Thursday, January 22, 2009

Incomplete answers

Although the specialist doctors met today, they will not make any decisions until a larger meeting Friday. For now, the summary is this: Before too long, Loki will need a pyeloplasty, the reconstructive surgery that I mentioned previously. The remaining questions are (1) whether to perform another surgery for a temporary solution that will allow the pyeloplasty to be delayed, and (2) when to do the surgery/surgeries.

You may recall that the urinary output of Loki’s kidney (the ureter) is blocked at the ureteropelvic junction. The urologist (specialist of the urinary tract) does not think it is an obstruction exactly, but that part of the ureter – which is a tube-shaped muscle that pushes urine down – is not working. In a pyeloplasty, the bad part is removed and the remainder is reconnected to the kidney. He was not at all worried about the surgery directly; he is confident of its success. The concerns revolve around the impact of deep anesthetics on Loki’s weak lungs, as he’ll need to be out for 2 to 3 hours. Even once the surgery is done, a different catheter (drainage tube) will be inserted, and not removed until the doctors are 100% sure that everything is working. We could take him home with this catheter still in place, if he has recovered in all other ways.

An option is to perform a cutaneous pyelostomy in order to allow more time for Loki to strengthen before the major surgery. Compared to the pyeloplasty, this is not as invasive or intense. This sounds like a stronger version of his current nephrostomy tube. With a cutaneous pyelostomy, the ureter is sent to the skin, and urine will just drain out of Loki’s side without a tube. Strange! But whatever works…

Regardless, these will likely be done in San Francisco.

5 comments:

Anonymous said...

I have a client with a nephrostomy and it drains out near his belly button - somehow it works, and mom reports very few problems. Wish you all the best of luck and health whichever operation happens. -Jennifer M.

Anonymous said...

Nog steeds onzeker dus. Ik hoop dat jullie vrijdag meer antwoorden krijgen.
X Maaike

Anonymous said...

Huh/tsja...

Kyra

marieke said...

I also believe I am slowly becoming a medical professor.... Ok, so friday decision day? In which option are your feelings the best?
Good luck! Big hug

Mascha said...

Oh, dear. This is a tough one. Probably both solutions have their pros and cons. But Loki's lungs are indeed a major concern.
If you want me to put you in touch with parents who had to make similar decisions, please let me know.

Big hugs and much love, as always.

About Loki Sky

Loki Sky is a special little man. He was a very early micropreemie, weighing only 610 grams (1 lb, 5 oz) after 24 weeks, 3 days gestation, born to an American Father and a Dutch Mother in Berkeley, California on October 18, 2008.

On January 11, 2009, while still in the hospital NICU, his one kidney stopped working. It was repaired after three surgeries. After spending time in three hospitals in three cities, Loki came home on February 17. He struggled with eating, and then stopped in July, leading to 8 days in the hospital, a failure-to-thrive diagnosis, and a NG feeding tube. On October 10, a minor surgery installed a G feeding tube. Another procedure replaced it with a new one, and then again with a Mic-Key button in Jan. 2010.

In August 2010, he and his parents moved to the Netherlands.

Read about his first name.
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