Saturday, March 30, 2013

Early birthday presents

A few weeks ago our favorite long-time friends were visiting and surprised the kids with early birthday presents! I didn't even know they had brought presents until Adam asked excitedly, "Mom, now that we are done with dinner, can we open our presents?"

Sure enough, Uncle Dan headed out to the car and brought in something for each of them. Adam was super excited to put together his airplane.

Then Aunt Ree whispered something in his ear and he headed upstairs...

Next we went outside. It was dark, cold, and we had flood-producing rains the day before. Why let that slow you down?!

Then it was back inside for Sara's present.

A princess puzzle! And a challenging one at that with curvy sides. What a great present for Sara - she loves princesses and we had been spending a lot of time on puzzles lately. Here she is posing with the completed project.

After looking at the preview of the picture I took, Sara told me I had to retake it because I was only supposed to capture the head of the puzzle! Oops...

A few days later it was time for a daylight flight. Over there, dad, fly it that way.

It flew all the way across the front yard and landed on the road!

You may be wondering about Sara's hat. She had a surgical procedure that morning and she wanted to wear the hat she had picked at the hospital.

Adam thought it was especially neat that every time the airplane landed nose down, the wings fell off as a safety mechanism.

Can't wait for their next visit!

Tuesday, March 19, 2013

This is what kidney stones look like...

WARNING: If you don't want a visual of what kidney stone particles look like and seeing something that has come out of someone else's body freaks you out a bit, don't read further!

However, if you have been following our journey and have a curiosity as to what these pesky things look like, below is a fascinating snapshot of our collection container that will be on the way to the lab shortly. We tried to drop it off at the hospital tonight but the doctor had not put the orders in yet so the lab refused to accept them. We are trying to get them analyzed ASAP because we don't know how long it will take to get results and we want them back by her next nephrology appointment on April 11.

It's crazy to me how many we collected. She probably passed about this amount, as well, before we started collecting. Some of the pieces are quite large. After not being able to get any results from what was removed in Boston, I am excited about the possibility of finding out exactly what the chemical DNA is and if it will lead us in any different direction for treatment.

Monday, March 18, 2013

A few less stones

Just a quick post tonight to say how excited I am to announce that Sara peed out some kidney stones today! I am certain that is what the unexplainable pain has been over the past week. They must have been moving. Twice tonight there were particles that looked like small grains of sand, some larger than others, in the toilet. I am hopeful that it is the ones from the left side that were broken up smaller. I will celebrate any step, no matter how small, that is in the direction of getting those things OUT!

Thank you is not enough to say to all of you who have been praying so fervently for my kids!

Thursday, March 14, 2013

One stentless girl

Another excursion to OSF today to have Sara's stent removed on the right. As soon as the elevator doors opened and we stepped out, the nurse was waiting to take us back to pre-op! Kinda felt like someone was stalking me.

Sara removed her coat and shoes and weighed in - 27.8 pounds! Best news all day. One more pound and she will finally be caught up to where she was before her Boston surgery. She stepped off the scale so the nurse could check her height. They have a measurement chart painted on a mirror. Sara stood in front of it, flipped both sides of her hair back, and turned around to back up to the wall. Shannon and I just stood there dying laughing!

Surprisingly we went to a totally different pre-op room that we have never visited before. Sara meandered to the playroom for a bit and we found that the previous occupant had completely emptied the toy shelves and spread them all over the floor. Dr. Rhee nearly tripped over something while getting to Sara to mark his initials on the right side of her tummy. We expressed our concern over how Sara has been feeling over the past week. About 5 times she has run a low fever and complained of extreme pain, sometimes to the point of tears and curling in a ball on the couch. There has also been blood in her urine. Dr. Rhee asked if she has been pooping every day, thinking she could be constipated. He also said it could be from the stent. Call him in a few days if it continued.

