Where to begin...well it's been a couple of weeks since the last post and part of me is struggling with what to say. But thank goodness life is never dull around here and constantly offers up new posting ideas daily. Today's gift comes in the form of a bladder infection/UTI for Leo. We went to see his kidney doctor on Thursday for what I thought would be routine follow-up. After which we could close the book on the kidney doctor. Yep, I was sure we'd be all done with that. Fail.
She took blood and urine samples and he had an ultrasound on his kidneys to see how things looked. The ultrasound looked fine, nothing different than the last time. But on Friday I got a rather panicked call from the nurse about his urine culture. Seems he had an infection but they weren't sure if the sample from the previous day was contaminated or what. So back to the hospital we went for a cathoter for Leo. Ouch. Five minutes later results - yes an infection is confirmed and we'll call you when we know what the exact bacteria is. In the meantime, here are some antibiotics to start him on. Sunday afternoon a call from the doctor (this can't be good, calling on a Sunday??) to confirm that it's a pretty serious bacteria that is apparently resistent to pretty much every antibiotic out there. Except for IV ones! Oh, and one other oral one that none of the pharmacies near our home seem to carry. So she'll fax it to the Swedish Pharmacy. Oh they're closed for the day already? Ok, will pick it up in the morning. Amidst all of this Leo is fine. He doesn't have a fever, he's eating, sleeping, in a good mood - you wouldn't know he had anything at all.
Monday morning, 7 a.m. call the pharmacy to check on status of medication - their computers are down! Fail. Wait two hours, prescription filled and Leo is now on the proper medication. And hopefully the bacteria won't decide to morph into a new strain and become resistent to this because methinks we'd be in for a hospital stay if that were the case. Not going there.
So the story is that due to his preemie-ness, his little boy parts (the main part) is, well, how to put this - the turtle is hiding in its shell just a bit too much. And the shell will eventually be removed, but that won't be until 9 months, because of his preemie-ness. With the turtle out of its shell the risk of UTI will go down dramatically but until then this is something that can happen so he'll likely be on antibiotics of some sort for a while. There's also a test they do for a form of reflux that preemies (and regular kids/adults for that matter) can get whereby the pee doesn't just drain on out, but some of it backs up into the bladder and then sits there and, you guessed it, grows bacteria. So they'll be doing this test soon, if he has the reflux problem there's a procedure to fix it. Sigh. But for now we're just trying to get rid of nasty bacteria and move on from there.
Today's fun with doctors is a follow-up with his GI/Liver doc. I can't wait to see what this day brings!
On the positive tip, Leo's calcium and sodium levels in his bones and blood are normal so he's now off of the calcium carbonate and sodium phosphate. So of his original six medications he was on when he left the hospital, he's still only on two of them and conceivably could be off of one of those two today if the GI doc gives the green light. Hooray for progress.
Grandma's also heading back to Spokane today. It's been amazingly helpful to have an extra pair of hands around here. And she has so loved spending time with Leo. We've loved having her and look forward to more visits. I am, however, looking forward to Jay commencing his stay-at-home-papa role today. He'll be home for the next month. Woot!
And, just because I love it so...here's a recent pic of the little man himself.
Oh Caitlin, I'm so sorry about this. Poor little guy. I'll keep my fingers crossed that the other tests come back just fine, and in the meantime I hope the antibiotics work wonders.
ReplyDeleteThanks so much for your kind words about my NY Times piece. It makes my day (week/month?) to know that something I've written touches another person, especially another preemie mom.
I look forward to keeping up with your story and Leo's progress.
Best,
Kate
Oh boy, that's an adorable picture! I'm sorry to hear about Leo's UTI and the whole medication mess. My grandson had this type of reflux/UTI issue and was on low-dose antbiotics for a year. He eventually outgrew the problem and hasn't had any related issues since - he will be 11 in October. Good news about the calcium and sodium levels. Yes, progress is being made, so hooray!
ReplyDeleteGod I love this picture! Thanks for posting. Just what I needed to see today :)
ReplyDelete~Kathryn