Thursday, September 10, 2009

More procedures to come:

We have had a busy few weeks again, dealing with Loki's ongoing low grade fever and his regular specialist check ups. Finally it seems though as if there is some positive movement.

But first things first.... Dad was out of town visiting his grandmother in Indiana as she unfortunately is very ill. He was able to spend some quality time with her in the hospital, which he described as "way too familiar." In the mean while Loki and I received some much needed help from friends who brought over food, baby sat Loki for a few hours and cuddled with him as I got some housework done. Thank you all so very much, once again, for all the amazing support and offers to help out. It means a lot to us that we can so steadily count on the same people over and over again. We wish there was an easy way to show you our gratitude!

As said above, Loki still has an ongoing low grade fever, we're marking 4 weeks tomorrow! We have had two blood work ups, two chest x-rays, two urinalyses, stool sample and approximately eight Doctors visits to figure this one out. Our pediatrician, who has worked serious overtime on Loki's behalf, was able to contact the head of infectious disease at UCSF over the holiday weekend. He was able to set up an appointment for Loki with wonderful Dr. Whinetrub. She worked Loki into her schedule and finally, FINALLY, confirmed our own suspicion about the "why" of this mysterious fever. As I described to her what we had noticed since Loki has had the ng- tube placed, her sense is that Loki micro aspirates on his reflux. This means that milk comes up from the stomach through the esophagus into his throat and nose. Instead of smoothly going down the same route it came up, it goes down his respiratory tract. The difficulty with micro aspiration, at least from our perspective, is that it does not cause pneumonia, and thus it is hard to diagnose with certainty. I have been mentioning this for weeks to all the doctors we have seen as Loki is breathing faster and more heavily, often chokes (aspirates), coughs and sneezes after he has reflux and sometimes also when he drinks. Of course these tests were needed as to eliminate other issues, but it certainly is not fun to see Loki spend so many of his developing, awake hours in the car or in waiting rooms.

On a positive note, Dr. Whinetrub is pretty sure we now know the root of the issue and thus we can finally treat Loki. Treatment involves the placement of a gastric tube (g-tube) straight into his tummy. The GI doctor suspects that this may treat part of the reflux as it has worsened with the nasogastric-tube (ng-tube)in place. The esophageal sphincter is a little opened at all times, thus it is easier for milk to come back up. If this does not treat the issue well enough we may have to look into a fundoplication. However, Dr. Rhee (GI) would like to give Loki a chance until he is 12 months adjusted in February to outgrow his severe reflux symptoms. In addition to reflux Loki also has issues taking in age appropriate volume, he needs at least one hour of slow drip to process one feeding. This means we are looking at longer term tube feeding in which case a g-tube is more appropriate than the ng-tube anyway.

The g-tube placement is done surgically in two steps. Initially Loki will have a little tube in his stomach coming through his abdominal wall and skin to the surface. He will be hospitalized for two nights after the procedure. If all goes well he will receive a nice button after approximately three months which actually makes tube feedings easier than the ng-tube he has now. If the aspiration symptoms do not disappear or continue to be apparent when he drinks liquids by mouth Loki will also undergo a swallow study.

Unfortunately this is not all that needs to be addressed. During his last few examinations several Doctors have felt a "lump" in Loki's left abdominal area. It is very well possible this is nothing, or just his one, larger, well functioning kidney. However, because of history of kidney failure we will have another ultrasound to assess what is going on. In addition, I mentioned Loki's cute raspy and hoarse voice to the GI, as I was wondering if this was caused by the acidity of stomach fluid coming up frequently. She decided to investigate the vocal cords further. It is not uncommon for children who have been intubated for lengthy periods of time to have damaged vocal cords. This in turn can cause aspiration.

As much as we hoped to have have entered calmer waters by now, life with our former preemie trickster continues to be... well tricky! We are not yet in a space where we can "just" enjoy being parents. However grateful I am for this wondrous little boy in our lives, it saddens me to see Loki go through so much medical care on a daily basis.

During my work in early intervention I remember reading these endless medical files before meeting a new family, and usually be surprised about how "normal" and wonderful the family and the baby are doing. We are one of those families now. On the surface we just live our lives and move through our days. However, our days continue to be dictated by medical needs. There is some normalcy, for example Loki is taking a nap right now without needing to be held. At the same time Loki is a former preemie with amazing developmental skills and some pretty intense medical needs. As Dr. Whinetrub mentioned to Dr. Rhee, and forgive me if the quote is not precise "You hear about his medical background and wonder how this little boy is doing, but then you meet him and see this bright rose." I must say, he was charming during his visit, with his big smile, deep belly grunts for laughter and happy exploration of anything he can grab with his chubby little fingers. This kid is so much fun!!!

- Posted by mom, despite what the blog thinks

Now for the fun of it some pictures:

A couple weeks ago, with Mom:


Rolled over, looking through the back of the stroller:

All dressed up, with somewhere to go:

On the swing at Laureen's:


This looks fun:

Loki tries to hide his privates from Christine:

With occupational / feeding therapist Heather:

With Esti:

Suddenly asleep on the floor:


marieke said...

Jeetje, wat wordt dat kereltje groot zeg, ik kan niet wachten tot eind november!
Wat een onderzoeken en veranderingen weer, hopelijk levert de G-tube (niet te verwarren met G- string) wat gemak op en is de bult niks. Wat maken jullie veel mee, ongelooflijk.... Hele dikke kus XX

marieke said...

O, and by the way
In oktober is my birthday, can I order such a beautifull piece of art Loki paints please?

Richard en Maaike said...

Hoi, nou wij komen eraan hoor! Hoewel je ziekhuisdingen etc natuurlijk niet moet aanpassen omdat wij komen. We kunnen dan toch juist wat ondersteunen her en der. We zien wel wat we aantreffen. Ik hoor van ouders bij ons op het KDC altijd dat ze erg blij waren met een PEG-sonde (zo noemen ze dat hier). Het is weer een hobbel om te nemen, maar levert vaak veel op. En inderdaad neemt de reflux bij de meeste kinderen wat af. Ik gun het Loki ontzettend om hier wat minder last van te hebben.
Hij begint trouwens ook meer uiterlijke trekjes van mama's kant te krijgen. Ik moet zeggen dat ik jou er nog niet heel erg in zie, maar ik zie wel Marieke (ik ben al lang blij dat ik er iets in zie, want ik ben hier heel slecht in, het is dus een compliment :) ).
Nog 3 weekjes!!! Yippie!!
X Maaike

Anonymous said...

hey guys,

just read about whats going on. andy and i would love to help out in any way we can. i'm gonna give jesse a call and see what y'all need.

also, i saw that you mentioned Dr. Rhee. We have a doctor friend in san francisco named Dr. Michelle Rhee. is this the same person. if so, drop my name (cuzin e) and watch the perks roll in.


berkeleygal77 said...

Can I have a Loki masterpiece painting for Chanukah?

Kyra said...

Oh my, what a lot of troubles again! And already creati ve therapy. Or is this the attempt to make him move his tricks to a more 2D level? Loki the wizard, I hope you keep amazing us. Give mom and dad a big hug, they need that! And hopefully your plans for the holidays don't get messed up.

Maaike, let me know whe exactly you leave, so I can drop some stuff off.



Suzan said...
This comment has been removed by the author.
Suzan said...

Lieve allemaal,

Heel veel sterkte weer! En heel veel plezier met jullie kleine mooie man!
En een heleboel wensen dat al deze complicaties snel voorbij zijn.

Dikke zoenen van ons allemaal,
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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