Never a Dull Moment

It’s been a while since we’ve updated publicly about Kai. This is probably because a lot of things have been up in the air since this summer.  More likely, it’s because we’ve taken in so much information that our heads feel like they are spinning. As we have been working as a family to process what we’ve experienced the past year with Kai’s health, and work toward harvesting confusion and pain into wisdom, we’ll be the first to admit that it has been hard to do.  Trying to go on with life, keep track of obligations, and do “normal” things, often leaves little time to make sense of life. There are days when it feels downright overwhelming. Our days are whirlwinds. So, as it has been challenging to work through individually and as a family, it, naturally, is difficult to articulate to others what we’re facing and how we’re feeling. But, as we’re coming up to further medical procedures, I am going to attempt to give it a try. Here is a brief and condensed timeline of our past month or so.

I’ve mentioned previously in posts that Kai has experienced some complications and issues including low oxygen saturation levels (and cyanosis), even after his open heart surgery this past June. We have seen oxygen levels in the high-60s to the mid-90s, and everything in between. This has been something that we have been keeping a watchful eye on ever since. We’ve been especially attentive to this because it’s not common. Kai’s cardiologist has said that he hasn’t encountered his symptoms post-op before, so he had consulted other institutions, such as Boston Children’s Hospital and CHOP, regarding his situation. After consulting, it became increasingly clear that his symptoms were probably not a cardiac issue, but, rather a pulmonary issue. Because of the increasing frequency and duration of symptoms, we had been in contact with doctors throughout October, realizing that it could no longer be “let go”. So, (reluctantly) we scheduled surgery for Friday, November 20.

Because we never have a dull moment in the Timmer home, around the same time that we were trying to wrap our minds around pulmonary/lung issues and what that could possibly entail, Kai began having tachycardia issues. For non-medical readers, basically, he was having an abnormally fast heart rate.  These “episodes” would cause him to have a hard time catching his breath, profuse sweating, and nausea/vomiting.  He would also clutch his chest and say that his “heart was going too fast”. We discussed with the cardiologist different possibilities of problems with the heart’s electrical conduction system. To celebrate, tomorrow is the last day he needs to wear his heart monitor - -it’s been a month of crazy dry, itchy skin (from the “stickies” on his chest) and trying to keep a very curious 3-year-old from trying to push buttons that are attached to him!

As many of you are already aware, Kai ended up in the emergency room on Sunday. Remember what I just said about never having a dull moment?! Because of his heart defects, many people assumed that I had taken him there because of heart issues. Not specifically.

I knew he was sick with some sort of respiratory infection or virus. However, with all of his other health issues, even a common cold takes a huge toll on his little body and has been known to send him to the hospital.  So, respiratory illnesses need to be taken care of right away.  This is especially true if we’re now looking at lung problems. Plus, that morning he oxygen sats were quite low and he was struggling to breathe, even to the point of retracting and nasal flaring. After running some tests, we found out that he had bronchitis.  After being on some strong antibiotics since then, he’s now feeling much better, as far as the bronchitis goes.

Although I was frustrated that he was sick… and we needed to head to the hospital again… and he had to go through tests… and he needed to be on more meds, I realize now that it was probably a blessing in disguise, as we found some further, unexpected heart failure issues. As much as I was devastated Sunday, because really I – he—we did not need one more problem to try to work through, I’m thankful now that we discovered this and can now work toward treating it. So, we’re now managing with meds and working on developing a plan, keeping our scheduled surgery date for next week. Realistically, we know that our options to “fix” this are becoming limited. But, we’re hopeful that he’ll come through this stronger, like he always does. Hey, since Sunday, he’s lost almost 4 pounds of fluid, so that’s a start!

There is no doubt about it, Kai is a fighter. There is nothing –not even heart failure or surgery or a heartrate of 300 beats per minute-that can keep him down for long.  He’s happy, silly, and spunky even in the midst of all of this. So much so, that sometimes we forget how much his little body is going through and how miserable he probably really feels. We often have people say that “he looks so healthy” or “he acts so happy” or “you’d never know that something is wrong.” It’s easy to forget how complex his health issues are because of how full of life he is.  If only looking good was a true indicator of health! Even as parents, now that he’s feeling SO better with antibiotics and the bronchitis is clearing up, it’s hard not to be in denial that there are more concerning underlying issues going on. But, as Chris said tonight, “he looks so much better than he has in the last week, but I’m more worried than ever.”  I can’t imagine what all of this would be like if he didn’t have such an upbeat personality and demeanor!

So, the long and short of our month has involved continued and new cardiac and pulmonary issues.  We’d appreciate your prayers for:

* wisdom for doctors and us, as parents… that we thoughtfully determine the right course of treatment.

*being free from any viruses, infections, etc. so we can just focus on the major cardiac and pulmonary issues AND so that sickness doesn’t interfere with treatment.

*rest…we ALL need sleep.

*peace with considering the possibility of travel.

*Kai’s continued zest for life, in spite of all that he goes through and how he feels, even when it doesn't show on the surface.

Thanks!