August 17: Day +46

The good and the bad...

Well, yesterday was definitely an up day, and well, today... not so much.

We had an echocardiogram done to look at Bella's heart after the new Renal docs yesterday thought they heard a heart murmur.

The echo was done, but it was not a great image since Bella was really fidgety during the procedure.

The results showed that Bella has what is called a "Left Ventricle Outflow Tract Obstruction," or LVOT obstruction, for short. Basically, it is some sort of blockage that is preventing her from pushing the required amount of fluid out of her heart out to her body. The good news? This accounts for the soft blood pressures and her inability to get off norepinephrine. I can't speculate on the bad news yet as we don't really know what we are dealing with yet. We need a better picture.

Thursday morning we have a heart MRI and a chest CT scheduled. The heart MRI is extremely specialized, and there is literally only one guy here who can do it and he's at another hospital tomorrow. Hey, at least he's not at the lake for the next week and a half, right? (Given that it's August, that could have been a real possibility!) After the test, it takes several days to process the pictures, and given the impending weekend, we probably won't know anything more till next week.

Needless to say, this one hurts.

Another major organ "nicked" by transplant it seems.

Again, it is a good thing this kid was so healthy at the beginning of this journey. Her regular evening nurse was shocked when she came in tonight after not having Bella for a few days. Bella was doing so much better just a week ago. Tonight, they are having trouble even getting a blood pressure on her and had to actually do a doppler reading on her arm to get a blood pressure. They are giving her more fluid and a second antibiotic as a precaution, and just trying to get her stable through the night.

And so it is with BMT. Never a straightaway to anywhere.

On a positive note, Ali got to see Bella open her eyes tonight. That was a sweet moment.

We are sad, concerned, and once again reminded of the powerlessness of it all. Each new setback is a humbling kick in the teeth to remind me that only God has all the answers. The longer I am on the case, the more I learn. What do I learn? I learn a little about a lot. Now I am boning up on cardiopulmonary physiology and pathology to not feel completely lost in following Bella's care. The problem with that is who can ever know it all? The docs don't even know it all. Only God does. As a "recovering know-it-all and control freak," I frequently have to remind myself of my own limitations, and when I forget, God is quick to gently remind me.

I have to remember the serenity prayer in moments like this.

God, grant me the serenity

to accept the things I cannot change

the courage to change the things I can

and the wisdom to know the difference.

I may have shared this before, but there is a wonderful peace I feel in the moments after I take off in a passenger jet to fly somewhere. During takeoff, I say a prayer of thanks to God for my life and my family and if this be the moment I die, I go happily and complete. By doing this, I turn over my life and will completely to God for the flight. Why? Because my life is completely out of my hands while that plane is off the ground! I smile when I land, because I realize I get another day after all, and the rest of that day feels dream-like. It really is great, and I need to translate that into this setting. As I go to bed, there really is nothing I can do to keep Bella alive or make her get better. It really is totally out of my hands. Tonight, I turn over Bella's life unto the care of God so that we may get the rest we need to stay healthy and strong for her day in and day out. It has been 44 days in the PICU after all, and we need to maintain this vigil over her for quite a while longer I suspect. I am grateful I can surrender this control, and collapse into bed without anxiety. The sadness remains, but that's okay. It's a normal, natural response to a situation like this. No need to try to medicate it or distract it. I can fall asleep sad. I can't fall asleep anxious.

Forgive me for rambling a little here, but it is a catharsis and this is the medium I use to work my way around the daily struggles to end somewhere centered, somewhere grounded. Thank you for your patience in following me around the circle to see the other side. Sometimes it takes many steps to get there, sometimes only a few. Thanks for being there each step of the way. God bless you, and good night.