Thursday, October 8, 2009

OK, maybe not all is well

So as Mom mentioned, we are having problems with the G-tube. One was strangely beneficial, the other is totally difficult.

Although Loki experienced less discomfort during the first 24 hours of feedings on the new tube, after that he had more. Because of this, and the second problem, we tried switching from the pump to bolus feedings, in which we slowly push a large food-filled syringe connected to a tube and his button in order to feed him. Instead of one hour of continuous pumping, we are now giving him three five-minute "bursts," separated by 30 minutes from each other. Not only is he more comfortable, but this is the next step towards better feeding habits. We'll gradually make the first "burst" bigger, and the latter two smaller, until we are just one five minute burst per feeding. The drawback is that, overnight, we currently must slowly push the syringe at 1:00 AM, 1:30, and 2:00. This amounts to 90 minutes with little sleep. We decided to let him sleep through the 4:00 AM feeding!

The second problem has been mentioned: The tube too easily comes out of the button that was installed in Loki's abdomen. Keep in mind that all along this is a temporary plug, in which a tube just slides into a hole. After three months, this plug would come out and he'd get a "Mic-Key," which has a locking mechanism. (That change will require a procedure with general anesthetics, but not an overnight stay in the hospital.) During those three months, though, the fitting would gradually become looser and looser.

But today, the GI (Dr. Rhee) who put in the plug was shocked at just how loose the fitting had become. This problem appears to have been traced to a nurse who, in the hospital, forced in a syringe with a larger fitting directly into the plug. This loosened the fitting. Dr. Rhee is very upset and will file a report. The switch to the Mic-Key will now happen as early as possible, perhaps at just one month. In the meantime, we were given a stretchy elastic band to put around Loki's waist to help hold in the tube during a feeding. It is going to be a long four weeks!

I've been meaning to mention that Loki is now 17 pounds, 2 ounces, or almost 7.8 kilograms.

As mentioned, Richard and Maaike from Nederland were here for the past week, and they provided amazing support. They visited us at the hospital during their only weekend during their first vacation without their own little man. They provided much help around the house. Maaike is trained in both nursing and child development, and thus had great advice on the G-tube and other aspects. And Richard is a designer who did our birth announcement cards, and used that design to redesign this blog. So mucho gracias to them!

Tomorrow, Mom's mom (Oma Heleen) and step father (Opa Frits) arrive. We look forward to it.

Off to the next burst....


marieke said...

Sjonge, jonge, da's niet handig van die zuster! Mooi balen zeg maar. Hoop dat mama en frits een beetje verlichting brengen zodat jullie ook kunnen slapen.

Richard en Maaike said...

Jezus, wat een ellende veroorzaakt zo'n verpleegkundige zeg!! Terecht dat dr. Rhee daar iets mee gaat doen. Ik hoop dat het met de elastische band beter gaat dan met de strakke rompers en dat het klepje nu niet meer zo makkelijk spontaan kan losschieten. Kun je hem ook gebruiken tijdens de voeding? Het is wel erg fijn dat ze de Mic-key er sneller in gaan zetten.
We hebben het erg fijn gehad bij jullie en kijken terug op een 'goede' vakantie (de haakjes vanwege alle bobbels op de weg deze week voor jullie).
Houd vol!!! En denk ook aan jullie zelf!!
Dikke zoen (helaas weer van grote afstand), Maaike

Circe said...

Ik wens jullie veel sterkte met de hobbels en bobbels op de weg!! De blog ziet er in nieuwe stijl stoer uit. Dat is heel leuk. Maar dat het Loki en jullie snel ├ęcht goed mag gaat lijkt me nog stukken beter. Goede tijd met opa en oma in jullie buurt.
Liefs, Circe

Greet said...

lieve , wat een gedoe allemaal, wat fijn dat Heleen en Frits komen, de hulp kunnen jullie goed gebruiken, sterkte , ik zou zo graag wat willen doen, denken aan jullie en liefde en warmte sturen, daar blijft het bij, veel liefs Greet

Cheryl said...

Good grief. It's always something. But the bolus feeding is great news. I found it changed everything. I so hated the pump going all night, and by doing one last bolus before bed, and one first thing in the am, I could cut out the all night deal. Life got SO much easier after that! And the MicKey coming earlier worked fine for us--ours went in only a month after the initial surgery, too. Hang in.

Mascha Rodeck said...

This is almost unbelievable. If this wasn't public, I'd be tempted to start swearing. What did this nurse do to mess this up?
Well, let's focus on the present and the future. I'm so glad you had great support, and grandparents are coming back. I sure hope your feedings will get easier soon, and your nights will become restful.

See you very soon.

Big hugs,

Suzan said...

Ongelofelijk wat jullie allemaal moeten doormaken! Wij wensen jullie heel veel sterkte de komende 4 weken.

Heel veel liefs,
Johan, Suzan en Phileine

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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