Warning: this is kinda long so grab something to snack on.

Yeah this is Troy. Haven’t posted in a long time and just wanted to give my two cents about our family, the situation, and my hopes and fears.

Here is the timeline from today.

9:08 Arrive at front door already 8 minutes late.
9:38 Registration is completed
9:48 Checked in @ XRAY and now waiting
9:52 convict in handcuffs is escorted by officer to the same XRAY waiting room
10:24 Called back for XRAY
10:49 Confirm neurogenic bladder… ugh
11:20 Screw is removed… yeah!
11:47 Out of their with screw removed and hallway conference with Joe done

A couple special things to note. One of the obvious is the convict. Is the only place for convicts to get XRAYs the university hospital where several children are also being seen that day? Just strikes me as odd and hopefully the new hospital will have children facilities seperate.

The next is that for the entire time we waited I walked Kyleigh up and down the hallway. That is 65 steps one way in 30 seconds. If you are a mathematician you would note that I walked 2.25 miles while I waited. Yeah for exercise.

I will say once we were being taken care of the care itself was up to snuff. I never felt that even though the procedure they were doing wasn’t textbook that we were in danger. Screw removal via hemastats in the stoma isn’t really documented I don’t think.

After learning about our current bladder issue something really pissed me off. Not being well informed of whatever it is that Dr. Pittman saw when he looked at the XRAY. We literally saw the man for 5 minutes after waiting for nearly two hours in the waiting room for him. It was definitely top five worse doctor visits we have had so far (that list to be released later). As a new parent to a sick child with multiple congenital defects we were newbs to the problems and questions we should have had. From our stay in the NICU they informed us we had spinobifida tethered cord and they printed us off general info on it. To this day, we still don’t know what version of tethering Ky has.

For now we keep playing firefighter. We only fight the biggest fires until they are just smoldering and on to the next. No stopping. There is always a new fire to fight. The thing that gets me thru every day is knowing that there is an end. That Kyleigh’s problems aren’t permanent issues requiring permanent care. With this bladder I hope that this cathing is only temporary. That our untethering and cathing will retrain the bladder to work.

Some people think what we as parents are going thru must be tough. And yeah it is. Right now just thinking of the struggle is bringing tears to my eyes (and that is rare), but I can’t think about that. None of that is as tough if any of Ky’s issues become permanent for life. The thought of Ky having to cath herself long after I am dead is my worst fear.

Whew… maybe I had a lot stored up.

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