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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.

9 comments:

Anonymous said...

Thanks for posting, Kathy. I had been wondering and worrying about what was going on. The vaccine decision is a tough one. I had them done, but one by one, not in groups. It took forever, but our doctor was very patient and understanding. In your case the decision would be much more agonizing. You are doing what you can with nutrition and experts. I try to use a combination of alternative and western medicine for myself, with western actually being my 'alternative,' last resort. Costs a lot of money and not always effective, so I don't know if I can recommend it, but the practitioners certainly are very careful and insightful in their diagnoses. Anyway, I'm glad that you are at least somewhat out of the woods for now. Laura

Anonymous said...

How on earth are you working, Kathryn, with all this going on? Just found your blog and got up to speed . . . Laura

admin said...

FWIW I think you did the right thing with the vaccine. I got my little guy with the g-tube the non-live version as well for similar reasons (our pediatrician's practice only received twenty doses but had a conference and reviewed charts; apparently the group consensus what that H1N1 "would very likely kill him" and WOW...hearing that changes your views now doesn't it?) and they are not given to sensationalism either so we followed the recommendation. It *is* a lot to consider, especially with kids who have other stuff going on. Glad to hear you're all home again and that the MRI at least didn't show enlargement. Here's hoping Ellie just had a yucky virus or something and this will go away...

Pey said...

Love you guys xx

Katy said...

I was thinking of you today and yesterday as we consider the dreaded Botox. The lesser of two evils indeed. that dreaded H1N1--I'm jsut not sure what to think about that one.

Kathryn said...

Hi Katy- the Botox one was very hard too. Make sure they use some sort of serious pain killer!!! We used Versed - I wrote about it under the Botox tagged posts or something similar. It made Ellie forget the whole thing. It's awful- these huge needles deep into the muscles.

It helped I think but now we are just going to try the serial casting because Ellie has a systemic response to the botox last time that scared us very much - so not more botox. I am not advising you either way. It's hard though and I feel for you having such choices laid out before you. All of medicine is the lesser of evils.

Shannon said...

So glad you guys are home. So sorry that there are not detailed, reliable instructions for your sweet girl. I am with you on the lesser of two evils. Seems that we have made many decisions over the years with these words looming over our heads. We did the H1N1 with Ben. Until we got the call that Ben was red flagged we had no intentions of seeking it. We got it based on "what what if we don't?"
I have been thinking about you guys and this rough fall and hope that you all get a much deserved break.

Elizabeth said...

I'm glad to hear that things have improved. It sounds like you have some wise counsel, and I so admire you for making these difficult decisions. I know what you mean when you have to choose between two evils. I always thought that was so absurd, so f'd up, really -- when we had to choose between two drugs, etc. -- I guess having a healthy sense of humor and above all, sense of the absurd saves you...it does me for sure.

Laura Gilmour said...

I love reading your blog and watching Ellie grow. Ellie has so much potential with the right resources. It is children like her that make me know I'm making the right decision to plan my future career in educatioanl psychology/special education research.