Zoe's skull surgery has been moved from the 13th to the 9th of October. Not much of a jump up, but it will do. In light of the fact that I woke up with a wicked cold yesterday (no, my name is not Job, really)--having the surgery date be that far out allows time for Zoe to recover should she catch my cold. Thank goodness for small blessings.
Prior to the surgery we will be having two mornings worth of meetings on the 6th and the 8th to meet with the surgeons, anesthesiologist and the social worker.
Flipping through the little booklet they sent about our time in the ICU, among all the logistical information (like no flowers allowed in the ICU) was a paragraph that caught my eye--and made both of them well up:
"Share with the nurses special things about your child; what he or she likes to do, favorite friends and animals, or anything that will help us to see your child as the person he or she is when well."
Wow. For an institution to understand the power of positive visualization--makes me feel pretty good about Zoe getting treated there.
Dr. Cunningham called us yesterday with some more updates.
He had a long conversation with Dr. Key from the osteoclast group at MUSC. I had asked Cunningham to ask Dr. Key where the best place for Zoe to get a BMT for osteopetrosis is--and Key's response was that there were only two places he would recommend: Seattle and Minnesota. He went on further to say that while Minnesota (I'm not certain where--Mayo Clinic?) has done more of them, that it was in no way an indicator that they would be more successful should we go there. His opinion was that our already living in Seattle should have us doing the procedure here. As it will be a looooong haul, our comfort in being at home during all of it should be a big deciding factor.
Key said that he absolutely agreed that we should take care of the skull pressure first. Key also told Cunningham that Jeff and I are absolutely welcome to call him and talk to him ourselves.
Cunningham is still working with the results of the blood test. While the lab is not willing to say that the change they are seeing in one of the genes is responsible for the osteopetrosis, Cunningham's own expertise in molecular testing has him saying that it is. He says that the good news with this is that her form "tends to be transplant responsive."
Jeff and I need to undergo genetic testing ourselves to see if we each carry one of the two mutating genes, or if one of us is the carrier for both. It would be too heavy of a thing to bring in another baby with such a life threatening disorder.
And, I've just got to say this--dears, check your insurance policies. A bone marrow transplant costs $600,000. Our Regence plan puts the $$ cap for a BMT at $250,000.
Apparently, this is quite common.
The financial person we sat down with at SCCA when we were there a week ago talking BMT details said that for non-Washington, Oregon, and Idaho residents, they require a deposit in the form of the difference between the insurance cap and the $600,000 prior to treatment.
Holy crap. Can you imagine? Your loved one is on the verge of dying and you must find a way to put mortgage-amount of money down before they can get treated?
If this isn't an argument for universal healthcare, I don't know what is.
In the manual they sent us entitled "Preparing For Your Transplant" there is a section on raising money--press kits, how to host an auction, and the like. Again, it is just so wrong that this is a part of our healthcare system.
My rant.
As we mentioned before, we should be okay in terms of medical bills. As the BMT will be performed at Children's, our financial aid that they are providing us should pick up the difference between what our insurance does and doesn't pay. Halleluiah. I've never been so greatful for not making a lot of money. We only now have to focus on living expenses during the time that we cannot work.
Two days ago was my birthday. That evening we got to bask in the love of our amazing community as they came together to chant --and eat cupcakes-- at the beautiful house built by Arturo and Risa.
Thanks to all who came, and to all who ohm-ed at home. Your love keeps us strong, keeps us going.
Namaste.
2 comments:
A friend of Kevin's had lukemia and hid DID have to hold an auction to pay for continuing treatment. I'm so glad you will not have to do that. (Still ommmmmming...)
I am so grateful the $$ piece is resolved for you. I remember the "finance" office well... it was de-humanizing. This week our country became "socialist" under the republicans, as our govt bails out all the financial institutions....ensuring that basic health care and education systems (the underpinnings of any society that would like to become or remain "advanced") can be sustainable for all should be next on the list. (Ommming for Zen family..and for Obama,too!)
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