It’s been about a month since our last update. When last we left you, Codeigh Mae was in the hospital for a “tune up” to her dialysis as we attempted to manage her ever changing sodium levels.

Her and Dad spent close to two weeks at the children’s hospital making changes to various medications and when we came home, Codeigh Mae’s hospital schedule was changed to twice a week – once for Albumin and bloodwork and once to get a shot to increase her red blood cell count, which seemed to keep dropping – a common complication of Congenital Nephrotic Syndrome and the secondary conditions it causes, such as blood clots and low iron.

We notice during this time home that Codeigh Mae doesn’t have the same energy levels, she’s puffy and she’s peeing less – even on Albumin days, when we’re used to getting very full wet diapers. After multiple instances of very high blood pressure, it was decided to send her back to the children’s hospital.

She’s now been there for a week and we’re not 100% sure what the going home plan looks like. She even spent her 3rd birthday in the hospital!

Codeigh Mae is really throwing these doctors for a loop. They’ve noticed her bloodwork will be dramatically different based on what time of day it’s taken at or whether it comes from her arm or her port. As soon as they get control of one set of numbers (for example, her sodium), other numbers will go crazy (like her potassium). Her blood pressure has also been hard to manage and on multiple occasions she has had what is called a hypertensive crisis, in which the blood pressure reaches dangerous levels. Her hemoglobin (or red blood cell count) has also been incredibly low – nearing transfusion territory, which we need to avoid for transplant reasons.

Yesterday, Dad met with the surgeon to discuss and get consent for a double nephrectomy. The actual term is Radical Bilateral Nephrectomy – radical meaning the whole kidney (not just a part of it) and bilateral meaning both kidneys.

Yes, you can live with no kidneys!

Essentially, her kidneys, which still function even though she’s on dialysis, are releasing a hormone that tells her blood vessels to constrict – which causes her blood pressure to rise. Remove the kidneys, remove the hormone and cascades that cause funkiness in her other numbers and you almost remove the problem. The dialysis becomes her kidneys entirely and we don’t have to worry about what the actual kidneys are doing and what role they place in the process.

While the surgeon feels comfortable doing the surgery while her hemoglobin is low, the team has ultimately decided to try to boost the hemoglobin as much as we can prior to surgery – which will hopefully negate the need for a transfusion during.

They expect at least another month before we go for the nephrectomy (hence why the title of this update includes May) and are optimistic that Dad and Codeigh Mae will get to come home before we’re admitted again for another undetermined amount of time.

So that’s what we know so far! Be sure to follow Caring for Codeigh Mae on Facebook for more regular updates as they happen:
http://facebook.com/codeigh.mae