DISCLAIMER:
First picture is a little graphic.
(you've been warned)
This is Ben's diaper last week. It contains blood (mostly dried) and green drainage from his foley site. It was a LOT alarming to find. I took a picture to send to the doctor since we are 90 minutes away and it's not convenient to jump in the car and drive up there. He ordered a kidney and bladder ultrasound for today to make sure Ben doesn't have any bladder stones and to make sure the kidneys are functioning okay.
I snuck a picture in during his kidney ultrasound. It was LONG and BORING because there was a resident radiologist in training and Ben is a difficult kid to scan because his kidneys are tucked up high behind his ribcage. 
Below is Ben with all the goop on his side...they kept changing the ultrasound probe from adult to pediatric and back again because they were having a hard time getting a good picture. Good thing he is so patient.
We spent a total of 9 hours on the road today. WHEW! Long day. His x-ray did not look so good. His left lung is showing collapse. I think his pulmonologist is going to be mad at me when she calls tomorrow with the results. (my PICU peeps gave me a sneak peek today) His PCP ordered some blood work to see if we can find the reason for his swelling. All looks normal. I'm happy but frustrated. I can't figure it out. Don't know if we ever will. The urologist says his bladder and kidneys look okay, not great, but not bad either. He's not sure why he's been having problems lately but wants us to continue what we are doing and he will be seeing us more frequently to monitor things.
This is what Ben looks like tonight. He still has a few bandages left that I need to take off from his blood work.. It's 85 degrees today so I stripped off his jeans to cool him down. I'm sure he is wiped because half way home the vent battery died. I wasn't anticipating being gone that long. 45 minutes he had no support. His sats stayed up but I know it wasn't helping that poor lung of his. He always gets tired when he's off the vent because he has to work much harder. I've been taking him off for short periods of time recently but I think I need to stop seeing how his x-ray looked. It makes me sad. I was really hoping to start weaning him way down now that he's feeling better.
10 comments:
Ben you sure are a tough guy, looks like you did a great job at your appts.
Becky lots of hugs and prayers that the lung will open back up and not cause a problem.
I scrolled RAPIDLY past that first picture. Thanks for the warning.
I love that Ben.
xo
Oh Ben, you look completely tuckered out in that bottom photo!
I'm sorry to hear about his lung, and that you won't be able to take him off the vent anymore. For now at least ... I hope that you can soon enough.
As for the diaper, WOW! That would freak me out for sure. I hope they can figure out what's causing that. He has a foley catheter in all the time? You said foley site, so I don't know what that means.
I hope that Ben feels better and that you get some rest tonite!
Yes...he has a foley cathetar in all the time. I actually was thinking of you because I know Peanut deals with similar issues - but what does she have again?
Ben, you do look tired and a little hot! Long and hot days will do that to you!
Sorry about the lung showing signs of collapse! This is not good! I'll be praying and thinking of you guys! Love and Hugs!!!
Maybe a summer full of funshine, sunshine, and loud cousins will be just what he needs!
Ugh what a dreadfully long day. I hope things get better so you don't end up back in PICU!
So if the robinol doesn't work do you think we can try the other you use? Or does it have side effects because its for the bladder?
Aw, what a sweet toasty boy. He is so patient even when he has a long day.... I'm sorry you are sad about the vent... I sure love you!!!
Peanut has a Mitrofanoff. We were told that indwelling foleys aren't recommended for long-term use because of the risk of infection. How often do you change it out? What is the reason for Ben to be catheterized all the time, is it a neurogenic bladder? Perhaps he would be better (and more comfortably) served by a vesicostomy or Mitrofanoff? Having a catheter in all the time must not feel good. :(
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