Thursday, November 29, 2012

New scarves

I have been looking for scarves for the kids for a while. They either seem too bulky or way too expensive. Last week we were at JoAnn Fabric looking for buttons and score! Buy your own fabric and make the scarf yourself! Why didn't I think of that? $1.65 and the kids love them. Best. Idea. Ever. Or at least in a while!

Wednesday, November 21, 2012

Boston Bound!

What a week it has been. My last post entitled Boston Bound was followed by a "?". If you notice this one, it is followed by an "!".
It was one week ago today that I spoke with our urologist about his discussion with his colleague in Boston, Dr. Nguyen (pronounced "Wen"). After reviewing Sara's CD of information, Dr. Nguyen feels like it would be tight, but there would be enough room to perform surgery option A and enter robotically thru the base of the kidney where the ureter connects. He has prior experience and would be willing to perform the lengthy 4 hour surgery on both kidneys at one time. If we chose to stay in Peoria, our urologist is comfortable with doing just 1 kidney at a time, which would mean additional sedations. Boston would require 2 sedations - 1 for the surgery and 1 for the removal of both stints, which could be done after we returned to Peoria. Peoria would require 3 sedations (possibly 4) - 1 for the 1st surgery and if that went well, a 2nd sedation a few weeks later to remove the 1st stint and perform the 2nd surgery, then a 3rd sedation a few weeks after that to remove the 2nd stint.

I was thankful the door for surgical options had re-opened...but the decision we were faced with felt unbelievably difficult. Stay home where it's comfortable and familiar for 2 surgeries? Travel across the country and leave my son behind for 1 surgery? Is 1 surgery more risky in case something goes wrong and both kidneys are left damaged or possibly in failure? The list of questions was long. We gradually began working thru them and allowing ourselves to be led.

Our urologist in Peoria, Dr. Rhee, was very comfortable with us exploring options. In the end, he wants us to be comfortable with our decision and have no regrets.

Thursday we headed to the nephrologist. He reviewed Sara's labwork with me. Her kidneys are struggling but they are keeping up. His concern is the high levels of protein in her urine. Some of the sacs inside her kidneys are damaged or missing and the others are working harder to make up for it. That increased pressure is causing protein to spill over from the sacs and leak into her urine. The protein is another thing that can damage her kidneys. He started her on a low dose of blood pressure medication to reduce the pressure in the sacs and keep the protein from spilling over. We go back in 3 weeks for more blood work to make sure it is adjusting things accordingly and not causing other unwanted side effects.

Friday last week Shannon called Boston to speak with Dr. Nguyen and try to get answers to some of our questions. Unfortunately, both the doctor and his assistant were out of the office and they would return our call Monday or Tuesday. At least he was able to get Sara officially in their system so a conversation can be tracked.

Monday Shannon initiated another phone call. This time someone told him they didn't have enough of Sara's records. They wanted everything, not just imaging records. OSF came thru and faxed it immediately to Boston upon his phone request.

Tuesday morning (yesterday) at 8am Shannon got a phone call from Dr. Nguyen! He was willing to move forward with surgery, if we chose, without meeting with us for a consultation. He felt 1 surgery was the way to go and that is what they choose for children with other kidney issues. We would need to meet with the anesthesiologist the day before the surgery, then the day for surgery, 1-2 days in the hospital, and stay in the area about 3 days to make sure there were no complications before going home. The foley bag would be removed after 24 hours and the stints would come out in Peoria 1-2 weeks after the surgery. He wanted one more scan - a DMSA that would specifically show him how well the kidneys are functioning.

After talking to Dr. Nguyen on the phone, we both feel certain this is the best path for Sara. I am feeling thankful for that feeling of certainty.

We headed to the hospital today for the 10am injection of radioactive isotopes. My little rock star did awesome with the needle poke. I think the band tightened so much her arm was half the size was the worst part. They snapped a few initial photos and then we were on our way until needing to return at 2pm. It was so cute seeing Adam kiss the injection point on her arm to make her feel better!

We always seem to find something interesting during our hospital visits. This time was no exception!

We spent a few hours shopping for light fixtures - how exciting - and then had lunch at Avanti's. Then it was back to the hospital for more "pictures". And more fun distractions.

It was nice to see a familiar face when the doors opened - Nonnie did Adam's Mag3 Scan and she was going to finish Sara's DMSA scan. Sara got comfortable on the table and Nonnie told us she thought Sara would do such a good job laying still that she would be able to get a full 360 degree scan, which is highly unusual for 3 year olds.

