Thursday, August 16, 2012

Now Adam's kidneys

If you remember from Sara's post about her kidneys, the urologist suggested we have a renal ultrasound for Adam to see if he has the same calcifications in his kidneys (since they are twins and both had NICU time.) So Adam and I ventured to OSF on Tuesday together. He kept asking "Is it going to hurt?" and I would say "Not at all." It was really nice having time with just the two of us. We stood at the window and watched the cranes working on the new construction before heading down to radiology. I was thankful Adam had packed a big bag of Matchbox cars. He was a little timid in the exam room while we waited so I turned the bed into a race car ramp and slid the pillow down on the bed, covered it with the sheet, and we had races to see which car was the fastest. We even enjoyed lunch together at a little sandwich shop before heading home. We need to plan more time individually with the kids - I think everyone likes it!

I was watching closely on the screen to see if I saw anything like what was on Sara's and got no indication that it was remotely similar. So I walked out of there feeling pretty good. A day went by and no word from the pediatrician. 2 days went by and still no word. I was confident they weren't calling because they didn't see anything. I finally checked in with them and she said the doctor had been out on his day off and then was sick for a day so I just left a message to have him call me. A few hours later, the nurse called and a different doctor read the results...Adam has severe calcifications on his right kidney, as well. What?! I was totally in shock. It really knocked the wind out of me and wasn't what I was expecting at all. They wanted him to see the kidney specialist, as well.

I had just finally gotten Sara's referral and made her appointment so I had to call back and ask if I could get them both in at the same time. Unfortunately, they had to move the appointment back a week to find a slot for enough time. August 30 is our next big day.

I was able to talk with a NICU doctor, though, who I respect very much. She was kind enough to review both of the kids' discharge files and said there is nothing in there to indicate that this would be due to the type of medication the urologist was saying caused this. Neither of the kids had chronic lung disease or major heart trouble. I am so thankful I checked in with her and she was willing to do that for me, instead of another doctor removed from their medical history making assumptions. We would like to get to the root of the issue and make sure we take appropriate corrective measures. We will be taking extensive notes regarding the kids' diet to the kidney appointment in case they think it might be linked to their food intake.

Lots of unanswered questions right now. But I feel like we are back on NICU mode - no freaking out, one day at a time, only make decisions based on the information provided, and do not treat the kids as if they are any different. They are how they are today because we have challenged them every step of the way, rather than treating them like babies who can't do things for themselves. It's life as usual in our household. Neither of them even know that something is going on. That's not to say I don't have my emotional moments, but I trust that God was in control when they were 2 1/2 lbs and He's in control now...way more than I am!

3 comments:

Heather said...

Oh JoLynn. I know this is scary and that it's always in the back of your mind. I truly hope that you find some peace and get encouraging news at your upcoming appointment.

Jenny said...

Good luck and keep us posted. Owen loves to watch the cranes work while waiting for appt's too:)

Anonymous said...

Hey JoLynn! Since moving out to the country I have not had time to get on the computer to just "read". Today, I took the time and caught up on your blog. So fun to read! The kids look great and you still write with emotion, humor and love. We will be praying for Sara and Adam's kidney's!
Pam