Monday, June 21, 2010

Good news and concerns

Loki has underwent some changes in his development, diet, and health. The news is mixed.

First, Loki took his first real steps just after two of his Dutch grandparents arrived (Opa F. and Oma H.). This has been a long time coming, but regardless is very exciting.

The good news is that Loki's tube feeding appears to have turned a corner. For about four months, we were feeding him Compleat Pediatric, a liquid food of real ingredients designed for g-tubes. A few weeks ago, on the advice of fellow feeding tube parents, Mom finally attempted to make a batch of homemade food. We had earlier received a book from another g-tube parent, but thus far we had been intimidated by the process. We are generally able to get this new food into Loki much faster, and he throws up much less. This means more sleep for us, and less cleaning of dirty laundry. Preparing the food is a lot of work, and bits of food get stuck in his tube's extension. We've borrowed a better immersion blender; that may do the trick.

We've actually had some particularly good eating sessions lately. This may be related to his improved tube feeding. Instead of an almost continuous feeding (shot every 10 to 15 minutes), or six or five tube "meals" (our pattern for a month or two), the new food allows us to have only three, larger feedings. Loki thus gets hungry between feedings, and eats better. We also continue to improve our understanding of what he likes to eat. He loves pesto by the spoonful, for example. So we mixed it with some other foods, and he eats it up reasonably well.

Unfortunately, over the past five days Loki's tolerance has decreased and vomiting has increased again, probably due to the lower dosage of Zantac we give him per G.I. doctor's order. The dosage has gone back up. Sadly, since the recent vomiting spells he has lost almost 1 kg (2.2 lbs).

Also, Friday night Loki was fussy and woke up with a fever of 38.8 C (101.8 F). At the end of the day it had gone up to 39.8 C (102.9 F). His mic-key button site is quite red. The doctor suspects an infection. Loki was started on antibiotics yesterday.

Loki recently had both his upper GI series (which we reported on previously) and swallow study. They were quick yet traumatic. Loki cried, screamed and kicked his arms and legs in the air, all to no avail. The barium was pushed in and no issues were detected. Mom writes, "I must say I continue to mentally challenge the process though. Most of the barium ended up on the Doctor's pants. Which doctor does not know how to manage the most common of all feeding tubes? Oh well."

The other challenging news is that, after a routine kidney examination, Loki was found to have elevated protein in his urine and elevated blood urea nitrogen (BUN) levels in his blood. Protein initially measured 1.2 but went down to 0.7 three days later. BUN is normally 10 to 15; Loki's was 17. Mom also wrote about this in February. High protein could imply either:

  • A poorly functioning kidney caused by...
    • wearing down of filtration units. Premature infants are born with less units than normal because the kidney is not optimally developed at birth. In addition, Loki only has one kidney, which has experienced significant trauma. 
    • increased hydronephrosis due to another obstruction. His large urine output and bloodwork indicates that this is unlikely.
    • nephrocalcinosis (calcium build up due to dehydration). 
  • And / or too much protein in his diet.

With the help of the Internet, we determined that Loki's blenderized food was providing him with 39 g protein per day, but he only needs 14 g. So while a normal pair of kidneys can handle a high protein diet, we need to be careful with him. We have been researching the web, shopping for new foods, and talking to the nutritionist to develop a lot protein diet, both blenderized and spoon-fed. The doctor assumes the high protein diet is the most likely explanation. Thus, we are adjusting his diet for now and will do a urine test next month.

When high BUN is not accompanied by elevated creatinine, the most likely explanation is suboptimal urine concentration. Loki's kidney produces too much watery urine, therefore unable to appropriately remove electrolytes from his system. Despite several overflow diapers per day, Loki needs increased water intake to "keep up" with large urine production. Instead of the 25% extra we were giving him we have gone up to almost 50% extra water for a child his weight (1.5 liter of water per day in addition to his food).

The last bit of news is that Loki is coughing a lot at night. This is not uncommon in kids with mic-key buttons, but for whatever reason we have been lucky until now. Our best guess as to the cause is that lack of fluid intake by mouth may cause mucus build up in his esophagus, which starts to bother him when he lies down. As with his previous spell of night grunting, this is worse later, from 4 to 7 AM. We often get up, pat his chest rather hard, and comfort him, which helps him fall back asleep.

Despite health issues, Loki continues to be a happy, funny toddler who cracks himself up when he burps. He is a cuddle bum, loves his babies, cars, pens and bubbles. He is slowly talking more, expanding his spoken vocabulary including new words "luier" (diaper) and "wagon."


Kyra said...

Wow, what a compete set of challenges once again! I wish I could do more but think of you.


Richard en Maaike said...

Wat een uitdagingen allemaal weer. Maar ook veel positieve ontwikkelingen! Super!

The Fitch-Jenett Family said...

Ah, the mixed bag. How I hate those. I'm so excited that he's walking (!) and so sorry that you have questions up in the air re: his kidney and a G-tube infection. I have my fingers crossed for you to have a long stretch of no bumps in the road :-)


marieke said...

O Lokidoki toch, en mom and dad, opnieuw zoeken naar oplossingen. Het is echt een dagtaak! Ik heb veel respect voor jullie..... tot snel!! XXXX marieke

Suzan said...

Dear mom, dad and Loki,
We wish all of you a much easier time soon!
Much love,
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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