Dr. Rhee was frustrated that I allowed Sara to eat breakfast, even though I was told she could eat as long as she was done by 7. He was running early today and could have moved surgery up if she hadn't eaten. He is going to schedule any future surgeries for first thing in the morning because he doesn't want her to go 8 hours without fluid as it's not good for her kidneys.

After he left Shannon and I both agreed that we know Sara better than the doctor does and her level of pain and other symptoms are enough for us to be concerned. I asked the nurse to call Dr. Rhee and say we wanted an x-ray today rather than waiting a few days and making another trip. I felt good about exercising my mom power and listening to my gut.

3:00 finally arrived and Sara told the nurse she wanted a piggy-back ride back to the OR instead of a wagon ride. The nurse said she was probably not the best person for that job and allowed Sara to go into a storage closet to pick any "ride" she wanted. I thought it was odd that she would turn a piggy-back request down from such a little peanut but appreciated her hesitation when the other nurses started teasing her about her ability to trip over imaginary lines on the floor!

10 minutes of putting in an IV and giving her sleepy medicine--peach this time. 3 minutes of removing a stent. 15 minutes of post-op discussion with the doctor. He said the x-ray showed that she did not have any poop in her so the pain definitely wasn't from constipation. Uh-huh. He isn't sure why she is having pain. Watch it for a few days and let him know.

Our biggest question is what do we do if faced with an emergency situation and one of the stones begins to pass, causing a blockage. He said there is only one weekend a year that both he and his colleague are out of town. Otherwise one of them is always available. And the emergency solution would be placing a stent to allow urine to drain while planning for what surgical option may need to be considered.

I asked what kind of time he wants to wait--1 year, 5 years? He really doesn't know. He wants Sara to get bigger. If another robotic surgery is needed down the road, the entry point at the opening of the kidney was already a very tight space for the surgeon in Boston. Now that surgery has already been performed, there is scar tissue there making a repeat procedure 3 times harder until some healing occurs. For sure we would not do both kidneys at once because it is too dangerous. He feels at some point we will need to get every last kidney stone fragment out to prevent recurrence. That will likely be either thru a repeat robotic procedure or by opening her up, removing the kidney, cutting it in half, and suctioning the stones out. A very risky procedure. He is unsure what effects the waiting will have on her kidney function.

In the imminent future, she will have an ultrasound in about 4 weeks. She also sees the nephrologist in mid April for another round of blood tests to check in on kidney function.

And so we wait. The waiting has become harder on me lately. Every time she runs a fever, every time she complains of pain, I am uncertain what I should be doing about it. Faced with no answers and nowhere else to turn, our faith is what remains to stand firm in all this uncertainty. It feels like the news we received in the NICU regarding Adam's Grade III IVH when we learned he had a 35-40% chance of CP but symptoms would not present for possibly a year or two. At that moment I couldn't even imagine how I could exist without the wondering being on my mind every single day. But it faded and we lived a normal life. That is what I will be working on now.

Wednesday, March 6, 2013

Mommy and Dada

The past week or so the kids have been playing Mommy and Dada together a lot. They create a family of babies, take them for stroller rides, change diapers, put them in a highchair and feed them food, burp them, lay them down for a nap, etc. Instead of calling each other Sara and Adam, they refer to each other as Mommy and Dada. Sometimes Shannon and I get confused, thinking they are talking to us and they both give us a look because we didn't understand their secret code of slightly different parental nicknames. They argue about so many things at has been nice to have moments that they play so well together!

The other morning they were really making me laugh. After breakfast, both dressed up in their aprons and gathered their family. Adam had both his "kids" next to him, reading them a story. Notice the hot mits on the cat.

Sara patiently put a hat on her baby.

Adam gently tucked his puppy's hair in his hat and talked to him with comforting words.

I guess both his babies got cold and needed mittens!

New car mat

My mom has wanted to buy Adam a mat to play with his cars on for quite a while but she has had a hard time finding just what she wanted. A few days ago we were at Menards and one caught her eye. She showed it to me and certainly wasn't sneaky about it so Adam was all over it. He convinced her it was perfect and helped load it in the cart.

