Sunday, September 30, 2012

Out of the mouths...

I was brushing my teeth this morning. The bathroom door flew open, surprising me a little. Adam had on his pajama shirt, orange monster truck underwear, and one black sock pulled all the way up to his knee..."Mom it's not ba-noc-u-leers, it's bee-noc-u-leers." He slammed the door back shut and left as quickly as he came.

I stood there for a moment as my mind was trying to register whether that just happened.

RIP flip flops

Adam is truly the master of flip flops. He can wear them better than I can. He can wear MINE better than I a full out sprint across the yard! You have to have some serious toe strength to do that, especially in a pair that is 2 times your size. I have been watching his flip flops slowly get more and more worn throughout the summer. He must really grip with his left toe because it was really getting thin and I wasn't sure they would last much longer. I came home from work the other day and he had finally worn a hole thru them. Granted, they were Old Navy 2 for $5 quality but they look nothing like the other half of the purchase that day which his dainty twin sister wears!

I think next year I will invest a little more money in flip flop purchases.

Just because presents

 Today was such a fun day!

I had bought Adam a bike at the most recent Peoria Mothers of Twins Sale and we hid it in the basement. My intent was to wait until their birthday in April and buy one for Sara, too, to be birthday presents. Then my cousin reminded me that there may not be bikes for sale yet at that time of year and we should consider buying end of season and saving it. That's exactly what we did...kind of!

Once Sara's bike was hiding in the basement, too, I told Shannon I couldn't believe we would have to wait 6 months to give them to them! I'm terrible at waiting for fun presents. Shannon surprised me and said "Then let's not wait! Let's give it to them as a just because gift!" Sounded good to me. Then it was a matter of picking the day when we could all be together as a family.

This morning was the day. We got them lined up outside to surprise them.

 They came out and I heard a "Woo hoo" and a "We got new bikes!" But honestly, I thought they would express a little more excitement.

 They went right over to check them out.

Adam's is looking pretty proud of his new big boy bike!

Little Miss Sara with her hand on her hip - what a pose!

Sara hopped right on and off she went down the driveway with no hesitation! I could hear Adam telling Shannon behind us that he didn't like it wobbling. Sara rode down to the end of the cul de sac and back while Adam was just making it out of the driveway!

The more they road the more they got the hang of it. We spent well over an hour riding this morning. It was nice that I could walk at a decent pace and they weren't constantly running into me!

Happy just because present, kids - we love you!

Friday, September 28, 2012

Out of the mouths...

Picking shirts this morning...

Me: "Sara, do you want a flower shirt?"
Sara: "No."
Me: "Do you want Will trade brother for a cupcake?"
Sara: "Yes."

Adam: "I wouldn't trade Sara for a cupcake. I would just eat it all gone!"

That pretty much sums it up for Adam. Not only would he not trade or give up his sweets, he devours them and asks for more!

Sunday, September 16, 2012

Have pee, will travel!

The kit arrived for Sara's 24 hour urine test. I decided that last Sunday was the big collection day, so to speak. She had to pee in a little tub for 24 hours (except overnight) and then I had to dump it into this orange container that looked like a small gas can. We had a conversation that she couldn't go potty by herself all day and she couldn't have any accidents or we would have to do the test all over!

To add to the situation, we decided Sunday was a work day at my mom's new house down here. So Sunday morning after breakfast, we packed a lunch and gathered up our pee kit and headed to Grandma's house! After working and having lunch over there, we packed everything back up and came back home for naps. When they woke up, I packed dinner and the pee kit again to do some more work over there. Driving around with a big container of pee didn't sound too appealing to me. Opening a container of pee and adding more urine to it throughout the day sounded even less appealing. But actually it wasn't too bad.

I can't believe at the end of it all, I only had to shake the container and then transfer enough to fit in a little vial. The vial got shipped FedEx Express to the lab and the rest was disposed of. Apparently that's all they need to determine what her kidney stones are made of.

In other updates, the doctor determined that while Adam's right kidney drained much slower than the left in the Mag 3 scan, he does not have a blockage because when the Lasix was pushed the right kidney did finally completely drain. He sees the urologist the first week of October to determine next steps to diagnosing what is causing his dilitation.

