Sunday, June 4, 2023

Still Searching...

Fevers are back.

High oxygen needs are back.

He's been awake off and on today, so that's good, or at least okay. 

But we don't know what's driving this!

We've increased his Ventavis (inhaled iloprost - a pulmonary hypertensive med) from every six hours at home, to every four hours and now every three.  We tried to reduce his rescue Clonidine for the neurostorming and his temp shot up, so that's on board again. We've now stopped his feedings again. 

Nothing is coming back positive, and his bloodwork looks okay, too.

And yet, he was just switched from his home vent on high O2 and sick settings to the hospital Servo (you know, the ventilator that has a brain).  And we're doing inhaled Nitric Oxide (iNO).

I just don't know...  

He's not in pain.

He's being cared for.

I was able to go to church and take the sacrament today.

In testimony meeting, one sweet mom spoke of being here now for three months with her daughter who's fighting cancer.  She spent significant time in the PICU and then moved to the cancer floor.  On the day she was supposed to go home, she returned to the PICU instead.  And she spoke of being so tired, of being unable to go on. Her family is split up between the hospital, home and three on missions. I've been there, I've felt that.  

But then she pointed out that our Savior also reached the point where He felt He couldn't go on and pled for relief, if possible.  But if not, then He would finish.  And He did.  And because He did, we will also go on. Our sins can be forgiven. We can live again. We will have our precious children, our family, back together.  

And while I'm not as tired as she is, I am tired. No answers is hard. No good plan for recovery is hard. But I am reminded that there is One who has been here before, that He is always with me, and with Aaron. He does know the answers and the Plan and what will happen. I need to remember, to trust, to be still and let Him guide. 

Because He really is the only one who can. 

All the art of living lies in a fine mingling of letting go and holding on.
Havelock Ellis



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