Sunday, November 8, 2009

Surgery Tuesday; Recap and update of a very difficult week+

First off, Mom and I thank everyone for their words and offers of support over the last days.

Loki will undergo surgery on Tuesday to replace his G-tube button. Unfortunately, he is not yet big enough to upgrade to the Mic-Key--an upgrade he will still undergo in a couple months or so. Instead, he is getting the same style of button , only one that was not damaged by a nurse. Yes, this surgery is solely due to someone's negligence. It will take place at UCSF, and require one overnight.

The last ten days or so have been among our most difficult. Mom was nice enough to let me go to a three day camping and music event in southern California. Not long after I left, she got a bad stomach flu. And the next day, Loki was sick and unable to keep anything down. He recovered somewhat after I returned on Monday, but then got worse when I left unexpectedly for a few days soon after (more on that below). We (that is, mainly Mom) greatly slowed his feedings. Instead of 45 minutes, they now last one hour and 45 minutes. Since the feedings occur every three hours, Loki is on the pump the majority of the time. And the feedings were switched to Pedialyte, and then gradually the proportion of milk or formula was increased (or decreased) as Loki improved (or worsened). But in the process, he lost over a pound, and that is noticeable. He is now getting half and half for his feedings.

While I had a good time on my trip, I had a lot on my mind. I was worried about Mom and Loki, and I was worried about picking up germs while camping with thirty thousand people from all over the country. I was careful, and upon returning I kept my distance from Mom and Loki. But on Wednesday, I learned that a couple people whom I saw on my trip had recently (one of them) and currently (the other) had a flu that was likely H1N1. Because of their irresponsibility, I left home for a few days to wait out the incubation period, which the US government reports as probably one to four days but may be up to seven days. Furthermore, I had minor symptoms of something. Although the nurses and doctors and nurses initially said that I should wait out the full seven days, by Friday (Day 5), they said that the benefits of my presence at home (such as cheering up Loki) outweighed the disadvantages--as long as I was careful. Thus, I have been wearing a face mask and sleeping on the couch.

Fortunately, both Mom and I yesterday were able to get our H1N1 immunity shots from the county department of public health. Unfortunately, I was convinced to take the nasal spray, which contains some live virus. I woke up today feeling quite bad, although I don't expect this to last long.

Loki is now crawling quite well. And as Mom predicted, once he was finally able to achieve this goal, much other development would occur. For example, he can now pull himself up to standing, and can stand for quite some time (while holding to something with one hand, of course).

Tomorrow, Loki goes for his evaluation for feeding therapy. Hopefully he will pass (or fail, depending on how you look at it), and our insurance will begin coverage.

Tonight, Mom and our friend Christine (who now lives in our apartment complex) will go out to see some music at the refurbished and beautiful Fox Theater, which happens to be across the street. She deserves the break!

And tomorrow, Oma Heleen leaves to return to the old country. We will certainly miss her!

We don't have recent photos, as I accidentally ran our camera through the laundry. But here are a few leftovers:

A couple weekends ago, Loki went to the forest for first time:

He liked to look up into the canopy as we walked:

Dad and Dude:

Happy Mom and Happy Loki:


Sarah Marcus said...

Wow, what a crazy few weeks. I hope getting a new button will help the feedings significantly. Hope you are both feeling better.
Much Love,

Inge (sister of Maaike) said...

Oh my, it looks like it won't stop. Every day I check for information, hoping to read positive stuff, so you can take a breath. But, what gives me a smile of relieve are all the things Loki does like crawling, starting a fun game with mom, developing in more than one way.
What else can I say than 'Wow, for all you three, for making a deifference, for loving, for living, for fighting and for believing.'
Love, Inge

Cheryl said...

I am really looking forward to the day we all read these posts as "remember how hard that was, way back when". Until then, as I sit here with Bri burning up with fever, just remember that even in these hard times, there are those smiles, and small steps forward to enjoy, and you have each other. Loki has added so much to your lives, and your experiences are earning paying you forward to an easy teenager, I hope!
Love to you all,
and big squeeze to my little friend before his surgery--he's getting old enough that I know these things get tougher because you see his anxiety--

Mom said...

Thank you for the sweet mesages once again! Inge, congratulations with a niece on the way! Very exciting!

Mascha Rodeck said...

Another surgery, and only because somebody else - a professional no less - messed up.

I am really sorry you all have to go through this, but I hope Loki will do a lot better after that, and recover and fatten up again.

Much love,

Circe said...

sterkte met de komende ziekenhuis opname. Heel veel voorspoed wensen we jullie toe!

Frits said...

I guess I'm the only one who got good news: oma is coming home! And some minor good news for you: we have plenty of photo's from Loki's wonderful first birthday party. I'll send them soon. Needless to say: Love and take care, opa Frits

Richard en Maaike said...

OMG, what a week. The good thing is: you survived another challenge! Again, things can only get better from now on.
Superb news that Loki can crawl and shows a lot of other things, like standing. I know you were waiting for this moment for several weeks now.
I hope that Loki feels better soon and that the surgery will fix a lot of problems you had to deal with the last couple weeks. Good luck!!
Kus Maaike

Elaine Stiles said...

We hope all goes well with the surgery today and that this will be the beginning of an easier time for all of you. Congratulations to the little man on his new skills. Just goes to show you can't keep a good baby down. :) E, R, M & M

Mom said...

Thanks all!!!!

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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