A Whole Month

It seemed like we were gone longer than a day when we rolled back into Reno tonight around nine o'clock. But our trip had only begun the day before when we left to go to Palo Alto for our clinic appointment and xenapax infusion. I, of course, was nervous about today just like I'm nervous about any appointment we have at the hospital - even if it is just a clinic appointment. But one thing I've noticed about it: if I remain positive and lighthearted about it all, everything seems to go smoother. I can't decide or tell if it just feels like it's going smoother or if my positive attitude really does affect the situation. Probably a little of both. So last night, after we were all snuggled into our cozy hotel room at the Stanford Motor Inn (Ronald McDonald had no room for us) and the boys were asleep I promised myself that I would remain positive throughout the following day just because even if things don't go right, at least the situation won't be made worse by my bad mood.

I woke up this morning a little nervous but I told myself that everything would go alright. I always get nervous about going into the hospital because I'm always afraid that something will go wrong and we'll have to end up being admitted. But there was no reason to even think that we would be hospitalized.

The blood draw went smoothly, the phlebotomist listened to us when we showed him what arm was drawing the best and he got enough on the first poke. Joaquin barely cried. Now that is a sign of a good phlebotomist. Afterward we went over to the day hospital where they informed us that the PICC team (who also place IV lines) were already notified that we were coming in today and they would be there promptlyl at our scheduled time to start the xenapax: 10 am. They don't order the medicine until the IV is placed because they don't want to waste it in the event that they weren't able to place an IV.

We showed the IV nurses which arm they had luck placing the IV before and that there was also the possibility of placing it in his scalp like we had before. I don't know why some hospital staff don't listen to us when we tell them these things. We would know which arm worked best - we were there for it last time! So they tried poking him twice before they started listening to us. They were about to try and get one in his wrist when we decided that the scalp would be the best one. The one in his wrist was skinny and wimpy while the one in his forehead was fat and juicy. Luckily she got it in his scalp and we were on our way to getting the xenapax taken care of.

Towards the end of the week there was all this talk about a big storm coming across the Sierras and on Saturday night it was raining/snowing in Reno, so you can imagine what was happening in the mountains and especially at the summit, which we had to pass over. We didn't know if we should risk making the trip and just reschedule, but getting an appointment in the day hospital isn't easy. The whole reason that we were hospitalized the last time was because there was no room for us in the day hospital. Plus, the next xenapax isn't until January 8th so we figured that, with all of the holiday craziness and togetherness, the doctors wouldn't be expecting us to make the trip back down to Palo Alto in another two weeks (not that we would have... well, maybe.) Instead of worrying about when we could get another appointment scheduled for the day hospital, we decided to brave the journey. After all, we didn't buy our four-wheel drive Subaru for nothin'!

When we finally made our way over to clinic the place was a zoo! Kids running, screaming, climbing, crying all over the place. They got us in and out of our appointment so fast we think we broke a record for the all-time quickest clinic visit. But that can be both a good and bad thing. If you're not prepared with questions or ready to have them read off, you might miss your opportunity. The good part is that we were out of there quickly! And we were right: we don't have to go back down until January 8th. A whole month with no clinic and no doctors! Finally.

Joaquin is still having issues with his Prograf levels; they are still running on the lower end of what they would like to see. We are starting to think that it's the way the pharmacist in Arizona who compounded the Prograf. Also, his white cell count is on the lower side too. So Dr Wong was saying that he shouldn't have any raw foods. Chris and I have been eating lots and lots of raw food as of lately and whatever we're snacking on, so is Joaquin. His favorite things are raw brownies! And he also likes bananas and avocados. We wanted to say to Dr Wong when she came back in: "So, no fresh fruit or veggies, but he can have all the Cheetos and Oreos he wants?!" Dr Alexander thought it was silly that he couldn't have anything raw. He just said as long as we're cleaning the produce off good then we should be fine. All Joaquin eats pretty much is raw fruits, veggies, and nuts right now. We make a conscious effort not to feed him processed, pre-packaged, high fructose, partially or fully hydrogenated products. We want to teach him to eat the healthiest things possible for his body so that he remains healthy, and therefore his kidney does as well. I think about how when we eat something that has a dairy substitute in it or something to that effect it doesn't taste as good as the real thing but we only consider it the "real thing" because that's what we were raised on. People have a powerful connection to food because it can be comforting or remind them of the good times eating their mother's homecooked meals. But what if you were raised eating things besides just dairy and meat, sure you would try meat and dairy at some point, but maybe you would find your way back to eating what you were raised on. Maybe you would be able to tell how the fresh fruits and vegetables made you feel better than the dairy and meat and refined sugars. Just a theory. No matter what Joaquin decides for himself to put into his body in the future, I would like to lay a healthy foundation of a taste for fresh, organic produce. And also teach him to clean his produce thoroughly!

So we have another week with a few blood draws. Luckily they are only monitoring his Prograf level, which can be done so by just doing a finger poke. His veins are healing, though, but we would like to preserve them for when he needs larger amounts of blood drawn. It's nice that we can have that done and out of the way early in the day so that we have the rest of the day to do whatever we want do - or whatever needs to be done.