Friday, November 2, day 40

Emma got rid of the ventilator yesterday!  She has been doing very well on the PD.  They even started talking about moving her to the floor soon.  Of course, I immediately took to counting the number of days that it could be before we can go home.  AND I got to hold her for the first time in 14 days!  It was long overdue! 

I finally came to grips with the fact that we will probably not be going home any time soon, even though I am still ever hopeful.  We are officially in an apartment as of yesterday.  It will be nice to have a little more room, and when we have visitors come in to town, they will have a place to stay if they want it.  I am sure that mom’s cooking has nothing to do with my excitement about an apartment! Wink, wink. 

It seems that all of my wishful thinking and plans for going home may have been premature.  This morning Emma started having some trouble breathing again.  She had a second blood transfusion yesterday and did not handle the extra fluid well.  She has swollen back up.  The PD is still working, Praise the LORD,  it is just not as efficient as the CVVH.  The added fluid put pressure on her lungs, making it extremely hard for her to breathe.  She was re-intubated this morning to allow her to breathe easier and not work so hard.  At this point, intubation is a very good thing.  It keeps her from burning and wasting precious calories on breathing.  I was actually quite relieved with this change.  Emma was working so hard and was clearly uncomfortable.  The PD has been tweaked a little in hopes that the changes can help pull more fluid off in the short term.  Also,  eventually they will give her more albumin and put her back on feeds, maybe tomorrow. 

The total body swelling has also increased the fluid around Emma’s heart. It has gone from ‘moderate’ to ‘large’ and now it is even bigger than ‘large.’ Apparently they don’t really use extra large as a measurement tool.  So, it is larger than large?!  So far, this hasn’t been creating any problems for the actual functionality of her heart.  If it starts to create problems, then they will drain it.  Hopefully the drain won’t be necessary and her body will get rid of the fluid all by itself.  Fingers crossed!

So far, so good.  This is a little setback, but it is not huge and hopefully will not impact our going home date.. .. the random date I have carefully calculated to be our going home day!  It is definitely a moving target as we have had to push it back quite a bit! 

Recently, I have been clinging to the aforementioned “random date that has been carefully calculated to be our going home day.”  I have found this to be a valuable tool in clinging to some form of sanity.  The fact that we will hopefully be going home, and going home sooner rather than months later is obviously not a given.  Yesterday and today I have realized that I have been putting a good bit of my hope in and on this day.  These are the words that keep coming to my mind: 

My Hope is build on nothing less    

Than Jesus’ blood and righteousness.

I dare not trust the sweetest frame,

But wholly trust in Jesus’ Name.

 On Christ the solid Rock I stand,

All other ground is sinking sand;

All other ground is sinking sand.

What a blessing, comfort and wonderful reminder the words of this hymn have been to me in the last couple of days.  As our circumstances change daily, the random date, I have put so much hope in, becomes sinking sand as it is constantly shifting.  Thank you Lord for giving us hope.