Once we got home, we got it unrolled right away.

A hospital, a fire station, a police station, a burger joint, an airport, a construction site, a baseball diamond, a zoo, and of course a Menards!

Adam ran to get some cars right away.

I have been wanting Adam to have a spot for his cars, a corner of his own. We worked together to pick up a corner, position the mat just how he wanted it, and then we made parking spaces for his larger vehicles. My favorite part? I took a picture of how they were parked and hung it on the wall so he could have a clean up guide at the end of the day. So far his cars have gotten put away every night before bed and I haven't had to fight with him on where they go or help him make a spot. Tonight he was so excited and said "I did it all by myself!"

Since Adam got some tape from Menards, I let Sara pick out some fun tape, too. She decided to decorate a box to hold a dolly or stuffed animal with her new tape - penguins! Every time the kids see it they sing "Penguins, penguins, everywhere penguins!

Sunday, March 3, 2013

Our medical mystery

That would be Sara.

She had her second lithotripsy on the left on Valentine's Day. It was Shannon's turn to walk thru the process alone because I was sick with the flu. This one was a little harder on her, we think because she was just getting over the flu herself so she was pretty wiped out.

Adam's post op nurse a few days ago was the same one Sara had. We were laughing about how different the kids are. She held a pain scale paper up to Sara and explained the different faces, then asked her to point to which one she was feeling. Sara pointed to an 8. The nurse asked if she wanted her dad to come back and she said "No" pretty indifferently. High tolerance for pain and deals with it well!

Dr. Rhee and Dr. Nguyen from Boston consulted. The plan was to shock the left again to break things into very very tiny pieces and then pull the stent, hoping they would all pass. They wanted to get her left side nice and clear before determining next steps for the right side, which was being more stubborn. I took Sara for her follow up x-ray Wednesday night last week and then we all ate dinner in the cafeteria at the hospital. So strange to be there with the kids when I remember vividly being there alone and blogging about how their NICU day was going.

By the way, she didn't want stickers after her x-ray. Instead she picked "Lizzie"...

When I saw Dr. Rhee pre-surgery I told him the x-ray was done and we were supposed to see him the next morning. When we met in the conference room post-surgery, we finished discussing Adam and then moved on to Sara. I was expecting great news about how the left was clear and then probing for what we were going to do about the right. I should know better than to have expectations, especially with Sara. He said there is still a lot of shadowing on the left so either the stones aren't passing or they are coming back together to form one big stone again. He wasn't sure. When you hear unexpected things like that you have to compose yourself in the time it takes to blink and swallow. I asked him if he was going to tell me she needed robotic surgery again since the lithotripsy wasn't working. He honestly answered that he didn't know, but he certainly wouldn't put her thru 10 hours again. He was going to have the x-ray emailed to Boston to consult and get back to me next week. There has been no change on the right--still 2 stones and the previous lithotripsy did not break them up. At this point he is leaning toward leaving them alone. Inside I thought Excuse me? He said they aren't causing her any problems and nothing we are doing is helping.

I don't know but everything inside of me says that is an unacceptable option. The stones aren't bothering her now but they will eventually. And they will affect her kidney function. And he won't even consider surgery for her reflux until the stones are out.

We keep forging ahead and living a normal life. Granted that means every day Sara plays Mama to her babies and they are sick, needing some kind of shot or x-ray, but hey that's normal to her! This journey so far since August feels like it has been so long. But looking ahead, we really haven't even begun the lifelong journey in dealing with her chronic kidney disease. I told someone the other day that I need to figure out how to have endurance with energy because right now I am just weary.

Adam is stentless

Last Thursday Adam had what we hope to be his last surgical procedure in quite a while. Ever would be fine with me. Shannon was out of town teaching in St. Louis all week so Adam and I flew solo. It's getting pretty comical how much he knows the whole hospital process. Valet parking, where registration is, questions they ask, hit G for Ground and tell the lady at the desk his name is Adam. She was even so busy this time that she didn't give me any of the normal paperwork and just said "Have a seat - I know who you are!"

