Another Nate update

The last time I updated about Nate's issues we were focused on his reflux and his crying/screaming episodes. The upper GI did show reflux and delayed gastric emptying, which means that the contents of his stomach empty slower than average. But this isn't all that uncommon and the treatment options remain the same. The two medications we have him on now seem to be helping to some extent--we have good days and bad days but overall he is happy more of the time than he used to be, which is great.

Unfortunately, we did have a scary issue come up in the blood tests that we had done the same day as the GI. A few levels in his blood were elevated, including potassium, which can begin to affect heart function if it gets too high. So we repeated the tests the next week, with the hopes that the high levels had been a fluke. But they were still high, and we got a call from the pediatrician on the evening of Friday the 30th that we needed to go to the ER at the Children's Hospital right away for an EKG to make sure Nate's heart was functioning correctly. It was pretty scary, and Matt and I quickly left with Nate--thankfully Dad was in town for a visit and was able to stay home with Simon. (more on their dinner and bedtime adventures in a later post).

Nate's heart looked fine, which was a huge relief, but they took a third round of blood and the potassium remained high. We were sent home and the next day Nate started a medication to hopefully lower the potassium while we started on a series of blood tests over the next 2 weeks to try and identify an issue while constantly watching his levels.

We have been to Children's for blood draws (all from the vein, so sad to watch when they do it) about 7 or so times, and have crossed all kinds of things off the list as causes of this elevated potassium. We have stumped the partners at our pediatrician's office, the metabolic specialists, the GI team and the kidney specialists, even after a kidney ultrasound today. No one knows why this is happening.

So as of today, with his potassium being finally within the normal range (albeit the highest number that is still considered normal), we are stopping his potassium medication and starting to test once a week rather than every other day or so. He is so healthy in every other way--he has gained over 5 pounds since birth, is now eating well, meeting milestones and seems strong. We will have to stay very aware of his health and check these levels, but the hope is that this is just a strange fluke that isn't the result of something serious.

So...it's been a scary few weeks, and I hope we can move past them. He's almost 2 months old and as much as I hate to say it, I'm not sad to be past these tough couple of months. With his recent developments in smiling and playing a little, I'm excited to interact more with our sweet boy in the months and years to come!