Sunday, July 19, 2009

Perhaps not *quite* so bad

After review from Mom, we agreed that my earlier post from yesterday afternoon was somewhat too pessimistic. We edited the online version, but the original one went out by email. This one will hopefully be more accurate!

The situation is not quite as bad as I initially made it out to be. Yes, Loki's kidney is probably partially blocked, but that is not confirmed. And while surgery is likely, it is not definite.

Today is mainly a day of waiting and observation. The problem is that Loki may have two things wrong: reflux causing an irritated esophagus causing him to not eat enough, and a partially blocked kidney. The evidence of each can interfere with that of the other, making a diagnosis difficult. Thus, today the goal is to get him hydrated back to normal with an IV so that tomorrow's MAG3 scan of his kidney looks only at kidney problems, without dehydration getting in the way. The drawback of the hydration-by-IV is that it can even further decrease his appetite. And his left hand is bundled in bandages and an arm board, frustrating him when he tries to play with toys!

In fact, most of Loki's symptoms could be explained by the esophagus and lack of eating: Less but more concentrated urine, and high levels of creatinine and potassium in the blood. However, his enlarged kidney remains the mystery. (Update 4:15 PM: His creatinine level is 3.6, down from the earlier high of 4.6 and closer to his level a couple months ago of 3. This implies less problems with the kidney.)

Loki's mood is clearly more down today. This may have been partially caused by Mom's absence: Last night was there first night apart since Loki first came home from the hospital in February. I was unable to get him to smile, but when Mom arrived, he has pure happiness.

Loki is also eating very very little today. And unlike yesterday, he does not like the liquid Similar formula and prefers beast feeding.

In some ways, this is a more labor-intensive time than in the past. Even compared to April's surgery, Loki is busier, with his hands, toys, etc. He needs almost constant attention at the hospital.

The upside of this is that Mom was able to have the fullest night's sleep that she's had since September. She had a beer, and then slept for 7 + 1/2 hours.

Our friend Christine came to the hospital today with super food, and stayed for a few hours. Much appreciated!

We'll be here several days. We'll try to alternate evenings. I should go to work tomorrow.


Unknown said...

Thanks for the update. UCSF will figure this out. Sounds complicated to sort through all the issues. Just having staff there to observe and monitor will give more information. I"m SO happy Mom got some sleep. Sounds like Dad didn't!

thinking of you all,

Unknown said...

Thanks for the update. We are thinking about you!

marieke said...

Thanx dad, for this update, how was your night in the hospital? Well, Loki sounds like a real mommies boy. Not very surprising with connected allways!
I can imagine Loki needs more attention, he is bigger, needs to play and move around, oh boy...
A big hug from the netherlands X tante marieke

berkeleygal77 said...

Is there any way for Loki to get pre-pumped (frozen or otherwise) breast milk instead of formula? Not the same as breastfeeding, but maybe tastier to him? Sending happy thoughts your way!

Kyra said...

big hug


circe said...

Lieve jullie daar!
We waren paar daagjes weg. Schrikken van de berichten. Veel sterkte en alle goeds! Liefs, Richard, Circe en kinders.

Dad said...

berkeleygal77: He went through a phase of preferring the Similac. That lasted 24 hours.

Tante Marieke: Yes, a momma's boy!

Richard en Maaike said...

This sounds a bit better than yesterday. Hope things will turn out right. How nice that Loki was simling when mom came in, that must give her a good feeling. The bonding (hechting) is very good. But it must be frustrating for you dad, not to be able to get that little trickster to smile. Your days will come to! I'm sure. When Loki is four years old, you will be the best dad, the strongest, smartest etc. Hold on!!
X Maaike

Dad said...

Maaike: Oh, I can get him to smile and laugh. But not by simply walking in a room, like Mom can. It is not frustrating - she's earned it!

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.
Read & hear about his middle name.
See photos.
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