The Clot.....

 Babygirl's infant fistula (the connection surgically created to join an artery to a vein in order to enable safe, consistent dialysis access) was placed 3/31/22 (Fistulas and Other Fun Things....). Because of her (very young for this kinda thing!) age, it was placed in a very small artery/vein pair in her left wrist.  We were told it needed to heal for 6 weeks, and be successfully used for dialysis for 2 weeks before they could safely remove the large catheter that has been hanging out of her chest since early January. 

They have been attempting to use the fistula for a couple of weeks now. 

The first time, they were only able to get one of the two necessary needles into it, using the catheter as the second access.  This resulted in a fairly sizeable hematoma (a blood clot OUTSIDE of the blood vessels - a huge bruise-in-the-making) that made it hard enough for me to feel the thrill (vibration) of the fistula that I sent her to the ER to make sure it hadn't clotted off INSIDE the blood vessels. It had not.

A fistula of this type is a connection between a high-pressure artery and a low-pressure vein.  The arterial pressure expands and toughen the vein so it can tolerate the repetitive punctures needed for dialysis. Clotting this off can risk both the arterial flow (cutting off circulation to the hand) and the venous drainage (causing the hand to swell).  On both sides, chunks of clot can break off, traveling either down to the hand or up into the lungs. Really big clots that travel to the lungs can kill. 

Yesterday's attempt to use the fistula for dialysis resulted in clot INSIDE the vessels.  This. Is. Alarming.  Babygirl sent me a text at work: "Call me when you can."  

Now, this kid NEVER asks for anything, ever, so I pay attention when it happens.  I called between patients, and she told me she was being sent from dialysis to her vascular surgery hospital for emergency surgery for the blood clot. There was a well-hidden shadow of fear in her voice. 

The dialysis center was letting her go by cab, not sending her in an ambulance, which was reassuring.

Well. I had 3 patients lined up in rooms already, one of them brand new.  I had to do a fast internal assessment: Am I okay to be seeing patients right now? I've been cancelling days left and right to juggle Babygirl's and Curlygirl's appointments, and balancing THAT against my (really amazing, honestly) ability to compartmentalize my stresses, I opted to see the patients who had already arrived and cancel everybody else.  I told Babygirl I'd meet her at the hospital. The relief in her voice was, well, difficult to compartmentalize.

I packed up my work computer (there's ALWAYS waiting. Always) and a couple of cans of seltzer and arrived at the hospital at noon.  Babygirl got there an hour ahead of me.  Practical as always, she had the cab take her home so she could let the dogs out, and took a Lyft to the hospital.

And then we waited together. We chatted. We looked at TikToks. I finished my charts for the day and took care of medication refills and messages.  And we waited. The surgeon stopped by.  Anesthesia came in for the usual check.  At about that moment Babygirl's stomach rebelled because she had missed a dose of her nausea medication, and she began retching and dry-heaving the entire time the poor guy was there.  "Um, we can't sedate her if she is like this.  It has to be general anesthesia to protect her airway." Well, okay. They threw a motion-sickness patch behind her ear (the one thing nobody has done for the nausea so far.)

At about 4:30 a slot opened up for her to go to the OR. A good friend brought me lunch/dinner. Babygirl was gone for about 3 hours, 2.5 in the OR, and half an hour in recovery.

The clot was cleared.  There was a piece that broke off and went to her hand, but the surgeon dissolved/removed that. He did his level best to not have any significant blood loss, since she has none to spare. He did angioplasty (used a balloon to stretch the vessels open wider, getting them safely to 5 mm (that is less than1/4 inch).  

The surgeon was, like last time, pretty ducking impressed with himself, like a little boy who has succeeded in climbing to the top of the tree for the first time in his little life LOL.  I won't disagree with him.

He told me he was going to be away for the weekend, and who was covering for him while he was gone.  Turns out he was supposed to leave in the early afternoon for a long weekend away, but stayed rather than transfer Babygirl's care to another surgeon. "I'm going to go paint a barn." Um, okay, but be careful on the ladders, dude. I am almost as impressed with him as he is.

He wants to repeat a vascular assessment (AKA repeat the surgical procedure) in 2 weeks.  Apparently, once one clots up like this, you have 30% odds that it will happen again in a month or so. He wants, especially, to repeat the angioplasty to increase the diameter of the fistula to decrease that risk.

In the meantime? No fistula for dialysis, not for a minimum of an additional month. Add at least 6 more weeks to the length of time she's had an open tube hanging out of her chest wall. She can't fully shower/swim STILL during that time. 

She's home, up and moving already this morning, with no appearance of residual sedation.

Back to work.

DeeDee