It has been an emotionally draining and challenging week in regards to Jenelle. It has also been a week where so much has happened, its difficult to know where to begin to update. However, if I postpone this update any longer - who knows what I will miss!
First of all and most importantly - Jenelle is fine. In the past two weeks we've seen fewer seizures than ever. She seems to be in less pain from her UTI, and we are half-way through the course of medication. Yesterday was a long, difficult day in dealing with our insurance. As I was putting her to bed last night, I leaned over the crib and put my hand to her cheek and got the biggest smile in return (smiles are as rare as laughs these days) Then after she smiled, she gave me some giggles. It was as if she knew her poor old Mom was emotionally spent, and she was trying to give me a little ray of hope to help me fight on. She is amazing.
On Monday, Dr. Shields presented Jenelle's case (including the new issue with her UTI) to the team at UCLA. It appears that the blood work Jenelle had done on March 7 indicated that her bi-carb level was still too low, even though we have reduced the drug (Topamax) that UCLA believes is causing this problem. I found out the next day that her bi-carb level was a 14, even lower than the previous level. Before re-scheduling our date to start the diet, UCLA wants Jenelle seen by a Nepherologist (Kidney Doctor). They are very concerned that Jenelle has something called Renal Tubular Acidosis which could eventually lead to kidney stones and/or kidney failure. If Jenelle's acidosis is caused by her drugs, then she will be OK to do the diet. If it is "metabolic" in nature (and thus pre-existing) she will not be able to go onto the diet.
Part of the agony of this week has been dealing with insurance and Jenelle's medical group. UCLA wants Jenelle to urgently see a kidney doctor at UCLA (they are holding an appointment for next Thursday if we can get authorization - maybe sooner.) The problem is that HMOs do not want to authorize an urgent request for a doctor outside their contracting medical group. After a couple of days figuring out who and how to request the authorization (apparently Jenelle's medical group only considers phoned in requests as urgent, not faxed ones - who knew!) we got word last night that we she is approved to see a kidney doctor at CHOC. I called last night for an urgent appointment, but apparently "the doctor" wants to review her medical records first so he can determine for himself whether or not her situation is urgent. UCLA is upset because they know their kidney doctor has experience working with kids that are on the Ketogenic Diet, and feel they may not be able to communicate easily with a doctor at CHOC than they have with their own kidney doctor. That is understandable, but unfortunately with our HMO I don't think it can be done. I'd pay out of pocket, but they are talking ultra sounds and other tests - we just can't afford it. All that said, I don't believe we'll be getting a new date for the diet anytime soon. UCLA would like us to start as soon as possible after we get these kidney questions answered. I appreciate them being so through - I feel we are in the right place.
Brett's favorite saying is "surrounded by morons, we press onward!" This couldn't be a more accurate desription about dealing with our insurance. Jenelle's doctors have been wonderful in doing all that they can to help the process. I wish the insurance process could be so much easier.
During the time it took to type this, another issue has come up. Jenelle is refusing her bottles and has not had a "wet" diaper since yesterday morning. Refusing her bottle is most likely the acidosis as it will cause you to lose your appetite. The lack of "wet" diapers could indicate dehydration. If after her afternoon nap she is still dry, our Peditrician's office has instructed us to take her to emergency (they are closed on Thursday afternoons.)
I will keep you all posted. Thank you for your continued prayers.
Oh yes, and Happy St. Patrick's Day from the Curran Family. Lets hope the luck of the Irish can help us pull through some miracles!