Read Between the Lines

Today has not been a good day. 

We had pulmonology clinic first thing this morning.  Shelbie had such a great night, pain has been manageable and things looked good from a surgery standpoint so we decided we would go home right after clinic.

But here we sit...still in Utah. 

The Pulmonologist, Respiratory therapist and PA were not comfortable with Shelbie's lung function and blood pressure which has been really low.   After they all met, they came to the odd conclusion that Shelbie had blood clots in her lungs.  I questioned that thought process.  The lung function has been lousy since she failed the PFT tests last week so it is not a new onset at all.   She's been struggling to get air for months and months, it's just that now we know exactly how bad it is.  Blood clots in the lungs would be painful and she is not in pain when she breathes.  I brought this up but I was discounted. 

In fact, I said, "Doesn't it just make sense that the growing granulomas, AVM's and other scar tissue has caught up to her and that is causing the problem?"

"Why don't we not jump to conclusions?"  They responded. 

So, obviously, I just let it go but I'm still puzzled why stating the obvious, is jumping to conclusions but making the assumption she has blood clots is not?  I was a bit bugged but then became really irritated when they added that it's either blood clots or heart failure!!  Talk about the high jump to conclusions.  I could possibly be sold on the idea that her heart is next to go, but still, her heart rate is within normal ranges so that doesn't seem likely.  It could be that the hole in her heart is getting bigger or creating problems but...I don't know.

Anyways, they rushed around trying to get her in for a CT Scan of her lungs to rule out blood clots. They couldn't use the scans we've been collecting already up to this point because they needed to use special contrast.  Tomorrow morning, she will have some cardiac testing, echocardiograms etc.  and in two weeks, we start formal cardiac work up.

The radiology tech was so cryptic for the CT Scan.  She said, "Okay, you are going to need to read between the lines.  If I come back in and say, 'Just wait for a minute', then that means the Radiologist found something life threatening and we won't let you go.  If I come in and say, 'Have a good day.' then it means you can go."   (they let her go)


This day just won't end. 

To top it off, her incision is angry, inflamed and she is covered in raised welts and hives...exactly like last time that put her in the hospital for two weeks.  I called the surgeon's office but he was in a long surgery so instead of waiting, I went to the pharmacy and bought every kind of histamine blocker I could find.  So, she's on Ranitidine, Claritin, Benedryl and Hydrocortisone cream.  It just keeps spreading.  The nurse finally called me back and we just need to keep doing what I'm doing.

It's been so disheartening to deal with all of these unexpected issues.  I suppose we are dealing with things better tonight.  Maybe a good sleep will help.  If I can't get these welts to stop spreading, then we won't be able to come home anytime soon, so I'm really hoping things turn around tonight. 

I guess I shouldn't be surprised.  We know her lungs are not in good shape, it's just facing the reality that isn't fun.  We'll be fine.  We need to find our center again and wait and see what happens and that is what we will do, instead of jumping to conclusions and reading between the lines.


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