As Sara lay on the table, the imaging camera rotated all the way around her for 10 minutes.

Below is a good snapshot of Sara's kidneys and how they are doing.

This is similar to Adam's Mag3 picture. The very light little dots are Sara's torso, arm, and her legs. The white is her kidneys. The isotope sticks to the functioning parts of her kidneys so where there are lighter or gray spots, that is where there is damage from her urinary tract infections. Because of her kidney reflux, the infection has flowed upstream into her kidneys. Normal kidneys would be perfectly shaped and completely filled in white. You can see there is a large part damaged in the top right corner of the right kidney. Nonnie also indicated the lighter spots in the center of both kidneys is also damage. We are anxious to hear the official report from the doctor.

Below is a comparative picture. Keep in mind that this is NOT Sara and the coloring is opposite, with black being good function. I just wanted to give you an idea of what a normal shape should look like. The kidney on the right is a normally functioning kidney. The left shows damage.

We will be sending the CD of the images to Dr. Nguyen for his review. At this point the only available surgery date in Boston is December 20.  Next would be January 11 or 17. We will talk thru those options with him to see what his sense of urgency is.

This is the first real picture we have seen of what is going on inside our baby girl. To us, she is a beautiful blonde-haired, blue-eyed little princess who loves to dance and be a mommy to anything close by that would qualify as her baby. She is very observant, like me, always watching what is going on around her. Her laugh is infectious. She loves to go high, go fast, spin around. And she is strong. Man, she is strong. It takes my breath away for a moment to see the picture of what isn't perfect inside.

We keep walking down the path, knowing that she is in good hands here on earth. And I rest in knowing that God already knows. Everything.

Tuesday, November 13, 2012

Blankie's new home

Most children have a favorite of something that they latch on to. Sara really doesn't have one, other than her thumb lately. Some nights she wants nothing in her bed, including her pillow, and some nights her head is surrounded.

Adam, on the other hand, is best friends with Blankie. You see, blankie has been around a long time now. This is the first picture I can find of Adam with his beloved friend in March, 2010. He was 11 months old. You can't necessarily tell from that photo but he is a small blue blanket with the head of a dog attached. I thought about naming him Doggie but at that age, I thought the kids would get confused because it wasn't really a panting, licking, barking, tail-wagging dog. So Blankie stuck.

At one point I found a duplicate at our semi-annual Peoria Mothers of Twins Club giant sale. It helps us keep one clean and one as backup.

I do have to be careful, though. Adam has been known to search thru a dirty clothes basket to find the one waiting to be washed. Or he will find the clean one in the laundry room. For a while, he decided he needed to sleep with both of them.

We have also had times where he steals someone else's blankie. You can see hints of the pink one, which is supposed to be Sara's, hiding behind the blue one. Sara doesn't mind so what's the big deal, right?

Sometimes you just need him when you are rocking and have a runny nose from a cold.

Sometimes you need an extra friend when you discover someone bought a new baby gate and you can't quite get where you want to go.

He always holds Blankie the same - grab the tag in the left hand, insert thumb.

Even when we went thru a season of having to spend the night together on the couch sometimes, we had to make room for Blankie.

He has traveled many miles with us, even all the way to Arkansas to meet Great Aunt Ann! You can see that Blankie is very photogenic. Heaven help me on the times I forgot Blankie during a key nap time. Like when I was with my Aunt Robyn doing some shopping and Adam had a total meltdown so she bought him this absolutely adorable Monkey Blankie that to this day the kids can't look at him without saying "awww".

Blankie even got the privilege of seeing our Christmas tree lit up on Christmas morning.

He got to snuggle in my bed for the first shots on my new camera last Christmas. This is one of the few shots that I have of Adam scratching Blankie. I have no idea why but apparently Blankie likes it. So it's hold the tag, suck the thumb, and scratch. Thankfully, the only time Adam sucks his thumb is during nap or bedtime when he has Blankie.

Of course he has to travel to St. Louis when you celebrate turning the big 3.0!

How would he have survived Aunt Robyn's Great Septic Backup of 2012 without Blankie?

 Of course spare Blankie was there waiting for Adam to be surprised when his crib was converted to a toddler bed.

Regular Blankie just had to experience the very first slide down the new swing set!

