Gwyneth Larson's Journal
Written Feb 13, 2014 9:04pmGood News!!
I spoke to our insurance company and as long as Gwynn receives the medication inpatient, which the infusion clinic in the Oncology clinic is considered then the 20% copay does not apply after we have hit out max out of pocket..Which we hit easily by April every year!
I spoke to her doctor tonight and we will be starting it in conjunction with her next scheduled treatment. It will be a long infusion, probably a full day affair. Sounds like some people feel kind of icky during and right after the infusion but it usually doesn't last much longer than that day. I am praying that adding the IVIG will be the answer! This poor kid has been through so much and I can't wait to have her feeling better!
The next battle
Written Feb 4, 2014 11:34pmGwynn 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!!!!
Being the Duck
Written Jan 16, 2014 2:11pmSo when I am training servers in at our restaurant one of the first things I tell them is how to be the duck. I know it sounds silly but it is a great analogy for a server. Serving as those of you who have done it know, is a very difficult job. I tell you this from experience not only because I have been a server but because I have had many other jobs. I was a linguist in the army(Persian Farsi), I was a sales rep, a customer service rep, a Registered Nurse, a restaurant owner, and various other titles and I can tell you that being a server is one of the most challenging things I have ever done. So when I am training new servers I often tell them this analogy. The duck appears to glide effortlessly upon the surface of the lake, but under the water it's little legs are paddling vigorously to keep it afloat. This analogy is not only true in the restaurant where you have to juggle so many things at once it may seem impossible but it also fits for the constant roller coaster Gwynn and our family are on. What a ride this roller coaster of life has given us. I am sorry it has been so long since I updated but things change so quickly that just when I think I should post we are pulled a new direction and I wait to see what will happen.
Gwynn is doing well, well being a relative term. She is currently admitted at Children's because she has RSV, A virus that in most adults and older children is nothing more than a cold, but unfortunately for babies and those with weakened immune systems can be very serious. The good news is that after a few days of large does of IV steroid, and continuous nebulizer treatments she is stable enough to most likely go home today. She will hopefully be breathing well by next week and feeling better.
That being said we have not been able to get control of her Churg Strauss since October and can't seem to keep her healthy for longer than a week. As of a couple days ago her stomach hurts so bad when she eats that she isn't able to finish her whole meal. Something she hasn't experienced since before the Orencia became our miracle drug. Her lungs have also worsened over the last few months and she gets winded going up the stairs. She has sharp shooting pains throughout her body and is tired a great deal of the time.She has frequent viral illnesses and never seems to be feeling freat. It is a very frustrating thing. We have tried shortening the times before treatments and that did nothing to improve her condition, we at one point were giving her treatments every week but it isn't working and the increased risk of infection isn't worth it if she isn't showing improvement. We have discussed adding another medication or maybe going back to steroids however these steroids have had such a terrible impact on her body that the idea of it scares her and me and most of her physicians. We are stuck in a pattern of just trying to get by day to day, having her at school as often as we can and hoping that it will pass and the Orencia will work again. She is going to four hour days (all the main classes) Math, Science, Language Arts, and Social but it is a challenge with all her appts, treatments, illnesses to keep her there with any regularity. We are giving it our best shot because she really wants to be at school with her friends.
Of course the restaurant has been undergoing big changes too, we moved Fat Matt's into the cafe and are preparing to remodel the dining room amongst other exciting challenges and I am still working one day a week as an RN as well. Aiden is wrestling and took second place at his last tournament, Brooke and Gwynn are dancing, Gwynn is involved with two church groups and Aiden is also getting involved. We just keep trying to juggle it all, my house is a disaster, I feel like we live in constant chaos hoping that this will be the year we get it all under control. Until then we will just keep being the duck:)