Monday, August 18, 2008

Pile it on

It was another beautiful 9:00 this morning; I was ready to call it a day! Work has me a tad bit stressed and I have a full schedule this week. On top of that, I realized that our new class time at The Bell Center is just not going to work out, so I have to try to get Addie in another class. One thing led to another and I didn't think my day would get any more stressful until the phone rang tonight and it was Greenvale Pediatrics. I almost didn't answer because I thought they were calling to remind me of our appointment on Wednesday. Well, by golly, I did answer and got news that just completed my day.

I can't help but feel like I'm failing the test God is administering.

Dr. Dudgeon said he was calling to give me the results of Addie's lab work that was done at the time of her MRI. He admitted that he was a slacker, but had wanted to wait to call me until he had talked to an Endocrinologist at Children's. Wow...nothing good would follow that statement. I am still trying to wrap my mind around the entire conversation, but here is the basic outline:

Addie's growth hormone level is abnormally low.
She is anemic.
Her alkaline phosphatase level is elevated - abnormal Vitamin D level?

So, as Dr. Dudgeon put it, we won a trip to the Endocrinologist. When we go to see Dr. Dudgeon on Wednesday, Addie has to have another full lab work up. So much for getting to her eighteen-month check-up that is now a month late. It just sickens me that we have to go through this again so soon after the last time.

Keep following only gets worse.

As the conversation shifts to Dr. Ness, I asked Dr. Dudgeon if he had time to review Addie's MRI and what he thought...a moment of silence followed by:

"She's a [walking] miracle, Jenn, we both know that". He went on to tell me that the MRI does not match up with Addie. (Nobody understands how great those words are to me!) This is the part that got me, he continued to talk about the MRI and how we will need to watch Addie since "they" were now saying she had Dandy-Walker Syndrome....excuse me?

*Sidebar - When the first radiologist read Addie's ultrasound of her brain (that was done not long after birth), his findings pointed to Dandy-Walker Syndrome. Dr. Dudgeon called me and gave me the news. By that evening, that report was revoked.*

Here we are nineteen-months later and another radiologist is trying to give that diagnosis. According to Dr. Dudgeon that diagnosis is also listed in the notes from Dr. Ness - which I will get on Wednesday. I told Dr. Dudgeon that they were not going to come back nineteen-months later and attach this as a secondary diagnosis. He made a few points:
1. The radiologist is just looking at a picture of a brain, not all that factors in to making a diagnosis.
2. He doesn't think Dr. Ness mentioned this because she just wants to "wait and see" what happens - what a pleasant thought.
3. Dr. Dobyns (remember - world renowned physician in Chicago) never made mention of that diagnosis. He should have had it been necessary.
4. Saving the best kick in the stomach for last - Addie's ventricular system could begin to fail. If that happens, fluid in the posterior fossa would begin to accumulate to the point that a shunt would have to be placed - hence the reasoning behind "wait and see".

I am so sick of this "wait and see" mentality. How about SOME SOLID ANSWERS! I promise you there is nothing that anyone can say to make this any better right now. I just need to vent and wanted to update everyone.

I will give more details as I get them. Wednesday will be another tough day for Addie. It is so not fair.


Anonymous said...

Jenn, I am pulling you, Chris, Julien and Addie. That baby girl of yours will continue to thrive because we continue to pray for her.