it. But they managed to get a few images of her ventricles that will establish a baseline for this new imaging going forward so we can avoid CT scans. The good news is that there was no change in her ventricles. Dr. Gumnerova is out of town so the neurosurgery team and Ellie's amazing pediatrician did not want to tap the shunt. Ellie's shunt system is so complicated that it's like balancing a dime. No one wants to mess with it.

The other thing was that instead of being lethargic, in pain, sleepy, and nauseous for 2 - 3 days Ellie felt better after 12 hours. I am not sure this was the fact that they gave her Zofran or IV hydration and electrolytes or that the Periactin was kicking in. Ellie's pediatrician in the Thanksgiving week had time to reconsider the Diamox trial and that is off the table - thankfully.

After all that we came home last night late with a script for Zofran (anti-nausea) to give Ellie at the onset of any symptoms and a whole list of follow up appointments to make: New neurologist who is a clinician versus a researcher and who runs a headache clinic - yay for engaged neurologists as it has been a long time since we have had one, GI doc check in on the weight loss, GI surgeon rescheduled appointment to see if Ellie's G-tube site needs to be closed and a new one put in, checkin with Dr. Gumnerova, follow up with pedi. Lots of calls to make and scheduling. Did I mention I could really use an administrative assistant?

It's a lot to manage.

Her pediatrician also convinced me to give Ellie the non-live version of the H1N1 vaccination. I thought I would come clean with that. We had been holding off with NO intention of giving it to her. He made a good case for her getting it though. And she has lost so much weight and her reserves are so low, and Dr. C, who is NOT inclined towards sensationalism in any direction said that 400 children have died this year of it already. He thought the consequences for Ellie would be "devastating". Dave and I discussed it and chose what we assessed to be the lesser of two evils. The child in me is complaining, "I don't like the Two Evils game!" and I have to agree. I know for a fact that I would like even less to lose my little one, my sweet girl. This is in no way advice or recommendation to anyone reading this regarding H1N1 vaccinations. We have been giving her vaccinations slowly over 7 years. She still has not had pertussis. We are very cautious about them and have given her more than we would have, had she not been in a train wreck at birth and so compromised.

The advice I would give ALL parents is to think for yourself. The doctors are "practicing" medicine. They are troubleshooting with a flashlight fueled by the power of their huge education, experience and knowledge. You as a parent are troubleshooting with a flashlight fueled by your HUGE daily observational data of your child combined with intuition and love (doctors, like Dr. Cloherty, add love to their flashlight too).

The fact of the matter is, that the best treatments and courses of action can only be found through a collaboration of these two lights.

Ellie went to school today after receiving her full breakfast without one burp. She looks pale and has dark circles under her eyes. She is very thin. I sent her in with all kinds of bulked up food with gracious amounts of organic real maple syrup as well as green food supplements. Dr. Cloherty, who is the best pediatrician anyone could ever have, said, "Let her go to school and take off the kid gloves with feeding her. She needs to live her life." He's right. If she has to be so restricted in her activities - it's more data and more cause for tests and exploration. But until then we need to get back to our normal.

***Image description: Ellie at her 7th birthday party opening gifts with Mama. This is a Tinker Bell toy that says a great many phrases and lights up as a lantern. Ellie's favorite is when Tinker Bell says, "Hi little Tinker!" Very perky indeed.