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.

waiting, waiting

I was waiting and waiting to write this because I really wanted to be able to say we were moving to floor two!  But alas, we hit another bump in the road.  A small bump, but one that is keeping us in the ICU.

Last week, we finally were able to come off nitric Wednesday morning and the team immediately scheduled the swallow study for the same day.  We had two full extra days of practicing with purees, so I was really hopeful.  Lucy got a dose of versed and we wheeled her, bed and all, down to radiology.  For the swallow study, the x-ray table is placed vertically with a high chair next to it.  We have a plate of food, that consists of thin liquid, nectar, puree and solid.  All have a dye that shows up in the x-ray.  We offer each to Lucy and watch as she swallows.  She was not a happy camper through most of it, but Jen (our speech therapist) assured us she did great.  She passed on solid food, but failed on thin liquids and nectar.  So what does that mean?  It means that Lucy is able to have any solid or puree foods she wants, but cannot drink at all.  Panic, right?  Not Lucy.  She has not asked for a drink since she has been able to eat solid foods.  We are still on a restricted fat diet, so our options are somewhat limited.  But Lucy has been happy with egg whites and fat free cheese, pasta with marinara, all the broccoli and beans she can eat and some fat free turkey.  This weekend we did a calorie count and she was up to about 250 calories a day.  I will keep having to remind myself that eating takes almost all of her energy and it will take time for her to be able to consume all her needs orally.

The rest of the week we looked to make more small adjustments to her treatments and medications.  We have been off all IV medications for over a week.  We slowly started to ween some of her diuretics, anxiety medications and are still getting the dosing right on her coumadin.  With the addition of food, we needed to increase her dose.  It looked like we were in a good spot over the weekend and even got outside both days.  After coming off the high flow cannula, there was anticipation of a possible move to the floor mid week.  Unfortunately, a small plural effusion showed up on the x-ray Monday.  We decided our best course of action was a dose of IV diuril.  Today, the effusion appeared bigger and two more doses were ordered.  The CPT vest treatments that were stopped over the weekend were also added back twice a day.  With rounds over in a matter of thirty minutes, reality that we would probably ride out the rest of the week in the ICU set in.  We need to clear this plural effusion and then get on a home regimen that will keep the fluid away.

I said it a few weeks ago, how this stay was eerily similar to our first.  I did not realize how right I was:
2014 - 2 surgeries, 2 codes, multiple intubations, Laryngoscopy, 84 days in the ICU
2016 - 3 surgeries, 2 codes, multiple intubations, laryngoscopy, and tomorrow marks 84 days in the ICU

As we work to get the fluid off, I will continue to try to make Lucy laugh and remember that as hard as this is, for our family to be split, it is not permanent.
I went for a walk tonight, as I passed a church, 1 Peter 5:7 scrolled across moving message board.
'Cast all your anxiety on him because he cares for you'.  So I am going to try to do that!

Her personality is slowly starting to show through!  Oh how I missed it.

even a small milestone, is a milestone

Two weeks ago, Dr. Nater had been contemplating a laryngoscopy, but we really felt that Lucy, from a mental standpoint could not handle it.  The conversation continued and last Tuesday evening we ended up going ahead with the ENT evaluation because we needed to get a good look at her throat and vocal cords.  We wanted our speech therapist there to be able to give some insight.  Again, with her anxiety sky high, we gave her a healthy dose of versed and then the team kicked us out of the room.  Surprisingly, Lucy did fantastic with the laryngoscopy.  This procedure is where a thin flexible viewing tube is passed through the nose and guided to the vocal cords.  They were able to get a good look at her vocal cords and there was no additional damage from intubation.  On the fly, they decided to offer her some pureed fruits and she accepted.  We were able to see that she was not aspirating on thicker foods.  A big success and even better that they were able to do it all at the bedside.

We got the okay to offer pureed foods:  a total of five teaspoons, three times a day.  That equals about three medicine cups of food a day.  The funniest thing happened though, after the laryngoscopy, I thought she would be put off by foods for another couple days, if not more.  The very next morning I get to her room and she looks at me and asks for water and animal crackers.  I was able to steer her back to puree fruits, but another huge win.  I actually thought we wouldn't need a swallow study after that, but unfortunately, in order for her to consume thin liquids we have to again make sure she is not aspirating.  In order to do that, we need to be off nitric.  It was our plan to start weening on Friday to hopefully be off for a full day and do the swallow study Monday morning.  We started the day at 10 parts and got as low as five, but Lucy kept having these spells where she would dip her saturations into the fifties.  The worst part is that she was showing no signs of distress, no retractions, no increased respiratory rate.  It is really scary to think about being at home for that to happen.  You aren't hooked up to monitors at home, so you really rely on those signs to tell you something is wrong.  Needless to say, she did this all weekend and by Monday morning we were still on 10 parts of nitric.

Here's the crazy part, when you're doing good and improving it's really easy to lose sight of the progress you make.  The little things don't seem so important.  If I think back, coming off the breathing tube (twice), decreasing chest tube drainage over the course of week, pulling chest tubes and coming off all IV medications seemed like giant milestones.  As I stood in rounds Monday morning to discuss the plans for the day, I started to cry.  The first thing I said, "I'm so frustrated because I don't feel like we made no progress over the last week",  Yet in two paragraphs, I have summed up a week of milestones.  How easily I forgot that eating, just eating, is such a big milestone for Lucy.

Through the rest of the week into the weekend, Lucy continued to ask for food (none of which she can have), graham crackers, avocado, ice cream, and sour cream with onion strings.  Luckily, almost every time I can offer her pears or apples and she accepts.

Monday plans were to ween slowly.  Instead of dropping 2-3 parts every four hours, we dropped by 1 every six hours.  The hope is by tomorrow she will be off nitric and we can do a swallow study on Thursday.  The only other thing keeping us in the ICU is her oxygen.  We have bounced around from four to twenty liters based on her saturation levels.  Today, they also decided to give her blood.  What they hope is that this blood will bridge the gap and give her some extra red blood cells to carry oxygen to the body.  Since we are continually doing labs for electrolytes and coagulation, we are removing blood faster than she can create red blood cells to carry oxygen.  After the blood was given, her saturations took a nice jump to the 80's.  We'll see if that has a lasting impact and we can bring her oxygen down.

I would also like to give a shout out to all the friends and family that have helped with Connor over that last couple weeks.  As most of you know, he has stayed with my parents full time since Memorial day (holy cow, how long ago was Memorial day).  We clearly did not anticipate being in the hospital this long, so when it came time for them to move so many stepped up and helped to care for him so Mike and I could continue to focus on Lucy.  It is quite a relief to know he is in great hands!

We continue to be blessed by all that have supported us.  Thank you.

For those that like to have specific prayers, here they are:
For Lucy to pass her swallow study and be able to eat and drink to her desire (albeit fat free).
For her saturations to remain above 75
For us to be moved to the floor ASAP

I'll leave you with this cute interaction.  This past week, I brought up Lambie, one of Lucy's bedtime buddies.  She was so sweet when I showed her giving him hugs and then they colored together.