Friday, August 31, 2012

First nephrology appointment

The waiting is finally over and we had our first pediatric nephrology (kidney specialist) appointment yesterday. First, let me say I am thankful that I only have to drive 15 minutes to get there. Others in the waiting room had come from 1-2 hours away. Children's Hospital of Illinois is a great resource and to have it in our own back yard is an even bigger plus.

Adam is the easier to discuss so I will tackle him first. We were originally told that Adam had severe calcifications in his right kidney and that is incorrect. That makes me feel a little better, like my eyes weren't deceiving me, because I know his renal ultrasound looked nothing like Sara's. Adam's kidneys themselves are normal and formed properly. His ultrasound did reveal that he has some dilation in the collective system of his right kidney. It could be something or it could be nothing. Dr. Gordillo wants to rule out an obstruction, which is more common in boys. Next steps are labs for a urine analysis and blood work. If the urine analysis has abnormalities, we will go a step further and do more in-depth testing. They also need to schedule a procedure called a Mag 3 Scan where they will inject dye thru an IV and do something like a CT scan to take pictures of how the dye flows thru his kidneys. If it pools at that collection point then there is a blockage that would require surgery to correct. This is scheduled for September 4. Happy birthday to me!

When Sara was scheduled for her procedures I wasn't really worried about it. I knew she could handle it. But Adam is more tentative and skiddish. Things scare him more easily. Even tho he has a high tolerance for pain, he is more tender than Sara and my favorite snuggler! So I definitely have a concern about how this will go. I see a visit to the hospital with his favorite blankie at his side as part of the day!

Now on to my baby girl, which brings tears to my eyes to even say. Dr. Gordillo confirmed that Sara's calcifications are indeed kidney stones and she has 2 large ones in each kidney. He feels they were probably formed because of her UTI's. At this point they are not obstructed so it isn't urgent to do something with them. She will have a full blood work done, some urine analysis, as well as an in-depth 24 hour urine collection where we have to collect everything she pees during her waking hours in a 24 hour period and send it off to a lab. Hopefully the results will reveal more about the kidney stones and what they are made of so we can further determine a course of action.

At this point Shannon and I were thinking we would wait a few years and see if her kidney reflux got better, get rid of the stones, and then we would have everything behind us. I learned yesterday that is not how it is going to happen at all. Dr. Gordillo brought the news to the table that a portion of the inside of Sara's kidneys did not fully form, possibly in-utero. Her cortex (an inner layer of the kidney) is thinner and the differentiation is not well seen in the ultrasound. This puts her in the category of having chronic kidney disease that will require follow up with him every 3 months indefinitely.

Sara has enough kidney tissue for now and the goal is to take good care of what she has. We will be monitoring her blood pressure, her growth rate, and her urine output. Any abnormalities in those areas will indicate the kidney function is diminishing. As she grows, the kidneys have to filter more and work harder. There are some "sacs" inside her kidneys that do that filtering and as she grows, the sacs that are there will need to work harder. Some kids do fine with that and others don't so we will just have to keep up with the monitoring and see how her body reacts.

And so we wait. Again. Once these lab results and other tests are done, Dr. Gordillo will review them and contact us as to next steps.

If you are a praying family, pray simply that God heals it all.

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!

Peoria Zoo day

Recently a few MoMs from our twins group decided to meet at the zoo. It was one of those 100+ degree days so it was a little rough. We opted for the red wagon to get some shade and not end the time with totally cranky kids. Maybe 1 cranky mom from pulling from time to time but that is way better than 2 cranky kids AND 1 cranky mom!

We spent a little time at the petting zoo before the other MoMs arrived. Adam loves to pet horses. As you can see by Sara's presence nowhere in this photo, she doesn't share the same passion.


After the petting zoo, we found everything around that we could possibly climb on!

Then we headed inside. Who doesn't love the monkeys? Look closely. This is not a baseball bat leaning against the fence! It's his tail hanging on!

The lemurs are our favorite - they were hanging out all entwined.

Giant box turtles are cool. I love that they are standing on their very tip toes. This time next year, they won't have to!

