Monday, July 02, 2012

Talked to the Urologist Today

Talked with Jack's urologist today regarding the CT from last week.  Two things are at issue:

(1) a new stone is forming in the kidney and it's already 1.5-2cm in size.  This stone wasn't seen on the last x-ray that was taken the end of May, but one month later and it appears on the CT.  The urologist said he talked with the nephrologist and the plan is to have a 24 hour urine test done, determine the composition of the urine and treat whatever is causing the stone to develop.  In addition, Jack will need yet another lithotripsy to deal with the new stone.  I don't know when that will be.  According to the urologist, there is no hydronephrosis (swelling of the kidney due to back up of urine), so, there is no stone blocking anything and the stone isn't likely the source of Jack's "episodes".

(2) Jack is backed up - literally.  He is impacted with stool in a large section of his bowel.  The urologist said that you can't even see any air pockets it's so compacted.  I'm guessing this is the source of Jack's pain.  Despite my pleas, we can't get in to see a GI doc until the first of August. I would think my pediatrician could make a call and get us in sooner, but - to date, he hasn't. His suggestion has been to go to the ER.  Easy for him to say.  The urologist is going to call the pediatrician tomorrow and get his thoughts. This weekend, we tried everything to try and get things moving and were not successful.  I even contemplated a trip to the ER - it was that bad at one point. (had Jack dressed and ready to go.)  Then, I remembered it was July 1st -- the absolute worst day to be anywhere near a teaching hospital! (for those who don't know, it's the beginning of the academic year in the medical world and it's when all the new interns and residents start).  The real reason I didn't take him in was because he eventually got back to baseline and was fine the rest of the day.  I'm not certain we won't end up in the hospital (or at least in the ER) to get this issue resolved.  I should know more tomorrow.

Poor Jack.  The kid has not felt well for months.

Tomorrow we go see an oral surgeon at the Mayo Clinic (in Scottsdale, AZ not Rochester, MN) because Jack has an impacted tooth that must be dealt with.  I'm pretty sure it's not causing him any pain right now, it just showed up on the x-ray a year ago and Jack's dentist said it needs to be dealt with now before he goes back under to have his teeth cleaned.  This oral surgeon is an MD/DDS and he is part of the cranio-facial team.  While Jack doesn't have a cranio-facial condition, he does have jaw contractures and can't open his mouth, so I know this surgeon will understand Jack's limitations and won't break his jaw trying to extract the tooth (well, that's the hope anyway). We will likely be adding an oral surgery to Jack's schedule in the near future as well.

I honestly don't have a clue as to when Jack will be back to 100%, if ever.  But, despite everything he has to deal with, Jack still manages to smile when he's not hurting and if he can keep on smiling, well ... I guess I have to at least try to do the same.

The kid is killing me .... but, I love him to the moon and back, so I'll go to the moon and back to make sure he is taken care of.




5 comments:

Susan said...

Poor guy! What a tough time he's been having. I'm sorry Ann. I hope it all works out. I've heard that sometimes what seems like diarrhea is actually caused by an impaction. So perhaps that explains what you thought was c-diff. It would be nice this turned out to be the cause of his pain. Maybe you might want to try adding some fruits to his formula? If you ever want to talk it over shoot me and e-mail with your phone # and I'll give you a call. I hope he's feeling better soon. Hugs.

Clara said...

Ann, I just wish I could hug you, or at least be there. Jack is such a resilient kiddo, still smiling even though he's in pain! Hopefully they find the source of whatever is causing the kidney stone. You're such an amazing mom!

Anonymous said...

I am praying Jack gets back to 100 percent. I wish I could help in some way.

Hugs,
Sandra

Christy said...

Oh Ann. When is he going to catch a break for crying out loud? Or you, for that matter? Crazy! Your medical schedule is starting to sound eerily similar to mine! Okay, maybe worse even! Geez! I cannot believe that they cannot get him in to see the doc sooner about his bowel situation!!! Isn't that like an emergency?! I really hope that's been the source of pain, too, and that you can get it all taken care of.

Big hugs and drinks from me, my friend. Much love to you and Jack! xoxo

Kate Davena said...

Poor child! Dealing with stones is hard enough, but having to deal with two conditions at the same time for days must’ve been quite excruciating. Hopefully, the urologist was able to get him the treatment he needed immediately after the testing, so at least he could alleviate one of his problems, and maybe help lead the way in removing the other. Anyway, I hope you guys are doing well. Take care!

Kate Davena | Dr. Gabal, M.D.