He has definitely been a comforter as Adam has experienced some new medical issues this year.

Wow Blankie has really been there thru thick and thin with Adam. No wonder they are best friends. Honestly, I have to admit we have used it as a threatening tool at times and it works effectively. But lately we have noticed an issue - possibly an unhealthy attachment to Blankie. The rule was that Blankie always stayed in bed when naptime or bedtime was done. But now the temptation of a toddler bed's easy access made it so difficult to not just sneak in and snuggle with him for a bit in the middle of the day. Or we would find Adam hiding behind the rocking chair in the corner, just he and Blankie having a moment.

Rather than taking Blankie away completely I decided to remove the temptation that he struggled with during the day. I found a spare shoe box and we made Blankie a "home". Adam loved it! We got out the craft supplies and I let him decorate it however he wanted.

He took the job very seriously.

In the end, I think Adam was very pleased and proud of building Blankie's new home. And Blankie liked the way it turned out, too!

Now when Adam gets up from nap and bedtime, Blankie goes in his home and then is placed on the top of Adam's wardrobe cabinet that is about 7' tall. Some days it takes longer than others to get him in there and he needs to get an extra scratch, kiss, and squish hug (complete with grunting noise due to the sheer force of the hug). And sometimes Blankie requests a friend to keep him company in his home or a blanket to cover up with.

So far this has been extremely effective. A few times, we have found Adam taking his green bathroom stool in his bedroom, hefting it onto his bed, and standing on it to get Blankie down. He's smart - I gotta give him that! I just couldn't completely take away the one thing that helps him feel so safe and secure. I think we have come up with a good alternative!

Monday, November 12, 2012

Trunk or Treat 2012

I had purchased the kids' Halloween costumes last spring and was anxiously awaiting the holiday. Actually, not Halloween, but our annual twins' group Trunk or Treat. It's our best opportunity for trick or treating and the only thing we have participated in so far. When it comes to the actual holiday, the lots in our neighborhood average 2 acres and that is a lot of walking for little legs. Plus, I think since we have lived in this house 10 years we have only had 3 knocks on our door at Halloween!

What were the costumes I found? M&Ms! A blue and a yellow, complete with felt shoe spats to look like boots!

Now we are passionate about our trunk decorating...or I should probably say I am but Shannon was actually pretty into it this year. Our first year Adam was a lion and Sara was a tiger so we decorated our trunk as a jungle. Last year Sara was a prairie girl and Adam was a cowboy so we decorated with a campfire. With M&M costumes this year, I had the idea to have a movie theater candy display case. I thought we were ahead of the game because we started planning the night before instead of the day of like past years. We stopped by a local movie theater and they donated 3 movie posters that I planned on creating some kind of backdrop with. Shannon had an idea for building the shelves.

Saturday we headed to Grandma's new house to work on the project because Shannon's tools were at our friend's log cabin home and another friend had his tools at my mom's working on a remodeling project. Did you follow all that? Tick tock, tick tock. Lunchtime came and I had brought a pizza to cook. We weren't even close to finishing so I asked mom to take the kids home for a nap while Shannon and I finished. Luckily both our vehicles were there. 2:00 and I am done with my part. Trunk or Treat starts at 4. Problem is that I measured wrong so it didn't fit exactly how I wanted but it would still work. Tick tock, tick tock. 2:45. I still need to get home, shower, get the kids ready...3:10 and we get in the car which...won't start! Thankfully mom's car was in the garage and we could jump start ours. We got home at 3:20. I showered while the kids got into costume. 3:45 and we are out the door. Except we get 5 minutes down the road and realize we forgot the pumpkin baskets to put candy in. 4:15 and we finally arrive. Thankfully we weren't the last to arrive, almost though.

Sadly, no awards were won this year. Because we were late, we didn't even know we had to have a number attached to our vehicle for voting! Mark this down - next year we are preparing it the weekend before!

The kids had a ton of fun, though, and that's all that matters.

Check it out - more M&Ms!


Friday, November 9, 2012

Boston Bound?

Last week Sara had her 3 month routine follow up ultrasound, blood work, and urinalysis.

Once again, Sara's actual draw of the bloodwork was a breeze. The nurse asked if I needed someone to come in to help hold her arm down. Ummm, no? Sure enough, Sara sat on my lap again still as could be and didn't wince or let out even a whimper when the needle went in. She even had to poke around a little to find the vein. So proud of my brave girl!  

