Sacrifice

Having a child with a chronic illness can mean a lot of sacrifice.
You sacrifice family time
You sacrifice your marriage
You sacrifice your friendships
You sacrifice your job
You sacrifice fun
You sacrifice vacation
You sacrifice your home
You sacrifice comfort

When you look at that long list of sacrifices it's hard not to be angry and ask 'why us?'  From diagnosis at 20 some weeks gestation to now, I have asked that a lot, why us?  But rarely do I find myself truly angry at our circumstances.  Yes, it stinks to live in hospital and sacrifice but I am not in control.  My strength and patience are due to that alone.....I AM NOT IN CONTROL.  Someone far greater than me is in control.  As we venture into a different kind of hospital stay I think I will be truly tested with both.  The majority of our other stays have started with a surgery and moved onto recovery where small steps are made to getting healthy enough to go home.  Our last two weeks have been getting Lucy in the healthiest state and then we wait and wait some more and wait some more.
Hearing that patients in need of a heart transplant typically wait six to eight months.  That would put us right around Christmas.  Oye.

When we were in route to Lurie's, I was scared out of my mind, the quick turn of events didn't leave a lot of time for processing all that was happening.  In that ambulance ride the only thing I could think to do was message a heart mom who had been down this road and ask for words of wisdom.
Among them she said:
 "Remain present both with your circumstances and in prayer.  Like really, never stop praying."

How true!  If you just focus on the day in front of you, the overwhelming feeling to not know anything of the future fades.  To be able to focus on just the present day, you need prayer, A LOT of prayer, because your mind can so easily wonder down dark paths.

The last week has been more talking. In case you were wondering, I missed a few specialties that have been by to speak with us:
Palliative care
Hepatology (liver)
Pulmonology
Nephrology (kidney)
Infectious Disease
Chaplin

So much talking!  We have been making small changes to get Lucy to her healthiest state.  We are down to two liters of oxygen and we've weaned a medication (bosentan - pulmonary hypertension medication).  Lucy's demeanor has gotten better each day since we arrived,  Her smiles are back, her giggles are back, her sassiness is back.  This is mostly due to the milrinone (in short, it's a medication that helps with the pumping of the heart) and in part that she has been left alone.  I honestly think this is the best she has felt since last May.  She has been a riot, just chit chatting the day away!  Aside from living in the hospital, I have enjoyed seeing her personality re-emerge.

While making these changes, the team has been back and forth about doing another catherization, weighing the risks and benefits.   With her in a stable state, the team felt another catherization to coil some collateral vessels would be helpful.  We were looking to schedule next week, but of course, the week is full.  So today it is and in true fashion, it's not a definite if we will end up actually going.  We are 4th case, which means roughly 2 pm.  We will be NPO (no food or drink) starting at 2 am.  If we are lucky, one case gets cancelled and we are able to go sooner.  If we are unlucky, one or more cases will take long and they will cancel us after not eating and drinking for most of the day.
We hope that this will improve her health even more and we can work to strengthen her muscles, but another procedure, even a catherization is scary.  I always talk to Lucy about what is happening, so last night, I told we were going to have another procedure and that she couldn't eat or drink before and.  She immediately burst into tears and asked who was going with her.  I told her I would be there,

Bless her heart!  This journey is much harder now that Lucy has a better understanding of everything.

Specific prayers that this catherization does not set us back, that any intervention helps and that both her and I are alive after not being able to drink or eat all day!  Yes, I try not to eat and drink while she is unable.