rocks in the bladder or something else?

[Cheryl Biermann]

So you know Nathan had passed a very large kidney stone and ultra sound had found two more.  Today they did a follow up on those two and found something roughly the same size as the two stones together, perfectly round in the bladder.  They are not sure what it is, as now it looks like there may be blood flow to the mystery globe.  

Our wonderful urinologist just passed away, and they have not found a replacement yet, but his student has moved to another area hospital which is trying to add peds to thier services and he is able to see us Mon after our therapy sessions.  Monday seems like a long way off.

[Linda Burke]

Just checking in to see how Monday went....Sorry to hear about the loss of your doctor, many of our aHUS families have a special place in their hearts for the wonderful medical folk who have shone a light of hope and support on our aHUS journey.

Hope the news is good on the mystery globe - Nathan's overdue for a break of sunshine!

[Cheryl Biermann]

Yes, it's a scope. I'm  only okay with it because if you dawdle with these appointments, then they can't get you in, so all in one day's okay with both of us when it's out of the way, no more missed school or "hanging out" time.  Dr. Palagori scheduled the scope before even meeting with us, just on the basis of Dr. Belsha's urgency, I think, so in that way we're lucky.  But Thanks, Donna, it's not something either of us want to repeat!  Why is it that the best hospitals are always in congested, high traffic areas anyway?

[Donna Kolp]

Wow, talk about patience. You certainly have it!!!  Nathan is a trooper, and to be honest, I would not of been. Is he having a Bladder scope?  I am sure the 29th seems forever away. :( We will continue to keep Nathan in our prayers!

 

[Cheryl Biermann]

Well, today's appointment only confirms we have another cliff hanger, wait until January 29 to know what's happening for sure.  Nathan deserves a pat on the back today, 3 hours of therapy, in the north side of town, lunch in the car, urology appointment at another hospital accross town on the west side of town and finally echo on the east side of town.  No complaining until he found out that Tue. he has to go north to his pediatrician for a clean bill of health before the surgery.  

[Cheryl Biermann]

We have an appontment now for the scope on Jan. 29th, no time yet.  I think it's making Dr. B. nervous that it's not at Cardinal Glennon and falls on the same day as his infusion.  He's called four times between yesterday and today:)  He wants to see what Dr. Palagori says Mon. and check things with the new home health co.  It is supposed to be outpatient and I guess we're all a little gun shy about mixing the Soliris too soon.  Tyanks for the good wishes, update on Mon. 

[sabrina kiernan]

Oh Cheryl, hope Mon comes fast for you, nail biting and anxious time.  Keep us updated, prayers and best best wishes being sent your way.  Stress!!! Eh! Our best wishes.

[Phyllis Ann Talbot]

ughhh - just when you think you can take a breath - our kids (and adults) just like to keep us on our toes!  As always in our thoughts and prayers - let us know!

[Cheryl Biermann]

Thanks Donna, you brought up something I didn't know, which of course is a lot!  So far so good, on the neurotic mom syndrome...I haven't snapped at anyone yet for wishing me a nice day, or launched into a long tirade about why it is not nice!  Seriously, we do really appreciate the advice and prayers.  We'll keep everyone posted, maybe this is a non event too?  It could be and that is what I'm hoping for.

[Donna Kolp]

Cheryl,

Seems someone likes to keep you on your toes....I am sure you have gone from A to Z in 60 seconds. Some peace of mind, those ultrasounds and CT scans can present some different things. When Jonathan had his CT scan AND ultrasound on his kidney's back in 2010, we were told that blood can sometimes show up as masses. Fortunately, this was the case with Jonathan, AFTER they did the bilateral nephrectomy. You know, Nathan is ALWAYS in our prayers, and I can tell you to try and not worry about this until Monday, but.....I know you will.

Donna