The nurse at the kidney doctor's office called regarding Sara's labs. The bloodwork doesn't look great. It's not the worst it could be and it's pretty similar to her last labwork 2 months ago. However, there continues to be protein in her urine and he is very concerned about that. The doctor would like to see us next week instead of in December like he had planned. When I originally posted about Sara being diagnosed with chronic kidney disease, I listed some factors that the doctor would monitor every 3 months as indicators of kidney function--her blood pressure, her growth rate, and protein in her urine. High blood pressure indicates the kidneys are working harder to perform. Slower growth rate indicates the kidneys are not functioning as well as needed to continue an upward path on the growth chart. And levels of protein in her urine are also a sign of poor kidney function. We go on Thursday next week to discuss this further with him.

The ultrasound at the hospital was extremely lengthy. Not only do they have an entire list of images they are required to capture but she also had to take extra time to stop and take pictures of the larger stones and measure them. Previously we were told Sara had 2 large kidney stones in each kidney. At one point during the exam I looked up and saw 3 large circles on Sara's left kidney. The tech stopped at the first one, captured the image, measured it. Then she focused on the 2nd one. I knew what she was doing. They usually remain pretty quiet because they can't share information but since I already knew Sara has kidney stones I just asked "Which images show the kidney stones?" The tech paused and said "They are all over." She confirmed that the 3 circles I was looking at were stones and then there was a long narrow bar of them clustered together, as well. My heart sunk but in those moments, you have to be "normal" for your child.

We headed over to the urologist after the test to discuss the results with him. Shannon met me there from work and his mom was with us so we didn't have to discuss things in front of Sara. We opened the door of the office to standing room only. 90 minutes of waiting before we got back to see him. He was very frustrated and explained 3 of his nursing staff called in sick and they just couldn't process patients fast enough to get them back to him. By now it was lunch time and thankfully Grandpa George was on his toes to realize Adam would be hungry so they slapped some lunch together after a busy morning of working in the garage together.

The urologist indicated the ultrasound was comparable to last time but he still was perplexed by Sara's kidneys and used the phrase "we are entering new territory." We asked about surgery to fix the reflux because we felt it is too risky to her kidney function if she gets another UTI. He doesn't want to do reflux surgery until the kidney stones are addressed because if he does, it may make it harder to do something with the stones. But if she has 1 more UTI the reflux surgery will be immediate. The urologist mentioned again he thinks the stones are from when Sara was in the NICU and the meds she received. I'm so glad he mentioned that because I had forgotten we didn't have a chance previously to tell him we researched that with one of the NICU doctors and Sara did not have any of those meds. He looked at us stunned, "You're kidding? I don't know what to think now!" I greatly appreciate his honesty but that's not exactly what you want to hear.

He felt like he still wasn't getting a clear enough picture of the kidney stones to form a plan so he ordered us to go right over for an x-ray. By the time we got home that day Adam was already up from napping! I think we were all exhausted but I was thankful Shannon's parents had come to help.

The urologist contacted me Monday and said the x-ray did not show enough of what he was hoping so he wanted Sara to have a CT scan. Initially we were using this as a last resort because of the high levels of radiation she would be exposed to and he wanted to protect her. He spoke directly with the radiologist so they knew exactly what area to focus on and to keep it very limited.

In the meantime, I felt the need to begin researching things more myself. Late Monday night while Shannon was in bed, I did some internet research and found that Children's Hospital Boston has a Pediatric Kidney Stone department. I read everything on their site and called them on Tuesday. The nurse said I could send all of Sara's records to them and the doctor would review it. Then he would notify us as to what kind of appointment he would want to do but they would not do a phone consultation. However, they would consider a physician to physician phone call if our urologist would like some input. I held onto the information to discuss it and hoped he would be open if it was needed.

So yesterday we headed back to the hospital for the CT scan. Sara's eyes got a little big when she saw this big contraption. She laid down on the table and rested her head on the pillow while they brought her a warm blanket. They raised the table up and slid her halfway into the tube to position her properly. They laid a protective covering over her mid section and the nurse put a protective vest over me. For a moment, I wondered if all of this was going to affect her ability to be a mommy some day but I had to let that be a passing thought. I held on to her hand and the table slid into the tube until just her head was poking out, it made a whirring sound like an airplane starting up and you could see it spinning thru a little window pane on the machine. Then the bed came out, then back in, then out, and back in. She got real quiet and her eyes were like saucers but she didn't move a muscle.

