Never Forgotten

Before I update about Eden, I have to share an experience.

All I can say is that yesterday was a very difficult day for me, not just with Eden but other things.  I was trying to draw water from a well that was completely dry.  I just felt physically, emotionally and spiritually exhausted.  Our health insurance has a $1.5 million dollar per person lifetime payout.  For you and me, that is more than we will ever use.  However, Eden is fast approaching her limit and at that point, what do I do?  I have not received much help from the social workers at the hospital so I have been researching our options myself.  Since Eden has Down syndrome, she qualifies for Arizona Long Term Care Services (ALTCS), which will cover all of her medical expenses for life.  The catch is that they do not cover acute care situations, which is exactly Eden's case.  ALTCS will take effect the day she is discharged, but what do we do from the time our insurance runs out and she comes home?  If my calculations are correct, she will reach her lifetime payout by the middle of July.  People keep telling me to apply for AHCCCS, health insurance for the low-income.  The catch again is that to qualify, your income has to be below the poverty level.  We are blessed that Marcus makes a good income, but who on earth can afford $350,000.00 per month in medical bills?  Our only hope is that they will factor down our income with our medical bills so Eden can qualify.  Needless to say, I was overwhelmed and by evening I had a horrible headache.  The doorbell rang just before I put the girls to bed and when I answered it, it was a friend from church who handed me a card and said "just thinking of you."  I immediately opened the card to find beautiful uplifting words along with some cash.  The card said that with gas prices and going to the hospital so often, they thought it might help.  WOW!!!!  That was one of the most powerful examples of the Lord's love for us that I have ever seen.  I was so touched that it brought me to tears and I instantly said a little prayer to thank my Heavenly Father for loving me and letting me know that He has not left us alone.  I am also so grateful that this sweet family listened to and acted on a feeling/prompting to serve us.

We are one week post-op and Eden has done well.  She is still off of the epinephrine and holding her blood pressures okay, except for when they mess with her.  She is very feisty and does not like being bothered AT ALL!  She voices her protests by letting her stats become unstable for a moment or two and then she settles down and all is well again.  I think it's her way of throwing tantrums, which I guess she is entitled to at this point.  She is also off of the pace maker and her heart is pacing itself nicely.  Dr. Pearl took her to the OR this morning to close her sternum so she is recovering right now.  It can be stressful for them when the pressure of having it closed hits.  Like I said before, it's like putting on a tight pair of jeans for the first time, uncomfortable but you eventually get used to it.  Eden's sternum is closed, but now her skin is still open because she needs the plastic surgeon to insert more muscle flaps.  As you might recall, she had to have pectoral muscle flaps placed over her sternum after her sternal infection.  The infection caused part of the sternum and rib bones to be very weak and almost non-existent so her plastic surgeon is going to place muscle flaps over her entire sternum to hold the bone in place.  The bone will eventually grow back, it will just take time.  I don't kid myself anymore, I know that Eden is not going to have a nice, smooth scar, it is going to be rather uneven and gnarly.  I really don't mind though because it is all part of her journey and what makes her so special to me.  I will update all about how the plastic surgery goes tomorrow.  Our big hope and prayer right now, among other things, is that once she is closed she can avoid any and all infections and just work on getting better.  She deserves a smooth go around this time.