Fifteen minutes later I saw her walk toward me but at the same time, the door opened for the nurse to take us back to pre-op so she said "I will catch you when you come out!"

Adam got weighed (31.4 lbs) and measured (3' 3"), although I am not sure the height is right. Then we wandered back guessed it...the same room we have been in...let's see...5 times now. I think once Sara picked a different room to change things up. Adam told me he was going to answer the nurse's questions, then get dressed in his hospital clothes, and then he wanted to head down to the play room. Dr. Rhee did check in quickly and markered the surgery side to prevent confusion in the operating room. It's a quick trip by now because I don't really have any questions. many toys to choose from. Of course he wants to get most the stuff out and play with it for only a few minutes. The struggle with that is that it has to go in a "to be cleaned" bin instead of back on the shelf. They never have a big enough bin for when we are there!

How can you resist a front loading truck that also has a dump bed?

The anesthesiologist team met us in the play room to review Adam's medical history. He decided to be shy and hide behind my legs, which doesn't happen often. They always initiate the conversation by saying "Now he was born quite prematurely, right?" And then they want me to go thru the whole list of NICU issues he had. The comment she made that was most strange was when she said "Does he have any other issues besides obviously being small for his age?" I replied "What do you mean? He's not small for his age? He is completely caught up and actually taller than some kids his age." She said "Oh, he is? Well, how old is he?"

I asked Adam why he was shy around those ladies and he said it was because he didn't know them. It was true, we had never seen them before, and they weren't very child friendly. They could have at least included him in the conversation instead of being all business.

We headed back to our pre-op room and the nurse was ready to take him to the OR, on time for a change! It helps when we aren't waiting on equipment. He decided today that he didn't want a wagon ride and he was just going to walk. Leaving Blankie with me and taking Sara's new kitty she got from Aunt Robyn, he gave me a hug and kiss and said "Bye mom!" and walked off with her.

The lady in the family waiting area was still swamped and asked if I needed any paperwork or buzzer or anything. I said no, just give me his number so I can monitor his progress on the information screen. Less than 15 minutes later she told me he was done and took me to a conference room to speak with the doctor. The status on the information screen hadn't had a chance to change off of "In Pre-Op".

The procedure went as expected, very easy. He needs a follow-up ultrasound in 4 weeks. Then again every 3 months for a year to make sure the blockage does not return. The dilitation (which was kind of the irritated area where the blockage was) may take up to a year to improve and it probably won't ever completely resolve.

He was upset and crying when I got back to his post surgery area and a nurse was rocking him in a chair. I think it was more from waking up from the anesthesia than from pain, although he said his IV hurt. Sometimes they wrap the bandage too tight. He calmed down after a while and started asking for apple juice and teddy grahams. After a large glass of juice and 2 bags of snacks he was good to go. The nurse left to get his discharge papers and he said "Ummm...can I have some stickers since I was so good?" Working the system!

Best of all, he had no pain and it didn't even hurt to pee! Goodbye stent...we won't miss the pain you caused while he was running and jumping and being a boy!

Friday, March 1, 2013

Ditchin' the pull ups

I realized last night that I have only slept thru the night 3 times since Boston. I don't know what it was about Boston but ever since we came home, Sara has woken up every time she has to go potty in the middle of the night. Sometimes only once, usually at 3am. Sometimes twice, usually at 1 and 5:30. Before then she just wasn't potty trained and would pee in a diaper. I think maybe 3 times she has had an accident in a pull up. It's been over 2 months and I finally decided to stop wasting pull ups.

Tonight after bath time, I said "Sara, I have something important to tell you. I decided that we should be done with pull ups and you can just wear panties overnight." She was so excited she said "Yay" and started jumping up and down.