T-Shirts

I intended to include this in our last post, however completely forgot! Anyway, we have had multiple people ask about purchasing Team Kai shirts recently. So, we will be placing another order, hopefully by the end of the week! Shirts are unisex sizing and are $10 each (you can pay me directly or though our PayPal account. I can give information for those interested.)


Here is the adorable Kai modeling--who can resist?!

Please let me know by Friday, March 18 if you are interested in ordering; you can comment on the blog, email, or message me on Facebook. 

Thanks!

Expect the Unexpected

“That's your solution? Have a cookie?' Astrid asked.

 'No, my solution is to run down to the beach and hide out until this is all over,' Sam said. 'But a cookie never hurts.” 

While I was reading a book titled, Gone, last summer after Kai had heart surgery, I remember coming across this dialogue. I laughed out loud; it was so indicative of how I felt at that time. Just overwhelmed with  all things "hospital" and ready to run down to the beach with a cookie (or chocolate and a Diet Coke) to escape reality for a while. 

I'd be lying if I said we didn't all slightly feel that way again. A beach and a cookie sound exceptionally good at the moment.  The past 2 weeks have been a whirlwind of new doctors, medications, testing. The list could go on and on. While I'm not going to share all of Kai's story, I thought I'd share just a bit of what our experience has been lately.

As I've posted previously, Kai has been experiencing hematochezia, or GI bleeding. To help alleviate this, Kai was scheduled for a polypectomy on Monday, February 29.  While I would not consider Kai a "morning person", as Sam lovingly refers to him as Grumpy Cat, he seemed unusually tired and whiny that morning. Once embarking on the 3 hour car ride, the crabbiness continued; however, we were delightfully surprised when he began to sit quietly and take a nap around the Lansing area. Upon arrival, we began to recognize that his sudden compliance was not actually a good thing. Kai was lethargic and unable to walk or speak. (For those of you who know Kai, he is rarely at a loss for words.) 

Within moments of heading back in the PACU, Kai's little body began to give up. He became unresponsive, along with other signs of trauma. While we originally had thought that this was possibly contributed to blood loss and a drop in hemoglobin, we learned through his blood gas testing that his blood sugar had dropped into the teens. This, of course, is a level that cannot continue to support life.  I've seen medical staff move quickly before when Kai has coded, but it was almost surreal how fast they moved. Really, thinking back on it know, it's sort of a blur. There were things happening that Chris and I didn't even realize until after the fact. 

Throughout that day,  his glucose levels continued to fluctuate dramatically. He was given emergency dextrose 3 times, along with dextrose being given via IV. The extreme blood sugar issues were attributed to how his complex anatomy was able, or unable, rather, to store glucose in the liver.  

By the following day we  seemed to have the blood sugar issues figured out and we were on our way home. True, we didn't get the bleeding issue resolved, but had plans to look at surgical procedures in the near future. 

While Kai felt miserable for most of the week, we knew that we were on the right track to helping him feel more like himself. We knew we were on the right track- that is until Friday morning. Kai was presenting similar symptoms to those he had Monday morning: lethargy, inability to stand or walk, inability to speak, and so on. Sure enough, testing showed that his blood sugar levels had dipped again. Because of his complex health history, local doctors told us to contact U of M, that there was nothing they could/would do.

Long story short, back to Ann Arbor we went. And quickly. Once there, we met with endocrinology...and cardiology...and  GI...and neurology...and  genetics. Who am I missing?!  All of this was so unexpected.

This is the part where I'm not going to share the whole story--partly because we're still trying to process all of the information that came at us this past week. To be honest, I don't think I can, at this time, even effectively articulate all of the scenarios and medical possibilities that we discussed with his team. It was mind boggling. However, it was 6 days of trying to fix the medical problems that he is experiencing at the moment...the GI bleeding, the low glucose levels, seizure activity that we had attributed to low blood sugar but learned was neurological, liver issues, concerns for something called fatty acid oxidation disorder, possible complications with Protein Losing Enteropathy, along with many other conditions I had never heard of before. Just today I received a call about an immediate confirmed kidney issue.

We don't have answers to all of these things yet, but hope to soon. He has several upcoming appointments in Ann Arbor to help resolve some of these issues.

But, as the list of medical problems seems to grow and grow, it became increasingly apparent that we also needed these hospital days to be 6 days of trying to figure out why he continues to develop complications.  Essentially, we spent time trying to put together the pieces of his medical puzzle. How is it possible for a  child to have severe, complex heart defects, pulmonary complications, GI malformations, neurological symptoms, kidney disorders?? While we won't have any answers from genetics for several weeks, we are looking the possibility of an underlying syndrome - a chromosome addition or deletion-that may be a contributing factor. While we know science is not at a point where it can "fix" chromosome disorders, having knowledge of his genetic code, we hope, will shed some light on how his body functions, which, in turn may help us to treat his many medical needs.

Until we have results, we'll just keep plugging along. As much as we feel like it, we won't really run away and hide :) Although I will probably have to keep reminding myself of that!

Thank you to everyone who supported us this week.  I know that I haven't had time to reply to them all, but thanks for the emails, texts, FB messages, etc.  It's incredibly humbling to have so many people thinking of and praying for our family!