As for Sara, she got another bladder infection (her 3rd in less than a year) last week. She woke with a fever on Tuesday morning. My immediate thought was wondering if it was another UTI. I kept fighting to dismiss the thought because she is on the maintenance antibiotics every day to prevent a UTI. She seemed fine other than the fever - she ate normally, acted fine, wasn't mopy or complaining, etc. This is making my radar kick in even more because that is exactly how she was for the previous 2 UTIs. I headed to work and tried to shake my uneasiness but just couldn't. I wasn't sure if I should call the pediatrician or the urologist or the nephrologist. I wanted to take her for a quick urine dip test and not pay for a doctor visit in case it was nothing. It's really hard right now because there really isn't one doctor that is always my go-to person. Shannon and I are essentially the primary doctor and the kids' expert advocate.

I ended up calling the nephrologist and the nurse suggested just taking both kids to the hospital because they needed urine and blood work done anyway. She thought she would get results back the next morning. I left work early and picked them up at the end of naptime and headed to OSF. Being 3 is a really good age to deal with some of this stuff - they were so excited to get a hospital bracelet and had no worries about being poked with a needle! Sara didn't even wince when the needle went in! Adam whined a little but still did really great. They both got to pick a stuffed animal and we were on our way.

Wednesday morning I waited until 10am before making a phone call to inquire about Sara's lab results. I finally got a return call just before lunch. The nurse felt the results were inconclusive. It showed some bacteria but that could have occurred from peeing in the cup. She asked me how Sara was feeling and I said the same - fever, eating fine, behaving fine, no pain during urination. The nurse commented that was good but to me, it wasn't. That was still exactly how she acted the previous 2 times she had UTIs. Somehow I am not getting my point across. The nurse still wanted to wait until at least the preliminary culture came back and she thought she would have it by the end of the day. Reluctantly, I agreed and let her off the phone.

She called back at the end of the day to tell me the preliminary results were not in but for sure in the morning. Another morning. 2 days now since Sara's fever started. I'm feeling quite confident that she does have another UTI and it feels like a constant ticking in my head as time is passing. What I hear in the back of my mind is the nephrologist telling me we need to do everything we can to prevent another infection because each one is more and more damaging to Sara's kidneys. But I comply and wait.

11:00 Thursday morning and I still haven't heard from the nephrologist. I call and tell the receptionist I am not interested in leaving a message, that I want to speak to someone. They were just pulling up the results and would call me back. 30 minutes later, they called to confirm she did have another infection. Really? Thanks for letting me know! They want her to stop her maintenance antibiotics and do an 8 day high dose. We headed to WalMart after naptime to learn that the $625 prescription was not in stock. 7 phone calls to other local pharmacies left us with no option but to wait another 16 hours for it to be overnighted.

I spoke with the nurse again on Friday to let her know I did not want to resume the maintenance antibiotic Sara was on like she was suggesting. "Why not?" she asked, perplexed. "Because she has been on that for a month and a half and she got an infection anyway." The nurse didn't realize she had been on it that long. Her other blood tests came back showing that her kidney function is not good, but it was better than he was expecting. Do I feel good about that? She indicated he would want another full blood work in 3 months. I expressed that we were not interested in waiting 3 months for a follow up about how to prevent another infection, determining a course of action, and learning about the further damage this infection caused. The results of Sara's 24 hour urine test should come back early next week and we will touch base once those are in to determine next steps.

Meanwhile, I called the urologist to catch them up on the week. Someone needs to figure out what Sara's maintenance antibiotics will be when this 8 day course is done.

Words to describe the past week? Frustrating. Stressful. Emotional. Unacceptable.

These days are almost harder than when the kids were in the NICU because so much more of the weight is on me to keep people informed and push for things to happen.

Thursday, September 6, 2012

Work day routine

The kids and I have gotten into a routine when I leave and return for a work day the few days a week that I am gone.

I usually leave when they are in the middle of breakfast so they take a break and head out to the front porch to sit on the stoop and wave to me. I roll the window down to hear them screaming "BYE, MOM!" and waving wildly as I honk the horn twice.

