perspective

Monday I was having a pity party.  I am sick of the hospital, so is Lucy.  I am tired of Lucy being sick.  Let's be honest, she hasn't been healthy since last May.  Yes, we have good days, but overall Lucy just doesn't feel good which leads to a lot of crying.  This hospital stay, my patience are at an all time low.  I find myself getting annoyed when Lucy is extra 'needy' or is struggling to get comfortable enough to fall asleep.  Then I hate myself for it because she can't help it.  How can a four year cope with everything that's happened in the last year and here I am annoyed?

Then yesterday, from a distance, I watched two parents make a decision to say goodbye to their child.  Siblings and extended family came to comfort and say final goodbyes.  And then they left without their child.  Leaving a void that will never be filled.  My heart ached for them.  My mind easily went to "what if that was us?"

Man, does a day like yesterday change your perspective.  Lucy is alive and although she is not healthy, she is not nearly as sick as she has been.  And I thank God that she is here to annoy me and remind me that when my patience are short, I need to lean on him.

I probably should have foreseen this hospital stay.  About two weeks ago I was checking her saturations and she was resting in the mid sixties.  I immediately called Dr. Husayni's office and after sending a video of her breathing we all agreed that bumping her up to four liters for some extra support was fine.  At her appointment that same week, she showed no signs of distress and she was actually a little silly during our visit.  Then Friday Connor woke up with pink eye and a cough.  Within a day Lucy had all the symptoms too.

Last Tuesday afternoon I noticed Lucy's respiratory rate had increased and that night we were up most of the night coughing.  By Wednesday the cough had gotten even worse and she started retracting.  We spoke with Dr. Husayni again and he did not want to wait until our Thursday appointment, so we made the trip to the ER.  In the ER we drew a blood for a virus panel and electrolytes then tested for the flu.  We headed up to the PSHU that evening on high flow oxygen at 10 liters to watch.  Even on 10 liters during coughing fits she would drop her saturations to the low sixties.  Over the weekend we bounced around on flow, down to three then back up to fifteen and anywhere in between.  They put her on a stronger antibiotic to cover  aspiration and anything that may show up.  However, all tests came back negative.  The likelihood was that it was a virus that did not show up on the panel and we would just have to let it run it's course.

One thing the team was worried about was the injection had worn off and Lucy was again aspirating.
Dr. Sherman stopped up yesterday evening to scope her and look at her vocal cords.  Thankfully what he saw was good news.  She is still getting very good closure.  So we do not have to restrict oral intake!!!!!!  This confirmed that we are probably dealing with a virus.

This morning we moved off high flow to a regular nasal cannula.  We will need 24 hours with no episodes and then we can talk discharge.  While we are inpatient though we decided to go ahead with gastric emptying study to see her stomach motility.   This should give us an idea of what is going on with her stomach and help us to determine if something can be done about the throwing up.



She hasn't been super upbeat while we have been here and that's understandable, but SpongeBob SquarePants made a visit to the unit and we got the biggest smile.






Music therapy and a mustache party have helped a bit, but we really can't wait to get home!

Chaos

If I could describe what life has been like since G tube surgery, it would be chaos.  I am a creature of routine and when I don't have one, it feels like I am spinning.  It's hard to focus on anything.  Each day, hour, minute, it seems there's a list of things to do, but nothing ever gets done.  And it's probably why I have started this post a dozen of times.

Prior to g tube surgery, we had gotten into a nice routine.  Lucy medication and feeding schedule was set, both kids were for the most part sleeping through the night.  I had adjusted my work hours to accommodate Lucy and it allowed me to go to the gym a couple days a week.  Oh how I forgot how therapeutic running was for me.  But after surgery, everything seemed to turn upside down.

During Lucy's recovery over the summer from her Fontan, I had been asked multiple times if this was her last scheduled surgery.  My answer has always been the same:  'Yes, it's the last planned surgery'.
I say that because CHD is unpredictable and for the majority of people with congenital heart defects a transplant will eventually be necessary.  Transplant.  It's hard to describe my feelings when I hear that word.  Prior to the Fontan, it seemed like a distant conversation.  However, during Lucy's December 22nd appointment, I sat in Dr. Husayni's office looking at her awful x-ray and he said it.  We need to start thinking about transplant evaluation.  You think you can prepare yourself.....because transplant is not an 'if' it's a 'when'.  But you're never ready....cue the tears.

Why are we talking about it now?  Most of it stems from diuretics.  We have tried to ween her from the massive amounts of diuretics and have been unsuccessful twice.  We have to start thinking into the future and what it will mean if Lucy cannot handle the Fontan physiology without diuretics.  A transplant evaluation is one of the first steps.  Luckily, her team felt that there were a couple other issues that are impacting the Fontan.  The first and biggest is her aspiration and lung issues.  In simple terms:

-aspiration causes aspiration pneumonia
-pneumonia increases her lung pressures
-high lung pressure creates venous congestion
 *venous blood flow is deoxygenated blood coming back to the lungs.
-Venous congestion means the fluid looks for other places to move

This can mean fluid leaking through the lymphatic system, creating more pressure on the lungs or higher use of the fenestration, which means lower oxygen saturation (and in turn lower profusion to organs).

The second issue is her gut.  Since surgery in May she has been getting less than optimal nutrition.  We all know good nutrition fuels healing.  We were hopeful the g tube would assist in reducing the vomiting, but it's still a once a day thing.

At the beginning of January, her medical team (cardiologist, surgeons, intensivists, APN's, ENT) gathered to discuss Lucy and where we could go from here.  What I wrote above was a majority of what they discussed (but probably with more sophisticated words!).  What came out of it was a plan to eliminate the issues impacting the Fontan using minimally invasive procedures.  As you know, the first procedure was a second injection using a more permanent material.  As with the first injection, we don't know how long it will last (anywhere from 1 month to a year).  We can continue to do injections, but it is not a long term solution, so we are also looking into vocal cord regeneration.

Our second procedure will be a gastric emptying test (not scheduled yet).  This will allow us to see how her stomach is functioning.  Feeding is where I feel most of the chaos comes from.  Since December 6th (our discharge from surgery) we have been adjusting her feeds constantly.  I was so focused on getting her all of her nutritional needs that at first I didn't realize it might be better to only give her what she can keep down.  Add to that some restriction from drinking (at first) and trying to keep her liquid volume around 33 ounces.  I did everything. 6 feeds over an hour, small feeds every 3 hours, half her food via tube and the rest by mouth.  It was almost all consuming.  And the constant waiting for her to vomit, also polarizing.  While we are still vomiting, we have a routine that seems to suit Lucy's need to drink, while getting a majority of her calories.

She gets three ounces of milk/pediasure (alternating) every hour.  She gets tube fed to give her potassium.  The dose is rather high and can upset the stomach, so we give it slowly over 45 minutes.
If she doesn't drink all her allotted liquids, we make up the differences with overnight feeds at one ounce an hour.  It seems that after two months of trial and error we are starting to hit our stride again.
Just in time for Lucy's 4th birthday!

I think my biggest fear is the knowledge that the injection will wear off.  When that happens, will she silently start aspirating again and will we need to go back up on her medications.  There is a possibility her vocal cord never heals and I'm not sure where that would leave us.  It's been three weeks since the injection and we have been able to ween the diuretics a good amount.

So right now, we focus on the good and pray for the following:
~healing for her vocal cords
~increase in appetite so she can eat more calories
~that her body can continue to handle less diuretics