What's not to love about a meerkat? This guy was just sitting against this rock having a staring contest with Sara.

After the indoor exhibits we decided we needed a snack. What better treat to enjoy on a hot day than a strawberry shortcake ice cream bar. I probably could have bought 1 for each of us.

Finally - the other twins! 3 sets to be exact, not all pictured of course. 11 kids among 4 families - now that's multiplication.

Sara wasn't too sure about these guys. They looked kind of funny and came right up to the glass, making her step back.

The Africa section, on the other hand, is totally awesome.

Adam loves the giraffes...

All in all it was a great time, until I didn't hear Adam saying "mom STOP!" He had hung his arm over the side of the wagon and got his thumb stuck in the wheel track. Then as I was pulling the wheel was rubbing the skin off his thumb. It had taken off quite a few layers. It's been 2 weeks now and he finally went without a bandaid this morning! Every time I would take it off to clean it, he would get this dramatic whiny voice "it hurts, it hurts, put another bandaid on, it hurts!" There was an entire week he complained he couldn't pull up his pants. Lord help us for any serious injuries down the road!

Thursday, August 9, 2012

Swim lessons

Originally I signed the kids up to take swim lessons two weeks ago. Then I looked at my calendar and realized it was a week that we went to Wildlife Prairie Park and we had eye appointments. Oops! So I rescheduled for this week. The only problem? It's been 100 degrees most of the summer...except this week! They barely make it thru the 30 minutes without needing a snuggle break from shivering so bad. Yesterday it even rained during swim lessons! They have been doing well trying new things, with a little coaxing...putting their face in and blowing bubbles, working with the kickboard, jumping in from the side. We tried jumping in off the diving board and the best I got was to drop them in with my hands but that's a start! They wouldn't go down the slide at all. I think it freaks them out that it is a covered tunnel slide. Hopefully the weather will warm next week and we can finish strong, enjoying the water without so much shivering!

Saturday, August 4, 2012

Sara's kidneys

Sara had a urinary infection last fall. The pediatrician told us that he would monitor her but if she had another one he would need to send her for further testing.

On July 18, I trusted my gut and showed up at the pediatrician's office when they opened without an appointment. Turned out I was right. The quick test revealed blood in her urine and white cells. Our regular doctor was not there that day so we saw Dr. Harvey. She indicated she was very concerned and felt like we needed to do some follow up testing right away. Toddlers don't typically get urinary infections. It could be nothing or it could be something that leads to kidney failure. They coordinated with the hospital to schedule an ultrasound of Sara's kidneys, as well as a voiding cystourethrogram (VCUG). The VCUG is a procedure where they insert a catheter into her urethra and fill her bladder with a liquid contrast and then take x-rays throughout the process. They are looking for reflux, or the flow of urine back up into the ureter, or possibly into the kidneys.

After making the appointment for the procedures, Shannon and I began to feel that we should opt for sedation which would make Sara loopy and help erase her memory of the experience, which could be traumatizing. So we rescheduled the appointment for yesterday.

Sara did fantastic for the ultrasound. She laid very still for the long list of photos the technician had to capture for each kidney. I started feeling like something was wrong, though, when I noticed she kept taking extra photos of some white spots (some were white lines) and then measuring them. I chose not to ask the technician because I figured she couldn't tell me anyway.

After the ultrasound we walked down to a little room where Sara got her own big bed and started meeting some new people. I think she was a little overwhelmed by the process but I had already talked to her about what was going to happen. The sedation nurse (Mary) took some vitals, the doctor came in to verify the dose, and a Child Life Specialist stopped in at our request. She had a bear that she used to explain to Sara where her bladder was and that they were going to put a straw where she goes potty, take some pictures, and then she would need to go potty in a travel potty on the bed. We read some books together, and she thought it was pretty neat that they wrapped a bandaid around her finger and turned out the lights so she could see it glowing red (to measure her pulse ox). Finally it was time for the liquid sedation. We waited and waited. Just when the nurse said she might have to give her more Sara finally said she felt dizzy. They transferred her to a transport bed and off we all went down the hall to x-ray.

