Mayo Trip

Overall, the one word I use to describe our trip is insane. It really was crazy busy. But to be expected for all we had to get in in a short time. Before we left, Jared and I joked that we could kind of count this as a family vacation...since we haven't been able to do that for a while. Sounded like a good idea. Boy were we wrong. NO PART of the past week a half can be categorized even near the word vacation. Being at home, even with the crazy schedule we have here, was closer to a vacation than what we experienced. Good busy....ornery busy, for kids with limited sleep....busy!

Here are some of the highlights. It's long!

Blessings and mini-miracles

None of us got sick--before, during or after.

Claire layed perfectly still though her echo, EKG, and ultrasounds. VERY unusual for her. They were thinking of sedating her through the echo, but tried it first without meds. That prayer was answered as they got exactly what they needed without any sedation. Except for the last one they did a day before we left. She was tired, all done, and simply sick of people touching her!! Can't blam the girl. She wasn't so happy having the x-rays done, but she was literally strapped to a chair for that...what do you expect.

Claire's bladder catheter stayed IN after almost coming out several times. Therefore, the 24 hour urine collection really only took 24 hours!!

Claire and I only had to stay one night in the hospital. Happy for all 4 of us.

We left our binder of medical records/itinerary and basically everything medically important for our trip in the wheelchair we were borrowing to haul all our stuff around and didn't realize it until we were back at our room, hours later. That binder could have been anywhere around Mayo and someone could have never noticed it tucked in the back pocket of the wheel chair. When we went back, it was sitting at the front desk waiting for it's rightful, thankful owner to claim it!!

The kids were champions in the car. 14 hr drive is no easy task for anyone but they were fantastic.

We got to stay at the Ronald McDonald House for $10 a night!

I meet with another mom and her 3 year old girl who has the same disease as Claire and Benson. She got her kidney/liver transplant when she was 18 months old at the Mayo. It was great to talk with her about her experiences and get her advise on various things. That was a blessing that she just happened to be there for her annual liver biopsy the same time we were. Great connection with someone who understands a lot of what we're going though and what is to come.

Ah ha moments--things we found out

Clinically, Claire is doing well. They are impressed with her current condition, attitude, energy, and physical strength (and of course how adorable she is!) The surgeon is happy to see a big(ish) tummy on her (thanks in part to the pertineal dialysis that stretched her abdomen) and would feel comfortable doing the transplant now if needed. But since she is doing relatively well right now, we're going to keep cruising along and fatten her up as much as we can. The docs hope she can be ready for transplant within 4-6 months. If anything changes in the mean time, or her condition worsens, we'll do it sooner.

That means, they are officially listing her on the transplants lists for a kidney/liver but will not "activate" her until she's bigger. Listing her without activation will give her 'waiting' time that will help boost her higher on the list for when she is ready to get the organs.

The biggest concern for Claire right now is her bones. Surprised us. We knew she had deposits, but we didn't realize how sever they are. They are surprised and happy she is walking and getting around well without any pain in her joints. If any of that changes, transplant would be moved up.

Claire can definitely see. The ophthalmologist said she indeed has significant deposits/oxalate crystals in her eyes, but they don't affect her vision as much as would be expected. Both the eye and bone deposits will eventually go away, after transplant...years down the road. She most likely does have some vision damage (which won't go away), but it doesn't seem to be significant.

Claire is blood-less. Well not really, but they drew 15 ml from her EVERY day!! That is a lot of blood from a little girl. She'll be getting a transfusion on Monday to boost her back up. She's pale.

Protecting Claire's new transplanted kidney will be one of the most important things to watch for post-transplant. All of the oxalate in her body now has to be sent through her new kidney to get out of her body. Protecting her transplanted kidney with LOTS of water, and possibly even occasional dialysis will be necessary until the oxalate is removed. It could take years for the over-load of oxalate to be removed from her body. It is possible to "lose" the transplanted kidney due to the load of oxalate going through...leading to permanent dialysis and yet another kidney transplant. Just FYI for our preparation of what is possible to happen. Obviously something they try to prevent at all costs, but not unheard of.

Benson is doing well....but on the spectrum of kids who are doing well, he is on the higher-risk end of the scale. The 24 hr. urine study they did showed an elevated amount of oxalate passing through his system....which is good it is getting out of his body....but means the kidneys are taking the hit for it. Watching his kidney function and increasing his B6 is just about all we can do for him right now. ((and prayers, of course)).

Benson knows how to share his mommy with his sister. He loves that little girl.

We started Claire on a new medicine called oxalabacter. It is a new drug that is not even FDA approved yet and has only been used in two clinical studies. In both studies done, the results were very varied. (which is why it is not FDA approved yet.) On some patients, it was VERY effective in removing oxalate from their body. On other patients, it didn't seem to make any difference at all. But they did get permission for Claire to try it on a 'emergency/trial' basis. It's worth trying....if it could get rid of some oxalate in this in between time before transplant and protect her body, it's worth it. So far she hasn't had any side-effects from it. We'll test her stools every week and her oxalate level every 2 weeks to see if it's working. If after 3 months there isn't any significant change, we'll stop it. We're praying it works. ((they won't let Benson try it because his situation isn't as sever as Claire's. Possibly after more tests/studies, it would be available for him.))

We should have taken a stroller. Mayo is a big place.

It is miserably, stinking cold in Rochester. Only one day was above freezing.

I need a vacation. :) A real one!

It was a great blessing to be out there. We were talking to the right people at the right time with the right expertise. We trust their judgment. That is a good feeling. Better than any vacation. Well, ya know! :)