Tuesday, July 21, 2009

Hospital Day 5: A 24-hour delay

Almost everyone agrees that Loki will need an NG (i.e. through the nose) feeding tube. But the final decision waits on two things. First is confirmation from the urology team that Loki does not have an acute (sudden) kidney problem. But the urologists will not do that until the MAG3 scan is done. The scan was scheduled for today, but when we arrived, the radiologist noticed that Loki's IV--which is needed to inject the radioactive solution--was over 48 hours old and leaking. She was unable to find someone skilled in putting in a new IV. The scan has been rescheduled for tomorrow afternoon.

Second, the doctors want to see if Loki eats better once taken off the IV fluids. These fluids can suppress thirst, and thus cause him to not feel like taking the bottle or breast. Mom and I are confident that little will change, but Loki must go 24 hours without IV fluid, which began a couple hours ago.

Thus, tomorrow afternoon we should know more.

Mom was able to get a good night's sleep at Margaret's, and I head home tonight.

6 comments:

Unknown said...

Wow--here I am again, posting first. I really only check the blog once a day...anyhow, isn't it amazing how easy it is for the docs to be "patient" and "wait and see" while you struggle with worry, anxiety, and a totally cessation of your regular life? I think UCSF is great, but their 24 hours and YOUR 24 hours are probably vastly different realities. Hang in there, guys. And if you think he needs that tube, at least for awhile, PUSH. Use your credentials, my early interventionist friend...and you know your little boy SO well! Because what you all have been enduring for months over eating stress just cannot continue without real cost to your sanity...don't you think? Even a one month fatten up the boy regime could do wonders...
Sending love and good thoughts.
Cheryl
Cheryl

AdventuresInHousing said...

I agree with Cheryl. Use your EI credentials, or have Jesse use his "I'm a dad and I know my son" credentials if need be - you know your son best.

marieke said...

Jee, dit is nervbreaking(for me it is). Again 24 hours of waiting. How is Loki doing except for waiting and disabled because of his arm all wraped up?
Hold on dear people!! Big hug, Marieke x

Kyra said...

Hang in there guys! I cannot repeat what Cheryl said, but cannot think of new words either. (maybe you should post first more often??;-)) Soon Loki will be able to play freely again, even though it seems like forever. Each 24 hours pass...

Love,

Kyra

Frits said...

I think this is what you call the waiting game, but this game is noet funny. We're with you gays every second of the 24 hours.
Love and take care, Frits and although Heleen is not here, bur shopping with Mariek, I'm sure also on behalf of her) Heleen.

Richard en Maaike said...

Jeetje, wat een geklungel zeg. Ik hoop dat het voor jullie allemaal goed voelt. Het is jammer als een sonde nodig is, maar aan de andere kant haalt het wel even veel stress en gedoe weg, zodat je rustig aan weer opnieuw kan beginnen. Het een sluit het ander niet uit!
Succes met de scan morgen.
X Maaike

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.

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