Wednesday, July 22, 2009

Hospital Day 6: Tube in, no scan

Loki's NG feeding tube was just put in. The doctors want to keep him here a couple more days for observation.

There are advantages and disadvantages to the feeding tube. Obviously, we have been struggling with getting food into Loki, and this will make our daily battles much less. He will get the calories that he needs, and will put on weight. We will likely be able to sleep more too!

But children with feeding tubes develop issues. They don't easily learn that feeding is what relieves hunger. They can develop aversions to food and to the touching of their face. Getting the tube in is not fun, and they do come out. And the tube can irritate his esophagus, which is already a problem. In addition, imagine swallowing food with a tube in your throat. Fortunately we have an amazing occupational therapist at home who can help Loki and us making eating a positive experience.

In a week or two, Loki will have an esophagoscopy, which is the examination of his esophagus with a camera if the medicine is not working by then. The gastroenterologists want to wait until the increased dosage of drugs has fully taken effect.

Because his kidney seems OK in the short term, the MAG3 is on hold. Dr. Baskin still wants Loki to have one, but it can be done as an outpatient (no overnight stay) procedure. That delay is fine with me, as it is an unpleasant procedure: Loki will get an IV, a urinary catheter, and then is strapped down to a platform for 30 minutes.

Mom took a before and after picture of Loki's handsome face, and the diagnosis is..... still a super handsome baby! Loki is a trooper!

What we've not mentioned is how much attention we must give Loki. He generally will not lay for long on his own. And when we hold him, he insists that we stand and walk around. Getting him to sleep requires perhaps 30 minutes of bouncing. And once down, he does not sleep for long, especially if we have roommates. (We just went 24 hours without, but before that we shared with a family who was not always considerate of out situation.) We are happy to do what we must for our little man, But sometimes it is exhausting.

Christine stopped by early this morning with food. She gets a gold star for support!

3 comments:

marieke said...

Well, the tube in the end. For me it feels good little Loki-doki gets his calories now. But I also think of the next step, eating again. The kidney issue sounds less heavy right now. Give this little handsome fellow a big hug from me ok? I wish mom and dad lots of sleep to build up the energy level again. We think of you lots and lots. XX Marieke en Martin

Cheryl said...

Loki is beautiful. Do brace yourself for the people who stare. Kids would often ask about it when we were out. I learned to simply say "She gets her food a special way to help her grow", and leave it at that.

Are they doing bolus feeds only, or recommending the pump? Let me know if you need any supplies. I found it VERY easy to do bolus feeds in the car seat so we could take longer outings and not worry about no eating when distracted, etc. May make you MORE, rather than LESS mobile. Believe me, you and Jesse will amaze yourselves..can you use all that breastmilk you've built up? Or do they want it to be formula?

Now, take a deep breath, learn how to manage to tube while the nurses are with you (it will feel so easy in a few days but I remmber being totally intimidated at the beginnning), love Loki, and get back home to your kitties and your life.

circe said...

Lieve Loki, Lijn en Jesse,
Veel liefs, kracht en sterkte gewenst van Circe.

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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