Tuesday, March 22, 2011

Reflux test tomorrow

Loki still has quite a few medical appointments. We'll write a summary soon, but for now wish to describe what we are doing this week.

Although he clearly has reflux, thus far it has not directly and inclusively observed in medical tests. The diagnosis is based on clinical observations by a variety of specialists. However, since Loki continues to throw up and have difficulties eating, his doctor is still considering a Nissen fundoplication. In order to consider such a serious surgery, the reflux has to be concluded based on a test. Tests in the past (1, 2) have not succeeded in giving useful results. So tomorrow he will start esophageal pH monitoring. He will get a special NG tube, which is inserted into his nose and down into his stomach. An X-ray will then be used to ensure that it is in exactly the right place, as this tube has pH (acidity) monitors, one for his stomach and one for his esophagus. Outside, the tube goes to a small monitoring device, and this all must stay in for 24 hours. Hopefully, this will provide solid evidence as to what exactly is going into his stomach, and help us decide whether he should have surgery.

A couple things are making this tough. One is that we had to stop his two reflux medications on Saturday. This has caused Loki to throw up a lot (i.e. six big throw ups today, three huge ones yesterday). We can't resume the medications until Thursday, and then it will take a couple days for them to take effect. In a bad case scenario, his vomiting causes so much loss of fluids that the doctors decide to not go through with the test.

The other aspect which is making this process a bit more difficult for us is that, although Loki has gone through worse, he is now older. He can now tell us how unpleasant the insertion of the NG tube is, and he will remember this more consciously. As we have been preparing him for the procedure, he shows some anxiety about the possible pain he will feel. Fortunately the promise of a tiny gift for him to play with tomorrow afternoon still makes him burst into a happy "hooray." Poor little guy!

7 comments:

Mascha said...

Oh, wow. That is a big one for little Loki. And yes, it gets more challenging the more aware they are about their procedures. I sincerely hope he will not dehydrate with all the throwing up, and that he can actually get tested. I am anxiously awaiting the results. That surgery is no small thing, either.

Much love,
Mascha

Elizabeth said...

Poor guy! I am sure he will be strong and brave for this test and hope that it provides some better guidance for your decision on whether to pursue surgery. Keep us posted on results and next steps. Love to all! liz

marieke said...

O lieve Loki mama en daddy,
I was on the phone with mama seconds ago and she told me how brave you were with the test!! It was not nice (niet fijn)and you had to cry but that's fine! Its better to throw out all the frustration. I can imagine how sad mama was when she saw you so sad. Very big hug for you Looks, see you in a day or so!! Another very big hug for mama who is so dedicated to this little dude and a very big hug for daddy who is at work thinking about his little loki doki.
XX Tante marieke

Kyra said...

LIeve lieve Loookster, en lieve Lijn en Jess,

Heel veel succes, we gaan aan jullie denken morgen. Kusjes, Erwin, Kyra, Muus en Lova

Anonymous said...

This sounds like an incredibly rough few days leading up to the test, K. I hope that the test is able to give you definitive answers and clear-cut results. Sending VERY hydrated thoughts your way. Hang in there, little big tough guy. xo

edumesnil said...

Ooops. "Anonymous" is me, Elisa ... Bennett's mama. ;)

Suzan said...

Hoi,Hoe is het nu? Hoop dat het gelukt is! Heel veel sterkte en liefs gewenst! 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.

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