Sunday, August 16, 2009

A bit sick; Tangled tubes; Hoping for feeding therapy

Loki appears to be a bit sick. He has had a very mild fever on and off, and his energy level is a bit low. His breathing is sometimes quite strained and raspy. Mom took him to the doctor, and we need to watch him closely. If he still has a low fever Sunday evening, then he goes to the doctor Monday morning.

There is a potential ironic upside to being sick: He needs to gradually strengthen his immune system by being exposed to various germs. This will sometimes include getting sick. Thus, a mild illness may be a good thing, overall.

Loki continues to grow and develop rapidly. Today he is 14 lbs 6 oz (6.52 kg), and is adding about 9 ounces each week. Today he was able to bear more weight while trying to lift his stomach up and be on all four limbs. He also rolled over a bunch in bed. He can sit up and rest his the weight of his upper body forward onto his straight arms. Best of all, he is falling asleep on his own--usually within 15 minutes, with some crying.

This is all good, but we ran into a problem. He was crying in bed, and we let him go for a few minutes, perhaps allowing him to fall back asleep. When he didn't stop crying, I went in to check on him. His feeding tube (which was connected to the pump) was wrapped around his neck. He was struggling a bit to breathe.

Obviously, we need to do something about this. We put his tube under his shirt, taped at its bottom, through a small hole that I cut in the middle of his bed sheet, under and out the sheet, then to the pump. This seems to be the position with the least likelihood of getting wrapped up. We will also buy a video monitor tomorrow.

Loki's MAG3 scan of his kidney was Tuesday. It was very unpleasant for Loki. He got an IV and was strapped down for 90 minutes, crying loudly the whole time. We haven't heard any results. But bad news travels fast, so we don't worry.

Loki goes to the gastroenterologist on Thursday. Perhaps we can learn more then.

Our medical insurance may cover his feeding therapy. If it is considered a medically-caused (and not behaviorally-cased) food aversion, then it should be included. Keep your fingers crossed.

We are able to have a bit of fun. Mom has taken Loki swimming for several afternoons. Today we had some friends over. Although Loki did not swim, he had fun with our guests, particularly little 4 year old Anna. He sat on her lap and sort of "played" with her. Very cute.

We are planning a week vacation in September to Santa Catalina Island off the coast of Los Angeles. Obviously, we are very much looking forward to this. But also, I, for one, am a bit nervous. We have never even driven more than an hour with Loki, much less fed on the road and stayed in hotels. This is seven hours of driving, then a ferry. And we'll need to transition to a nearly-totally formula diet. We can't take frozen breast milk. Our hotel on the island, though, is quite friendly and accommodating.


Cheryl said...

Well, I'm sorry about missing the swim party--just too much going on today. Glad you had fun, and sorry to hear Loki is under the weather. Yes, I hope insurance will pay, given that you can push the GI docs to emphasize the reflux impact on feeding. But may not pay the wonderful Heather, I fear. I'm keeping fingers crossed. A vacation--good for you. You will learn one thing as parents--all vacations are a ton of work and worry, but once you actually GET there, it's worth it! Hopefully, the kidney test will be fine now that the hydration is better...thanks for keeping us up to date.

Cheryl said...

Also, re: tube tangles, this happened at first for me too. My solution was to tape down the inside of her pajama bottoms, so it came out at her ankle, then I cut a hole in all her crib sheets so I could feed tube under the sheet thus giving her lots of tubing to move with, but keeping it under the sheet and out of the way. Worked as long as she didn't lay on it and keep it from moving with her...I hated night feeds for that reason as I never felt I could relax, but looking back, they got us off to a strong start with the feeding and helped a lot iwth the reflux. How is that, anyway?

Richard en Maaike said...

Het is ook goed om te horen dat Loki gewoon een beetje ziek is en dat hij niet door zoiets meteen erg ziek is. Hij kan nu inderdaad weerstand opbouwen. Jullie hebben het al erg goed gedaan om hem te beschermen en dat hij pas nu een beetje ziek is.
Wat wij deden met voedingsslangetjes is tape om het slangetje als een sort vlaggetje, zodat je dat vlaggetje met een veiligheidsspeld vast kan zetten. Kun je dan niet via zijn voeten de slag 'afvoeren'? Of draait hij zijn hele bed door, dan is dat ook niet handig.
X Maaike

Kyra said...

Lieve loki,

Beterschap! En wat een goed idee om lekker op vakantie te gaan. Lekker even los van alles, gewoon samen. Veel voorpret alvast.


Karin said...

Dear Lijn and Jesse,

I did not react for quite a while, because of a very busy life here.
I do care for cats from people who are on holiday and the mmonth of july was very busy!
But it's very nice work to do, the people and the cats are very grateful.
But I do read Loki's Blog almost every day and hope so much that your holiday will give you both and Loki lot's of pleasure.
You need it so much after all the problems and care for Loki and still you have I understand.
He keeps on fighting this wonderful guy, I do admire him so much!!And of course both of you!
I do enjoy Loki's talking and the wonderful video's while you and he are swimming.
Take care enjoy your holiday. a hug for all of you.
Love from Karin (Amsterdam)

Elizabeth said...

Sorry to have missed pool time yesterday - thinking of you and look forward to seeing you soon! Sorry to hear that Loki is under the weather - but goo d to hear that he is gaining weight and strength, generally. Please let us know if there's anything we can help out with.

Greet said...

lieve Kathalijn, vandaag weer alles gelezen van de afgelopen maand, wat is er veel gebeurd met jullie mannetje, oeps wat vermoeiend allemaal, het zwemmen is erg leuk om te zien.sorry dat ik zolang niets heb laten horen, ik ben zo aan het rouwen dat ik er gewoon niet aan gedacht heb, ik hield meer van Bob dan dat ik dacht de pijn in m'n hart is zo groot.
liefs van Greet

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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