Today was Haydens first appointment with her infectious disease dr since her last surgery...i think everytime i go in there, i go in thinking "maybe today we will leave here with good news"
..today i was disappointed once again. Haydens id doctor is just the sweetest women and i absolutely love her..she's the kind of women i would have coffee with you know?:)She always gives me plenty of time to ask questions.We talked allot and i told her about Matt having surgery and being off work,and she was so sorry about that and seemed very concerned about how we would pay for Haydens treatment...then she checked Haydens neck and what the surgeon thought may have been scar tissue, Dr Lacroix today said she's pretty sure its yet another lymph node flairing up.:(The good thing is ,its not growing as fast,which is good because Dr Abrams(surgeon) would prefer to wait at least 3 months before performing another surgery on Hayden.Dr Lacroix(id doctor)said today though that Dr Abrams really doesnt want to do another surgery if at all possible,since theres another nerve around that spot again.We then discussed the treatment plan Hayden is on(antibiotics)...back after Haydens first surgery ,in june,they had prescribed her an antibiotic called rifibutin, Its for infections but it expensive(like $400.00)when we went to our pharmacy(where weve been going since all this started back in april)the pharmacist knew we were "self pay"(were on a sharing plan,we pay up front and then get reimbursed a few months later)and she told us about how exspensive this stuff is,she asked if we would be ok with her checking with the dr to see if she can give her rifamptin instead(its a "cousin" to rifibutin)and its also MUCH cheaper($80.00)When we picked up the stuff she told us that's what they ended up doing,so since june Hayden has been on rifamptin(along with other antibiotics)2 weeks ago i got a call from the ID doctors office saying the rifamptin ,according to labs is not helping so they are switching her to something else.Today when Dr Lacroix seen this she wasn't pleased,the meds they switched her to,from what i understood have side effects with younger children and one of them is messing with there eyes.She asked if Hayden knows her colors yet,which i replied no and she said,well if shes going to continue on this med they switched her to ,shes going to need to start going to another dr regularly just to make sure this med isn't messing with her eyes,which will be hard to tell since she don't know her colors and that's how they test it.I asked her what she wants me to do and she said"go back to rifibutin(the $400.00 antibiotic)She said we know that she is susceptible to that and she felt that would be the most helpful if any.so we decided to do so.Bless her heart,she came back in with a coupon($364. instead of $400) for the stuff cause she felt so bad .A few other questions i asked...
"Have you seen cases like this before..where it just goes on and on?" She answered,"yes,and i hate to tell you this but often with this,we will deal with it,have surgeries,do treatment and 2-3 years later,it comes back again."
I then asked her is she thinks that this treatment will help..She said with a confused look "im 50/50" . I cant help but think things like "it hasn't helped in the past and that bump has grown since shes been on it..." but i know my God...Hes a God of miracles. And if He chooses to heal her i will rejoice and if He chooses to allow us to continue walking this difficult road...i will still praise Him.
Tomorrow i have to go pick up the pricey antibiotics,but first i want to call our sharing plan and see if they cant work something out,given that Matt is not working and we have no income,where they could reimburse us quicker then a few months.Im praying they will agree.If not,i have learned God will make a way. He proves himself faithful every time.
Matt is going a little over a week now since surgery.Hes feeling good,Asher only asks him about ten times a day,"how are you feeling now dad?" ,i think he thinks ,if hes good then they can go play:/.He will be in a sling for 6 weeks and while hes in that,he really cant do anything with that arm,once hes out of the sling he will be able to do more,but still not lift any weight.
We had a pretty good week,it had its ups and downs...ok it had allot of ups and downs..theres so much involved in all of this...so many emotions...so many battles i feel were fighting..and its wearing. On us,on me. I feel like i have so many things i need to do or get done in a day,and theres moments when he asks me for something small and i just snap,and i hate that!My prayer last week and again this week has been that Jesus would take over my body,my mouth and overpower my human-ness, i guess you could say.
This week is super busy for me...i went from being a relaxed ,not real busy stay at home mom to a really busy one.(i already miss the first)between doctor app. and therapy,im trying to get my rock candy made,i want to do some canning end of this week AND i have a bunch of things to send into CHM(our sharing plan)along with making calls to them to figure some things out...but i keep telling myself.."one day at a time"
Right around the time that we brought Hayden home from the second surgery i started a book of writing things down that people have done/given us over this time..i wish i would have started this when Hayden went to the hospital the first time back in April but just since i started this in july i already have 3 pages full.. i write the dates ,who it was,what they did or brought..and its just amazing...how many people have done so many things...and how everyones gifts come out in different ways...some have sent flowers ,some have brought meals,some have called and asked if they can pick stuff up for me(that would be my amazing neighbor who has done SOOO much for us over the past few months)and on sunday someone even left a freezer meal in our car,not saying who it was from but just that they wanted to bless us,that was so neat! I wanted to write this stuff down,to rememeber what others did for us,how it blessed us,but also for ideas of things to do for others when they go through hard things.
I want to leave you with something,i actualy just readin my devotions...wow.im sitting here,once again in amazement at how God has us right where he wants us...that's so comforting to me...
"Anticipate comeing face to face with impossibilities:situations totally beyonw your ability to handle.This awareness of your inadequacy is not somehitng you should try to evade. It is precisely where i want you.the best place to encounter Me in My Glory and Power.When you see armies of problems marching towards you,cry out to me!Allow me to fight for you.Watch me work on your behalf as you rest in the shadow of My Almighty Presence."
Thank you Jesus!!
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