Friday, June 25, 2010

Quick Thursday evening update

Loki is gradually doing better but will stay in the hospital at least one more night. He barely coughed today, except a bit while sleeping. It remains unclear to what extent his cough is gone, versus just being suppressed by albuterol. The albuterol doses were reduced from every three to every four hours. We'll be sent home with some to use as needed. Loki does not enjoy receiving it. We will put a little mask over his mouth and nose, and he must breathe the gas for ten seconds, four times per dose.

There is still no diagnosis, but a respiratory virus is likely. In a strange way, we hope it is a relatively severe illness, like respiratory syncytial virus. If this is how he responds to a common chest cold, then we are in for trouble. But if this is RSV or similar, then his response is more typical.

At the hospital, he also received a daily steroid and a new antibiotic for his ear and g-tube site infections. This is all in addition to his two medicines to fight his reflux.

I spent most of the day at the hospital with Loki, while Mom was at home getting some rest. She is at the hospital now doing another overnight. This is not an ideal wedding anniversary, but I suppose we should not be surprised by our Trickster. I share Mom's sentiments. While it is reassuring that we do well as a couple during these challenging times, I wish we could just have some normal time.

Today Luna visited and dropped off a huge amount of delicious food, coffee, magazines,and books and balloons for Loki. She went above and beyond, and really brightened our day. Thanks!


Mascha said...

Really glad that he is on a 4-hour Albuterol treatment now that will allow him to go home soon, and really curious about the test results as well.

The antibiotics should do their magic tomorrow as well, and he will hopefully be much better soon.

I also can't believe you are communicating via face book and blog on this special day.
But you ARE very special people.

Much love and fast healing.

Kyra said...

Hee lieve mama en daddy,

Your hopes are mine. If anything, this blog can help out. Everybody, send some healing cyberpower over. If we have to communicate over the internet, then let's give Loki some breath as well as his parents. I am sending airy cyberballoons.

Indeed, hang in there, try to get a lot of sleep and give hugs to lokipoki.

xx Kyra

Anonymous said...

Hoi Lieverds daar,
heel veel sterkte en alle goeds! gewenst!

marieke said...

Dear mom and dad,
Wouw, is it that long ago we had you wedding in the berkshire Hills? That was a nice few days!!

You are both the strongest people with the most of love in their body I know in the world. When you are in the Netherlands I will make time to do lokisitting so you can go to the sauna in Goch with the beach and the lake to swim in.

I will cuddle him a lot because I allready have a huge box of cuddles to use:-)

Zet m op!!! XXXX

Anonymous said...

My grandson, age 8, just got over pertussis. This is the same little guy who stopped breathing after explosure to peanuts...this is such a scary thing to deal with, because seeing a child struggle to breathe is terrifying. Pertussis is epidemic in California right now (see the NYT from Monday which has a piece on it) And I so understand your wish to have it be something that would explain severity. . As you know, I went through many episodes of reactive airway emergencies with Bri--Still have a nebulizer at home, used to have to treat her twice a day with pulmicort and albuterol. Had an asthma public health nurse come out and go all through my house looking for ways to identify triggers, etc. Today--nothing. it was very much related to the reflux, and nasty viruses.And of course, the more mobile they get, the more they pick up germies...yet we must let them explore their world! Please let me know if you need anything over the weekend. And yes, what we call the albuterol crazies are really something--but believe me, NOTHING compared with the prednizone psychosis that comes when they don't respond to just albuterol...Remember "here's Johnny" (Jack nicholson)? like that crazy!
This too shall pass. And then, a belated anniversary dinner out? YOur marriage is incredibly strong--but the universe needs to give you a break now...

Mom said...

Thanks all!!

Cheryl, they suspect it may have been one of those reactive airway emergencies, just based on how he responds to the meds. Scary indeed to see your child struggle to breath. We do have him on prednizone as well; the little guy scares me! He latches out and scratches really hard (both J and I have war wounds). The redirections and clear limits do not have any impact on him, crazy to see. Only two more days of prednizone. Hopefully the flovent isn't quite as intense because he will stay on that one for 3 weeks!

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.
See videos.

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