An update on the Wildcard and Faith is a Presciption for Peace

by Hope Sewell on April 19, 2011

in allergies, faith, family, kids

Whew!  We have had a very very busy weekend (which really seems to be the norm) and we’ve got another big week ahead.  I did want to pop in and give a quick update on Lilly.  After about 3 days her face finally started to go down and clear up.  Today, she still looks a little swollen and has a few spots left on her face and tummy.  Thankfully it hasn’t slowed her down much at all.  I’m still holding out hope for some good Easter pictures!!

I finally heard results from her endoscopic surgery that was done in Baton Rouge, LA in June of 2010.  She’s kind of gotten lost in the system at Children’s in Birmingham and our sweet doctor has been back home in Brazil for a family emergency.  That scope in June immediately confirmed that she has EE but she was scoped the same day we moved (yep…got up at 3:30 for surgery and drove ALL of our stuff all the way back to Dothan in the same day.  That was one long and TOUGH 20 hour day) so her EE has yet to be treated.  Which has been very frustrating for me because of the permanent damage that inflammation in the esophagus can cause.  Thankfully, I’ve been able to manage the other symptoms with her diet.  It has taken so long because our doctor in Birmingham has been trying to get the actual slides for the microscope from her esophageal biopsies without having to scope her again herself (which is quite costly but sometimes you’ve just gotta do what you gotta do)….we’ve tried and tried and tried and have FINALLY gotten the right information.  Gotta love medical administration. 

Upon looking at the slides herself our doctor has decided her plan of action will be the budesonide slurry.  This is like a steroid smoothie.  It’s a clear medicine mixed with Splenda that has an aloe-like texture.  She’ll swallow it and not eat or drink for at least 30 minutes afterward.  This gives the medicine time to coat the entire length of her esophagus.  We did this with Tobin almost 5 years ago when this was a very new form of treatment.  It worked really well with him.  Although it didn’t totally eradicate the eosinophils it did lessen them and help heal the esophagus and gave us a chance to get everything under control.  This is a specially compounded drug so we’ll be getting regular shipments from Birmingham for 3 months.  We’ll do a large dose for the first 8 weeks and then work on weaning her off of it the last 4. 

Tobin was at a completely different place when he did the slurry.  It was one of our last hopes for control.  We didn’t know what in the world we would do next if this didn’t help him.  I’ll tell more of his story in a few weeks when we participate in National Eosinophilic Awareness Week.  But I remember when we got our first drug delivery from UPS in a small Styrofoam ice chest.  It has to be kept cold so it is packed in ice.  I was reading through the receipt and this is what I read, ” Serious side effects may occur.  Please inform your doctor if you experience seizures, muscle/joint pain or cramps, severe stomach/abdominal pain, easy bruising/bleeding…” and the list of even more graphic (too yucky to list) side effects continued for another 18 lines.  Talk about nervous!!  This was a brand new drug at that time and by the way there are no FDA approved drugs to treat Eosinophilic Esophagitis currently.  This is still such a newly diagnosed disease but thankfully technology is moving quickly.  I also read another line on that receipt that I found to be very profound, “Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects.”  So the question is, do you trust your doctor??  😉  We trusted her 5 years ago because We. Were. Desperate.  And I trust her now because I’ve seen what has been done in the past.

This is so just like our relationship with God.  There are times when we look around and see all the serious side effects and we get scared.  Tobin did experience the muscle cramps and easy bruising by the way….and he still deals with muscle cramps very often.  But it’s in those fearful times of LIFE that we must remember that our Heavenly Father has “prescribed this {medication–whatever it is you’re facing} because He has judged that the benefit to you is greater than the risk” of what might happen.  Sometimes we trust Him because we’re desperate and we’ve got nothing else and other times we trust Him because we remember mighty things He has done in the past.  Technology and medicine may fail us but He is always been and always will be faithful.

So we’ll receive our package soon and finally begin treatment.  That thought puts my heart at ease.  We have a follow-up appointment in Birmingham in June and then she’ll have another endoscopic surgery in July.  We’re praying for good findings.  Until then, we have our prescription for peace in the everyday things we face….Faith in the one who is faithful.

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