I met with the urologist at 8am this morning to discuss the results. Adam was hanging out with our favorite neighbor for a bit. I was running late so she told me to just send him on over and she would watch for him. There he was in his PJ's, jacket, and crocs with a back pack strapped on hiking across the yard all by himself. When did he get to be such a big boy? I stood there for a moment as I watched him walking off and the neighbor came out and waved. I wished I had captured that on camera because it was reflective of how independent the kids are getting already!

Thankfully there was no standing room only this time! We got right in and...surprise they had another room with a cool exam table we hadn't seen yet - a bus!

Sara was very excited and wanted to hide her pez dispenser in one of the cabinets but the doctor came in too soon.

The urologist was very thoughtful and asked if it was okay that Sara was there because he knew last time I didn't want her listening in. I told him it was okay. The first words out of his mouth were "I told you before I didn't have a plan. I still don't have a plan." Then he asked to borrow my tablet of paper that had my notes for today's discussion so he could draw me a picture and help explain. Finally - this has been the most helpful information!

I am not sure why the picture is rotated that way but anyway...the picture on the left/top is a typical kidney that has kidney stones. The large circle in the center is where the stones are located and usually the opening of the tube where the kidney connects to the ureter is quite enlarged. That would be option A - surgically he would enter where the line with squiggles over it is and remove the stones. However, you can see how he drew Sara's kidneys on the right/bottom. Her connection point is not enlarged. It is small/normal sized and the stones are intruding into the opening of the tube leaving the kidney. This is not an option because her opening is just so small that he can't enter that way. 

Option B would be to do surgery like for an adult. That would involve inserting a tube about the size of a pen into Sara's side and removing the stones that way. Sara's kidneys are about 1/5 the size of mine. The urologist did find that they make a child-size instrument but the company makes about 5 per year and he would only use it 1 or 2 times per year so of course his recommendation to the hospital to purchase one has not gotten feedback. If he used an adult size instrument it would destroy too much of Sara's kidneys.

Option C turns my stomach. He would open Sara up, remove the kidney and hold it in his hand. Then he would cut it open like fileting a steak and reach in with his hands to remove the stones. This would be his most preferred method. If excessive bleeding happened, he would have his hands right on the kidney to repair it. If Sara only needed stones removed from one kidney he would go this route because if too much bleeding happened and the kidney died, she could survive on one kidney. It doesn't sound like it but it is also the most careful to her kidney. However, both her kidneys are in the same shape and it's just not an option to do this to both kidneys.

He told me he has been consulting with other doctors locally and they all agree that there isn't a good option. We are welcome to go to Chicago for additional consultations. Then he said "I also have a colleague in Boston that I am considering discussing this with." Really? I have been doing some research about Boston and their Pediatric Kidney Stone department. I like the idea that you know someone there so it could be a collaborative effort. In the end, he wants Shannon and I to be comfortable with a solution we choose and he is completely open to consulting with some outside resources. I asked if it would be easier for me to get Sara's records or for him to. He decided that if I went to the hospital immediately and picked up the CD of her images, I could bring it back to him and he would send it to be received by Tuesday. Then he said "Wait! There is a team here from Boston right now! They will be at my office at 9am for some meetings and then they are flying back this weekend. I can have them hand deliver it and tell my colleague to call me as soon as he reviews it." He left the office and picked up the phone to call the radiologist and put a rush order on preparing the CD. Then he told the receptionist at the front desk to not even check me out so time wasn't wasted - I would be right back! I think he was about as excited as I was. Within 15 minutes I had driven to the hospital, gotten the CD of all of Sara's records from both ultrasounds, her VCUG, her x-ray, and her CT scan, and was back at the urologist to drop it off.

I can't tell you how encouraged I am about discouraging news. Each time we meet we learn more about how unique Sara's situation is. It is very hard to keep that in mind when you look at her from the outside and see absolutely nothing different about her. I think God was woven into every step of this working out this way. From me researching more and finding Boston, to the urologist initiating the conversation and actually having a colleague out there, to a team from Boston being in town and able to get Sara's records delivered so quickly. I am expectant that our prayers will continue to be answered and we will find some positive news with the Boston colleague. Maybe that hospital will at least have the smaller instrumentation to perform the Option B surgery.