It has been a long week. Poor Liz has gone through two more clean outs and it has been frustrating to try to manage her care as both her GI and Pediatrician are on vacation. The on call doctors never want to make a serious decision, rather, they manage things via the nurse and give just enough guidance. The new drug still has not been approved by our insurance company which makes me SO angry! They have asked to review her GI doc's chart notes, proving that this last resort option is needed. I could vomit thinking of how we put her through the horrible clean outs and don't have the medication to start. These insurance companies don't care at all about the patient and I have no doubt that they would be happy if Liz's body just gave up and they didn't have to worry about her claims anymore. The fact that my baby suffers while we wait for their "mercy" is sickening.
So, this week we just kept up with her heavy dose Miralax and managed her nausea with continuous Zofran. I have felt stuck for sure, but I am glad things didn't escalate to the point of needing to admit while her GI has been out of town.
Her doctors both come back this week and we'll see what happens.
Already planned, she will get labs done this week. It has been 4 1/2 weeks since her last set of counts which is the longest we've gone in months. This happened because we cancelled a Hem/Onc visit here in Long Beach due to waiting for CHLA Hem/Onc's notes. Counts are done at every Hem/Onc visit with a simple finger prick rather than drawing blood, so we'd just planned on getting counts then. When that didn't happen, her Pediatrician and I agreed to wait because we don't want to draw blood anymore than we have to given Liz's anemia. This break means that we have been living in a blissful state of ignorance. For all I know, her white count is still super low and she's neutropenic, but not knowing gives me two options- 1. Keep her home and in a bubble. or 2. Act like she's not immune suppressed at all and let her out and about without any safety net (mask in crowds, avoid movie theaters, malls, church...). I have opted for #2 this week and I've just let her go. I even let her play dodgeball with her youth group at church on Friday. Who knows if her platelets are low....bring on 8th grade boys pegging her with balls over and over as she dove on the gym floor : )
Elizabeth is scheduled to go to Fashion Camp this week! VERY exciting. My sister saw this camp highlighted on the morning news and it is perfect for our little fashionista. Megan wrote the camp director and explained Liz's situation, and they generously offered a discount and said they will be happy to have her. So, she'll go Monday-Friday form 9-12. Liz is pretty nervous because she doesn't want to have to wear a diaper and doesn't want to get sick there, but she is also excited. We are going to make this work!! If you are praying, please pray that she is feeling well and can enjoy this awesome experience.
Our prayer requests this week are-
* For Liz to be able to enjoy camp.
* For her counts to look better than they did after her last labs. White count and ANC to be higher, meaning that she is not extra susceptible to infection right now. It would also be great for her Prealbumin and iron counts to look better.
* She's lost some weight, so for her to gain some back this week.
* We need the drug approval, so we are praying for the insurance company to come through. We are already a week behind when she should have started the drug.
* Avoid admitting to do NG clean out before starting drug.
I have many pictures to post from our awesome vacation and the girls' birthday, and I hope to get to those soon. In the meantime, here is a photo of our happy girl, at the beach with Harper.
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| One of the things I love about Liz is the way she has learned from an early age to accept her body. It hasn't been easy as by nature, she is a little diva when it comes to her appearance. BUT, look at her in that two-piece. Her tummy has thirteen scars, including one that runs from sternum to belly button, and she doesn't care. Go on, girl! |
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| Harper and Lulu. What a fun couple hours we had in the sand while Kate had her beach volleyball workout. |
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