Bo was born on 6/3/07 with the rare congenital disorder currently known as Microvillous (Microvillus) Inclusion Disease. It took 2 hospitals and 5 weeks to diagnose. He became the 61st baby in the US to receive Omegaven. His nutrition is 100% TPN/Omegaven. We believe there will be a cure for this in our lifetime, and that a transplant is NOT the best option for this disease. This is our story.
Wednesday, April 23, 2014
Tuesday, April 22, 2014
Yessssss!
Got a text that Bo's regular shipment will have his Omegaven, as well! Expecting delivery tomorrow morning. Whew!!!!
Monday, April 21, 2014
Easter Miracle
He [Omegaven] is not here. He [It] is Risen [in transit].
After Critical Care was unceremoniously dismantled by Walgreens, Bo's medical supplies started getting substituted with cheaper versions and their pharmacy seemed unsure of some really basic concepts around TPN. So we decided to switch to an infusion company that many of our TPN friends use.
It is a company we have been in touch with for years, and one whose customers have been a reliable resource for me and my many questions. We spent the better part of 6 weeks working on our supply list and ironing out details to ensure a seamless transition. When the time came to switch, it turned out that the best laid plans were not sufficient to ensure Bo's Omegaven supply.
Holy Thursday was Bo's appointment at DMC (it went well). But we were also told that his Omegaven, while clearing customs, had not yet received FDA approval to leave the port authority. Many phone calls, emails and texts later, it was determined that the FDA manager had not yet assigned an agent to our case. Over the Easter weekend, we were getting hourly updates regarding his shipment, possible work-arounds, and building contingency plans. Today we got word that his shipment was approved and on its way to the home care company.
Once the chain of custody is with the infusion company, I can relax, knowing it will be here within a day.
After Critical Care was unceremoniously dismantled by Walgreens, Bo's medical supplies started getting substituted with cheaper versions and their pharmacy seemed unsure of some really basic concepts around TPN. So we decided to switch to an infusion company that many of our TPN friends use.
It is a company we have been in touch with for years, and one whose customers have been a reliable resource for me and my many questions. We spent the better part of 6 weeks working on our supply list and ironing out details to ensure a seamless transition. When the time came to switch, it turned out that the best laid plans were not sufficient to ensure Bo's Omegaven supply.
Holy Thursday was Bo's appointment at DMC (it went well). But we were also told that his Omegaven, while clearing customs, had not yet received FDA approval to leave the port authority. Many phone calls, emails and texts later, it was determined that the FDA manager had not yet assigned an agent to our case. Over the Easter weekend, we were getting hourly updates regarding his shipment, possible work-arounds, and building contingency plans. Today we got word that his shipment was approved and on its way to the home care company.
Once the chain of custody is with the infusion company, I can relax, knowing it will be here within a day.
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