Helloooo Minnesota

Re- Submitted from cotaforbensonandclaires.com
What a whirl-wind these past few days have been. Emotionally, physically, physically, emotionally!! Jared, Benson, and Jared's parents drove over 16 hours and safely made it to Rochester, MN Saturday afternoon. Claire and I followed Monday morning.
Monday morning. Interesting day. Memorable last day at the Kidney Center in Denver. I came in thinking it would be somewhat memorable, but not as much as it turned out to be!
Claire's catheter got cracked when they were getting ready to put her on dialysis. That happened back in April(ish) and they ended up replacing the whole catheter and putting a different one in on her other side. No fun. What perfect timing to have her catheter crack again, hours before we were to fly out to MN and begin our new journey here. Our doctors and nurses were quick to get on the ball and called the surgeon to see if the catheter could be repaired without having to replace the whole thing. I prayed it could be repaired. So instead of spending her morning on dialysis, she walked around the center, played with the nurses, and got a dose of Vanco (antibiotics) just in case any infection got in with the crack. The surgeon finally made it up around 10:45 and said he hadn't really ever repaired a catheter like this before, but under the circumstances, he'd give it a try. Claire was sooooooo good (no shock) while he and his assistant did what they could: took off the cracked blue port, cut off that same piece from a new catheter, and medically glued it on her catheter. The surgeon didn't know if it would work or not when we tried to dialyze again, and if it didn't the catheter would simply have to be removed and replaced.
By that time it was 11:30 and time for us to head to the airport. That's when the emotions began to swell. Our time at the Kidney Center had been amazing. I truly couldn’t have hand picked a better staff to work with....or to be working on my daughter. I was very sad to say good bye and felt sad in Claire's behalf, because she didn't understand that she wouldn't see these people who loved her so much again....at least for a while. She loves them. They literally saved her life when this all began and continued to do that every day. With a smile. With laughs. We said our final “see ya laters” and sadly drove to the airport.
Before we left, Claire had to take some medicine that made the next few hours memorable beyond expected. Because she wasn't able to dialyze on Monday, she had 2 days without dialysis. They tested her potassium and it was high. Dialysis keeps it low and at safe levels. So they gave us some medicine (that looked ironically like poop) and said it would bring her potassium down to safe levels. She needed to take one dose before we left the hospital and one dose again later that night. They asked if I had lots of diapers and wipes for the airplane ride. There's the first sign of trouble. They loaded me up with a bag full of diapers and a full container of wipes. Oh, how I needed them.
Wish they would have given me an extra change of clothes. For both of us.

Blow out.
Waiting to board the plane I could tell she was pushing. As soon as I saw she was done, I quickly swooped her up and rushed to the bathroom to change her before it was our turn to board. As I carried her in my arms, I could feel my hip getting warm. I looked down and saw my pants with streaks of brown down my thigh. So not funny. Upon arrival at the bathroom, the rest of the damage was exposed. Her complete lower body was brown. Back of the use-to-be-white-shirt: brown. Both pant legs: brown. Socks: not so pink anymore. Cute Nike shoes: brown swoosh.
She rode pant-less on the airplane, with a blanket wrapped around her lower half. We stunk (to say the least). I felt bad for the people sitting around us.
Note to Kidney Center Staff: If AT ALL possible, don't EVER send some poor, innocent, clean soul on an airplane just hours after giving them that poop medicine....medically known as potassium reducer. Smiling about it now. Not such big smiles then!!
SO the memories were fun that Monday. I cried again on the airplane (not just because we smelt so bad) while Claire and I looked at the wonderful photo album the staff at the Kidney Center made for us with their pictures and thoughtful words. We love you guys. Claire loves to look at your pictures and still says each of your names when she turns the pages.
We made it to Minnesota and Jared drove us home with plenty of ventilation in the car. I didn't even feel bad for him.
Big new the next day....her catheter worked!!! Thank you Dr. Karr for being an amazing surgeon, successfully repairing Claire's catheter, and allowing us to avoid yet another surgery! We haven't had any problems with it and all has gone well with dialysis.
It's all the other testing they've had Claire doing that hasn't been so fun. We met with our Nephrologists, Transplant Coordinator, did a urine sample, and a chest x-ray the first day we arrived. All of that was okay except for the chest x-ray. Very scary for Claire. The position they put her in, the special x-ray strap they put across her legs to keep her down....just the whole experience was quite traumatic for her. She was more than ready to say 'bye bye' to those technicians.
The schedule we've been on this week has all-around been rough. They've had tests / exams / dr. visits scheduled for us all morning and then we've been dialyzing in the afternoon and getting home between 4-6. Long days for little ones. Thank goodness Grandma is here to take care of Benson.
Not to mention the stacks of boxes we have lined in our hallways and piled in our bedrooms, just begging to be unpacked.
Among other visits, she had an electrocardiogram yesterday and an ultrasound today. This type of schedule will continue through next friday, when all the testing/evaluations should be complete and we'll be able to get back into a morning dialysis regular routine. Unfortunately, her oxalate level was way high tuesday morning (because of missing 2 dialysis days in a row) and they want her to dialyze this Sunday as well to try to get her level back down. I'll be excited when these first two weeks are over and life settles down a little bit.
Oh the fun. Oh boy, oh boy, oh boy!!

More later.