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There were a lot of other doctors’ appointments that took place on Thursday and Friday . . . or didn’t take place. The vein mapping for placement of a dialysis catheter was postponed. It had been double booked with the chest CT, which obviously took precedence especially due to the concern with the liver. The vein mapping, as I explained last week, is for something we hope is way off in the future and actually something we hope never ever comes. So that one’ll just have to be rescheduled (or not).

Then on Friday, Mark took Austin to have his stitches removed. Remember how the hand surgeon had been upset with the type of stitches the ER used? Well, with good reason. He removed the three from Austin’s palm (the least sensitive and least mangled part of his hand) amidst so much screaming and squirming that we rescheduled for this Thursday so they can do it while Austin’s under sedation. They’ll just administer propophol through a gas mask and rip them out in ten minutes, saving the little guy any more unnecessary misery.

The hand is definitely healing though. When we change the dressing covering it, I’m no longer worried about infection since you can tell it’s all closed up nicely. Thanks goodness there.

And, and this is the best part of all, his Thursday labs revealed that his creatinine has lowered yet again. Still not in the normal range for a child his age, but getting mighty close.

Every time I look at him dancing about in his goofy way, playful and happy and unencumbered by disease (or — often — by clothes), I feel so thankful we have made this choice. We will never regret having these days.

Austin’s appointment this afternoon with the orthopaedic surgeon went well.  We soaked his hand in sterile water and peroxide until we could peel the bandages off and the doctor was quite pleased with how it looked. He could tell right away from the way Austin was holding his fingers that there was no nerve damage (phew) and said the skin tone looked good and pink which meant it was already reconnecting (phew again). Austin, yet again, has ended up extremely lucky in his own extremely unlucky way.

Stitches can be removed in a week, although the doctor did caution that the nylon kind used in the ER will be painful to remove.  Not awful, but at least a pinch which will certainly get tiresome when there are 42 of them. He even said he was going to call the ER to tell them not to use that type with kids anymore.

By the way, you’ve gotta click directly on the photo below to see up close the full extent of damage.

Thanks for all your comments, both here and on Facebook, which fully convey the horror and commiseration that such a story deserves. I heard from at least three separate people who said they read it out loud to a group to much gasping and groaning. We too felt horrified as we watched this all unfold and were weighed down by a deep sense of the injustice of it. Especially because it had happened on Austin’s requested outing, his special celebration, the thing he’d been awaiting for so long.

But at the same time, Mark and I were both slightly relieved (only slightly) that it was Austin forced to endure this and not Braedan. Braedan is marvelous in many ways, but tolerance for pain is not one of them. He has, however, encouraged all of us to eat (and color) with our left hands until Austin regains use of his right (coloring is easier than eating). Another grand and mature display of brotherly affection between the endless bickering.

And I agree that at least this falls within the range of “normal” little boy accidents but I also agree that we should be exempt from such things. In fact, I hereby apply for our official exemption and can write a powerful and convincing essay to the universe describing exactly why my family should no longer be subjected to such “ordinary” calamities as broken arms and bicycle accidents, and most especially not such major calamities as teenage car wrecks or middle-aged heart attacks.

Now I know (oh, do I ever) that suffering is not evenly distributed but I do indeed think we’ve had enough.

Things are going fairly well. As is so often the case in these situations, it’s the little things that are causing the most pain (literally). Austin was extremely irritated by the NG tube, which thankfully was removed this morning. His next complaint was his foley catheter, which caused my visiting brother pain to even think about. During rounds, the PICU docs agreed it could be removed but then needed approval by both the surgeons and the nephrologist (kidney doctor). So, after a few hours of calls back and forth, that too was finally removed. They are now measuring his diapers to record urine output, which has been slowly but steadily increasing. The other measures of kidney function look pretty good; one has risen but seems to be leveling off, as we’d hoped.

But now there’s something else bothering him. He’d been complaining all morning about his right eye. At first, I thought it was just gunky from being crusted shut but nothing seemed to ease his discomfort. I casually mentioned it to the PICU attending when she saw me sitting there with a warm washcloth held to his face: “His right eye seems to hurt a bit,” and she stopped what she was doing and said, “What? His eye hurts? He must have an abrasion!”

I briefly imagined them whisking him off to eye specialists for yet another procedure but quickly learned it’s not uncommon to get an abrasion during surgery. I don’t really understand why especially because they tape his eyes shut the entire time (never knew that before either; they sure don’t do that on Grey’s). Anyway, all he needs is some Bacitracin and then they’ll tape it shut while it heals. Now he’ll have an eye patch too!

He hasn’t smiled yet but I am hoping that once the eye is taken care of and he gets the popsicle he’s been given permission to eat, he’ll grant us one of those beauties. We expect to move back to our room by the end of today which is great news. We’ll all be much happier there and he’ll be thrilled with the additional stars that have appeared in his sky over the past two days.

So now we keep moving slowly forward, healing physically and emotionally. We still feel generally positive about yesterday but also have that sense (yet again) that there is no one simple answer, no single magical procedure that is going to make it all okay. For twenty-seven months now, we’ve been awaiting the day when we can say, “All better” and have it ring true. We’ve said it a few times prematurely of course. With radiation looming on the horizon and the risks that accompany it (kidney failure, secondary cancers), I wonder if we’ll ever really reach the end of this journey.

But we carry on. And right now, all we really need is a smile.

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