Update on Sam's medical condition

I have so much that I want to update you all on since we got home with Sam--including posting many more pictures. But by the time he's asleep for the night, I barely have enough energy to get to bed myself! Hopefully I'll be able to get more pics up during his nap one of these days.

I know many of you have been praying for Sam's medical condition, and so I wanted to give you an update so you could join us in prayer for his little body. We saw a pediatrician here in Gainesville the Monday after we got home (last week). She was wonderful and so encouraging and helpful as we were trying to figure things out. She agreed that we needed to see a urologist, as well as a kidney doc and a cardiologist (He has a small heart murmur--no big deal at all, but we just want to be sure it's OK. We see that doc this Friday.).

So, I called the pediatric urologist at the clinic in Jacksonville (there are none in Gainesville) and was told their first available appointment was July 29. What?! I explained that this poor child has been catheterized for almost a year and desperately needs surgery. We could not wait that long. She was, unfortunately, not helpful. I called our pediatrician back, and she agreed to call the clinic. Friday night, I got a phone call from the triage nurse in Jax (That's short for Jacksonville for you non-Floridians :-)). She was so understanding and empathetic and said she had personally asked the doc for a favor and he was going to squeeze us between appointments on Monday! Praise God for such a quick answer to prayer.

So, we drove to Jax yesterday and found the doctor to be so kind, understanding, and helpful. He's the head of the pediatric urology department, which was wonderful. We gave him the translations of the medical info from Russia, as well as the x-rays they'd given us. He said based on this info, he agreed with their diagnosis. The short explanation is that he has a reflux of urine going back up from his bladder into his kidneys. He has something called VUR, which you can read more about here if you'd like to. He is still able to urinate, but some of the urine goes back up into the kidneys, then eventually comes back down into the bladder, and so on. I can understand how he had so many kidney and bladder infections now.

He said the info from Russia was helpful, but he'd like more recent test results. Because Sam was already catheterized, he thought he could pull a favor and get him in that same afternoon for one of the tests, called a VCUG. So amazing! I was with Sam during the test, and it was so hard. He was crying and screaming the WHOLE time. :-( They injected dye into his bladder through the catheter and then took x-rays of it as it got full. Then they removed the catheter and took pictures once he started to urinate. That was a great sight for this mommy! There are five grades of VUR, and the test showed that he appears to be grade four and/or five on both sides. So, this will require surgery to fix. (We were expecting that, but I think he was worried about how we'd react to the news.)

The doctor told us that they never catheterize infants for this condition at their clinic. They use other methods to control the symptoms, and then eventually do surgery if needed (which we know we will). So, he warned us that since the catheter had been removed, there was a good chance some bacteria would be "stirred up" and he'd get a fever. He wasn't kidding. It was up to 103 last night, and was just at 104 before I put him to bed tonight. Please pray that God will heal him and break this fever tonight. Otherwise, we're heading to the pediatrician tomorrow. He is sleeping fine and still happy, but obviously a little more chill and quiet than usual. He's a trooper. The doc said this is probably why they kept the catheter in in Russia--to avoid these continual infections. Makes sense to me--I'd love to be avoiding this one right now!

There are two more tests he needs that can be done here in Gainesville. One is similar to the VCUG he already had, but a different fluid is used. It's called an RNC. The other one is a renal (kidney) ultrasound. We were expecting to have to drive to Jax for all of the tests, so this is a huge blessing. Once we have those results (hopefully within a week), we'll bring them with us to Jax and meet with the doc there to discuss them and talk about surgery. We're hopeful that will be relatively soon.

So, that's the update. A summary of prayer requests: for this current fever to break, for the other two tests to be scheduled quickly, for clear steps to take next when discussing with the urologist, and for a quick surgery date. Thank you for walking beside us on behalf of our precious son!