They showed her all the cool fish hanging from the ceiling and changed her out of her dress and into a hospital gown. The Child Life Specialist got out her iPad and loaded an alphabet game and held it on Sara's chest for a distraction. The nurse kept warning us that even though Sara was sedated, she would probably still fuss when the catheter went in because it would be uncomfortable. They were working on getting Shannon's and my x-ray vest on when we heard the nurse say "You're done already?" They had the catheter in and Sara didn't even react! She did such an awesome job for the test and just enjoyed her iPad game. We could see her bladder filling with liquid. When it came time to pee in the bed pan, she wasn't interested and just kept playing her game. The x-ray tech said that was okay because he could already see the reflux on the screen and pointed it out to us. She went potty on the toilet, they took a few more pictures, got her dressed, and we went back to the room to wait for some of the sedation to wear off. Everyone in the room kept saying again and again how smooth everything went and it was the best procedure they can remember having. So proud of my little girl!

While we were waiting, Mary got a phone call and the doctor told her he was making arrangements for us to be seen by a pediatric urologist a few hours later, Dr. Rhee. That was another indication that the news wasn't positive. Still a little woozy from the sedation, they released us and we met Shannon's parents and Adam for lunch. Sara was quite upset that we were going for lunch and insisted that she have breakfast. I think it was because she hadn't had breakfast that day and her memory was off as to what time it was. So we picked Bob Evans so she could have the waffle she requested.

It was a little surreal being at Dr. Rhee's office. I don't know what I was expecting but to see a room full of children, most older than Sara, who needed his specialized services was a reminder that there is a whole world that people live thru and we go about our day not even realizing that it exists. Kind of like when we were in the NICU.

The first thing Dr. Rhee discussed with us was the reflux. They grade the severity on a scale of 1-5, with 5 being the worst. He has rated Sara's reflux as a grade 4. Because of her age, he prefers to monitor it for 1-2 years to see if it will correct itself. If it doesn't, it would require surgery. Each infection that the kidney suffers becomes more and more serious. After the 1st infection, no damage, after the 2nd infection (which this was), minimal damage, after the 3rd infection, severe damage. So the goal is to avoid any further infections. This is a time of rapid growth for Sara and he doesn't want anything to happen that would impede her kidney growth and function. She will be on a daily low dose of antibiotics until further notice. The first kind he chose would be completely expelled by the body and there would be a minimal chance of building up an immunity to it. I asked what the long-term effects are of being on an antibiotic and he said "better than kidney failure." I was very in favor of that until the pharmacy told me about the $460/month price tag! So we switched to something that she was on most recently which is $50 for a 14 day supply. He also wants to see her back in 3 months for another ultrasound and then she will have another VCUG in 1 year to check on the progress.

The second thing Dr. Rhee discussed was that she has severe calcium deposits on her kidneys - kidney stones. Those were the white spots I saw the ultrasound tech taking pictures of and measuring. They may have been caused by the diuretics possibly given in the NICU to help her kidneys function. I will probably check in with her NICU doctors to even see if it is true that they gave her this kind of medication. The kidney stones may be contributing to the reflux. It is a little difficult to view some of the photos of the kidneys because there are so many stones blocking the image. Sara has absolutely no pain from these. Dr. Rhee is referring us to a pediatric nephrologist to see if they can tell us what may have caused them and if there is anything we can do about them. He wants that appointment in the next 1-2 weeks. Apparently they could be embedded in the deep tissue of the kidneys and be very hard to remove. Also, because she is a twin, he is suggesting that Adam gets an ultrasound to see if he might have kidney stones, as well.

I'm not sure what I was expecting to come from Sara's procedures - I think I was just waiting to see the results rather than playing a what if game. This is certainly a path I didn't think we would be traveling. At this point, I have more questions that need answers and phone calls to the pediatrician to keep them informed, schedule the appointment with the nephrologist, call the NICU, and possibly schedule Adam's ultrasound.

I'm still processing all the emotions. I've been careful to stay very positive for Sara so as not to scare her and we are intentional about not discussing it in front of her.

In the meantime, we'll pray for complete healing.