At the end of the day, they are usually outside playing. When they see my "big red car" pull into the driveway, I honk twice and they come running...Adam always in the lead, Sara trotting behind...yelling "STOP MOM, RED LIGHT" and putting their hand up.

They get the door open and climb in. Yes, Adam is usually wearing his bike helmet.

Adam is trying to get the door shut. Usually he opens it too far and I have to lean over and practically fall out of the car to help. Sometimes he wants the seatbelt on and sometimes not.

Adam goes for the window and rolls it all the way down to stick his head out and yell "GET OUT OF THE WAY GRANDMA!" Sara turns on the radio and cranks the air. See her hair blowing?

Then we ride the rest of the way up the driveway together.

If they catch Shannon when he gets home, they do the same routine with him. But usually he pulls in and makes it just in front of the garage door before they get to him. He tries to reason with them and say that he is almost in the garage so whey do they need to climb in? Silly, dad, they don't care that you are only driving 10 feet!

And on really fun days, they catch him coming home on the motorcycle and get to take turns riding into the garage with him.

Wonder what we are going to do when the snow comes?!

Tuesday, September 4, 2012

Mag 3 scan day

Today was a very early morning waking Adam at 6am to get breakfast and dressed to make it to the hospital. Seemed like an easy task. I made one flaw in my calculation - having to keep track of 2 kids instead of 1! I was going to lift Adam out of bed and carry him out to snuggle and get him woken up. But Sara had been up twice between 5 & 6 so when it was time for Adam to get up, she didn't understand why I couldn't snuggle with her, too. Shannon had to leave to pick up Ivy from being boarded for the weekend, bring her home, and then meet us at the hospital so he was on a tight timeframe, too.

With his new backpack loaded with his Bobcat magazine from Grampa, both his Bobcat machines, and blankie, we made it to registration about 15 minutes late, but still in plenty of time to get checked in and watch the cranes working on the construction project again.

Nurse Nonnie did a great job of preparing us and keeping Adam calm. I knew that Adam needed more bloodwork in the next week so I asked her if she could take care of that today when she put in the IV, as well. Good thinking, mama!

This is the table he laid on. He climbed on and then it raised up and she slid it down so his body was positioned over the imaging camera.

Nonnie tried to get the IV in his right arm first in case he would need to suck his thumb for comfort but it just wasn't happening. Words can't even describe how hard it is to see your son look at you like "mom, make her stop" because a needle is moving around inside his arm. She finally gave up and tried the other arm - much better. The needle went in but he must take after Shannon - his blood is thicker than molasses! An assistant was squeezing his arm, trying to lower it so gravity could help, use a syringe to draw the blood out. It was just a challenge. She finally got the 2 vials and Adam said to her calmly "you can take that out, now."

Here he is watching his Thomas the Train video that he picked. Nonnie injected the radioactive isotopes so we could see it flow thru his body. The little silver frame you see under his bed is the imaging camera.

This is the monitor we watched as his test progressed. 5 minutes in, 35 minutes to go...

Here is a close up of the shot. The dots are what they injected flowing thru his body. If you look closely, you can actually see an image of most of his body - each arm sticking out, bent at the elbow and his thighs at the bottom. The 2 bright white circles in the middle are his kidneys filling with the fluid. And the bright white circle centered below the kidneys are his bladder. His kidneys are emptying into the bladder.

Now 14 minutes into the test and Adam is really starting to squirm that he has to go potty. We are trying to get him to hang on at least another 5 minutes!

You can see nearly all of the left kidney has drained into the bladder but the right kidney remains bright. This is the kidney we were checking for blockage and it's not what I was praying the screen would look like. It isn't completely blocked but certainly isn't flowing like the left.

Nonnie kept saying over and over how well Adam did. She had staff waiting to assist her and everyone was shocked that they didn't need to help. He told me it hurt a little and he cried a little. Unfortunately, I got a call from the lab on the way home and one of the vials of blood wasn't usable because it had started to thicken too much. So it will be back to the lab with both kids to finish out bloodwork sometime soon. Not looking forward to that.

We got home and Adam jumped out of the car and yelled "Grandma I'm all better!" Soon, my little warrior!

So all in all, not a bad birthday but certainly not the best I've had! It got better as the day went on but I don't think I will pick that for a birthday present again any time soon.