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The next battle

Gwynn did end up going home the day I updated last, she had a headache and neck ache before we left the hospital which ended up turning into what was most likely a Viral Meningitis. It was decided since her fever was only 100.1 that it was not likely to be bacterial and since their is no treatment for viral meningitis we went home to try to ride it out without putting her through a spinal tap(we had seen her pediatrician who rightfully sent us to the ER to be sure we could rule out bacterial meningitis. After 12 hours we went back home but were home for only 24 hours when Gwynn spiked a fever and developed a crazy bad ear infection, we went back to urgent care and were told she had one of the worst ear infections ever seen and that her ear drum would most likely rupture. It did and Gwynn still has trouble hearing out of it.

We saw her pulmonologist a few days later where we found out Gwynn's lung function has declined 20% since it was last tested in August. Scary stuff, at this point we are not sure what is permanent damage as a result from her vasculitis and what was because of the RSV. The fact that she was in that bad of shape after nearly a gram of IV solumedrol, round the clock nebs, pulmicort and a 3 day burst of oral steroids was concerning to her doctor. Her pulmonologist was frustrated we hadn;t started the IVIG. She rightfully mentioned that we had all these discussions last year when Gwynn was struggling.

The issue is that Gwynn does well during the summer and early fall but as soon as cold and flu season starts and she gets sick(especially in school) then it seems to trigger her vasculitis. This sends her in a endless cycle of illness and flaring vasculitis during the winter/spring. It is miserable and has caused her to be pulled out of school every year since she was diagnosed with this darn disease. She gets so many infections, both viral and bacterial and is either sick or her vasculitis is out of control because her immune system is all reved up from whatever bug it was fighting. This makes her vasculitis in her lungs worse and makes her lungs more susceptible to you guessed it another bug. It is a never ending cycle and Gwynn is so miserable. She is in constant pain. The breathing issues are scary as is the permanent damage being caused by the vasculitis that we can't see easily.

We found out tonight that all the doctors discussed it and decided to petition the insurance company for a pre-authorization to prescribe IVIG( Which is intravenous Immune globulin or IGG. or antibodies. (basically other peoples ability to resist certain infections/viruses etc. in a bag) The insurance company to the doctors surprise said yes. It is apparently an automatic denial on the first request for most insurance companies because it is so expensive. However we found out we will have to pay the 20% co pay which according to Gwynn's doctor will be 1600 to 2000 a month with no max out. Meaning we will have to pay every time she gets it. I have not spoken to the insurance company or other options since it was after business hours. Holy Moly that's alot of money. I am sure there is a solution so I am not going to fret yet but have to admit my heart sank. She said we can get started as soon as we decide to go ahead and pay that amount...wish me luck as I start my research tomorrow!
For now they have pulled Gwynn out of school again and she is doing one on one with Ms. Meyerson who has volunteered to work with Gwynn. She is awesome and we appreciate her!!!!