blessed with support

  First, I'd like to personally thank all my friends and family that came out to support us last Saturday night.  I was overwhelmed with emotion by how many people attended, donated items, money or time to our 4th Annual Have a Heart Event.  I am not going to lie, planning from Lucy's hospital room wasn't the easiest.  However, over the last three months it has offered a distraction that has gotten me through some of the tough days.  Two weeks prior to the event, we buckled down to get everything ready (which is why there was a lack of blog posts).  If you weren't able to attend, here's a couple things we talked about:

Most of you know the idea of LJ's Healing Hearts started from a fundraiser held for our family, but little know exactly what we did with the money raised that first year before creating the nonprofit organization.  Each year we have used a some of the money raised to cover costs associated with Lucy's care.  These costs include:
 - tolerex formula (it runs up to $450 a case, which covers about 1 month)
 - Early intervention family fee (yes, the service is not free and your fee is based on income)
 - medical bills (Lucy's pre fontan catherization in February cost roughly $2800 after insurance)

It will also cover insurance premiums this year (to keep Lucy's coverage) while I am on unpaid leave.

I am so thankful because it has allowed our family to do things that we might not have been able to, like move to a house where Lucy has her own room or upgrade our car to make room for Connor.  Through LJ's Healing Hearts we want to afford other families this opportunity as well.  However, many families have told us they are managing the financial impact of CHD.  We hope to expand our reach by working with social workers from local hospitals that have heart centers, this includes Advocate Children's Hospital and Ann and Robert H Lurie Children's Hospital.

Now back to Lucy!  After her effusion and being back on all IV diuretics, we needed to reassess.
An echo and EKG were ordered to check her heart function, still good.  The one thing that has held strong through all of this, thanking GOD!  Next we reviewed her medications and decided to replace lasix with oral bumex.  We also added metolazone.  Last we moved her IV diuril to oral.  By Tuesday night (8/22/17) we were back on all oral meds, albeit very strong diuretics.  The team felt she would need at least a week on all oral medications before a discharge date was even considered.  Over the course of the week we made no other changes.  On Friday she finished her course of the antibiotic augmentin.  It's used to treat pneumonia, or in Lucy's case, aspiration pneumonia.  This can develop after you aspirate food, liquid or vomit into your lungs.  With her vocal cord weakness, this is something than can happen easily.  It doesn't help that her stomach is not in prime working order either, because she has been throwing up at least once a day.

This week, we stopped metolazone and watched each day to see if fluid or pneumonia showed on an x-ray.  On Wednesday it looked hazy again and my heart sank.  We would either have to go back on the third diuretic and wait for her x-ray to be clear or limit her foods a little more to stop her aspiration.  Luckily, for the first time in 99 days, yup that number is correct, it was a fluke.  Thursday morning her x-ray looked much better.  For the first time, we feel like we are in a good place physically.  And there is a light at the end of the tunnel that is home.

Now onto the best part of the last week.  Lucy's personality has emerged and it has been blessing to see, even better that it's happened in this environment.  Lucy has a catchphrase at home.  It's "I have an idea".  Usually the conversation goes like this:
    L:  "Oh, I have an idea" while holding her index finger up in the air, with a smirk
   Me:  "What is it?"
    L:  "I don't know"

It's been quite a while since we've heard that phrase and seen animation in her voice and gestures.  As she get stronger and stronger, she gets closer to the girl we brought to the hospital in May.  With her limited diet, we've had to be pretty creative with her menu.  She has been asking for ice cream (not allowed because it's a liquid), so the other day I got frozen fat free cool whip and put it in a cone.  She was so excited, I thought she night jump off her bed.

We also were able to bring Connor up to visit again and they were able to play on the floor together.
They even showed each some love with a kiss.

I can say the first thing I will do when we get home is plop her into a bath.  Her hair is covered in tolerex, blood and probably a hundred other things.  I mean how else does she wake up with hair looking this crazy

We are asking that you pray for Lucy's health to stay the course and that home is on the horizon.