Day by Day

A mama blogs the journey to transplant and beyond...

Saturday, April 14, 2007

Relatively Normal

It's been a while since I've updated. Nothing transplanted related has really been happening besides us refusing the 6 month biopsy. It passed without anyone saying anything. During one phone call conversation with Amy, the transplant nurse coordinator, she asked if it was true that we had rejected the biopsy - no judgements or anything - and I replied yes. A few weeks later Joaquin Prograf late had been consistently running on the high side - which can lead to kidney toxicity. That's the catch with the anti-rejection meds. We're not sure why his levels were running high - they kept asking us if we were feeding him something with grapefruit in it because apparently grapefruit is the only food that affects the medicine. I'm pretty diligent about checking for grapefruit in anything, but you never know. Nothing we could think of had grapefruit that would be causing it to run high. Another thing we found out in talking with Dr. Weintraub is that it could just be the rate at which he's growing. His body could be metabolizing the medicine differently now.

After about the 7th or 8th time of getting a higher than we're comfortable with Prograf level back we took it into our own hands to try and lower his Prograf. Around this time Amy called to try and push the biopsy on us. When she was talking to me about doing it I started crying. Things have been so peaceful around here - we've actually got to pretend that things are normal for a while for once. It upset me so much to think of taking him down there and having to put him under anesthesia. Not to mention that he's always that 1% of things going wrong. Amy said she's never seen any bad come from biopsies but in the same sentence she said how it always seemed like anything that could go wrong with a procedure seemed to happen to Joaquin. That really makes me feel good Amy, thanks.

We called and talked to Dr. Weintraub that weekend about it because we really felt as though we didn't have enough information to make a big decision like that. Part of me just wanted to go ahead and do it to get a piece of mind but the other part thought about that small risk that the kidney could become infected or other things. Dr. Weintraub said that in about 10% of biopsies they find rejection. But there is no conclusive evidence that catching early rejection will prevent rejection in the long run. Apparently there are two studies out of Canada about catching early rejection and one said that catching it early could prevent chronic rejection and the other one said catching it early could not prevent chronic rejection. At Stanford they are amongst the first to go the steroid-free route with kidney transplant so they like to see how that prevents rejection in the long run. Basically, the biopsy is a surveillance thing. So we haven't decided either way. We were going to wait for the next Prograf level to come back to help with our decision and when it came back a little on the low side - well, I guess it made up our minds for the moment. But I can't help but feeling some sort of "tone" with Amy whenever I speak to her. It's like disappointment or something.

Otherwise, things are going very well with all of us. In the middle of March we took a family trip to Las Vegas where we met up with Chris's parents and then drove over to Flagstaff, Arizona where they had a timeshare. Chris's sister and nephew, Dawn and Aiden, joined us as well. We had so much fun exploring the area. It was yet another time when I felt thankful for not being on dialysis. I should have pictures to view (like over 150) here soon.

Big news around here is that Joaquin is peeing on the toilet! We've been talking about it with him for a while now asking him when he's going to start going to the bathroom on the toilet like mama and daddy. Finally one day it all worked out and here are the first pictures from it:

He's so proud of himself. Now we're working on getting him to go poo on the toilet too. It all works out well because I don't want to be changing two sets of diapers. Oh, did you hear the news? We are expecting a little brother or sister for Joaquin in September! We're excited. I think Joaquin and the baby will be a nice age difference apart. He says hi to the baby and gives my belly kisses.

Joaquin's been really good at responding to our questions with yes or no answers. I really like how communication is improving between us. I've been volunteering at the local food co-op and Joaquin comes with me. He really enjoys meeting new people and making friends. There's been a couple times when he's been so sad that his new friends are leaving that he'll cry. Recently a woman came in who had been there before and before she left she said, "You know, I've been thinking about your son all week. The last time I was here you told him to wait a minute while you helped me, and he listened!" She thought it was so amazing how well he listened and the way we communicated. Sometimes I'm so amazed at what he knows and what he picks up. He's been making some small two word sentences like, "My ball," or "Daddy's car." He's obsessed with basketball right now and pretty much talks about it all the time. He runs around saying, "baketball" all the time. He likes to shoot hoops either through his little hoop or through a set of arms.

Other favorite foods include: pizza, tomatoes ("matoes"), chocolate ("cocky"), avocado ("cwado"). Actually he's not very picky. We've been making lots of stir fries and he'll eat a bowl full right along with us. I'm really loving that he's into avocados again since I'm also into avocados. We'll sit and eat a salted avocado or two.... or three.

Anyway, I promise to make an effort keep this updated more. Things are going so good with us right now. Things feel relatively normal.

In Arizona at Indian ruins.

On the way to Sedona from Flagstaff via Oak Creek Canyon.

patio furniture store
patio furniture store