Day by Day

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

Friday, December 29, 2006

Happy New Year!

Tomorrow morning we are packing up the Subaru and going to the Bay. We are seeing one of our favorite bands in San Francisco for New Year Eve, although Joaquin will not be seeing this concert with us, it's a little too late. Instead, Chris's parents are going to get a room in the same hotel as us so we will be able to go out and enjoy ourselves... together.

Things have slowly been returning to normal. Our next appointment is January 8th - it will have been a month since our last visit. The next appointment includes a xenopax infusion, which always makes me a little anxious because putting the IV in is a little stressful. After that infusion, we only have one more in February. I'm not sure what will happen as far as clinic visits because eventually we will only be going down to Palo Alto once every three months. But I don't know if that will be happening too soon - it's a possibility.

We've only had to do one or two blood draws in the last two weeks. His Prograf levels have been looking good, along with his other labs, so we have been given an extended holiday. I'm hoping that it's not a holiday and that we can move there permanently.

Joaquin continues to thrive, as you can see from the pictures. He had a nice Christmas and had fun opening the presents he received. We made a yummy Christmas morning breakfast and sat down and enjoyed each other. Later we went to Chris's sister's house for Christmas dinner where Joaquin got to play with his cousin, Aiden.

Joaquin's appetite continues to increase, too. He's always coming after me saying he wants "yum yums!" while rubbing his belly - which is actually sign language for please. His favorite snacks are date and nut balls that I make, bananas, eggs, cheese, hummus, and - well, mostly everything. He's not a picky eater at all, and I hope that we don't have to go through that. I'm just so happy and thankful that he wants to eat and is asking for food.

Other than that, things have been very mellow and somewhat boring around here. It feels good to be home and to be away from doctors. We hope that you all have had a happy holidays! We think that 2007 is going to be a good year.

Saturday, December 16, 2006

It Feels Like Home

It has almost been a month since we've moved back to Reno from Palo Alto. And while I miss the farmer's markets and close vicinity grocery stores, I don't miss being down there away from home. After being home for a while I realized just how displaced and unsettled I felt down at the Ronald McDonald House. We made the most of it, as did/do so many families. A person doesn't really have any other choice than to just adapt to a situation like that.

We've been going in for a lot of blood draws because of the Prograf levels being so weird, but I think we've come to a unanimous conclusion that the levels were wacky because of the way the pharmacist mixed it in Arizona. Now that we have in on some different Prograf from the compounding pharmacy in Reno his levels have been where they want them to be. Last week we did labs Monday, Tuesday, Wednesday, and Thursday. The phlebotomists at the labs were never too happy to see us, it felt like. On a day that they had drawn extra blood we came back the next and the phlebotomist told me that they had drawn more than enough, we shouldn't be back. I had to explain a few times that it doesn't matter how much was drawn the day before because the levels can fluctuate from day to day and we need to monitor that. By Thursday I told myself that I wouldn't come back in for labs on Friday even if they told me to. I was going to draw the line. No more. But I never heard from the doctors or Amy on Thursday and so I figured no news was good news and we slept in the next morning. I got a call in the early afternoon from Amy saying that we didn't have to get labs again until Monday because Prograf levels were looking alright. So hopefully things will continue to look good and *hopefully* we'll be back to our desired once weekly labs.

Joaquin is working hard at pushing about 5 teeth through his gums right now. One night the poor little guy was inconsolable because his teeth hurt, but he ended sleeping alright after a good cry. He is fine-tuning his walking skills and has even conquered a new move: to go from sitting to standing by getting up on all fours and then pulling himself to standing using his balance and tummy muscles! The first few times he did that we all cheered and he was so proud that he strutted around all the while smiling at us. He is learning new words and practicing his old ones. Some new words include: apple and puppy. And he loves exercising his new-found opinion by saying "No!" and shaking his head at everything we ask him. He's also still snacking on everything. He likes his bananas, avocados, hummus, butternut tomato coconut soup, and of course his raw brownies (which Chris likes equally as much.)

I can't believe how fast the Christmas season has snuck up on us. I'm the queen of procrastination and Chris is the king, so we are just beginning our shopping tomorrow. Hopefully we'll get as much done as we can or as much as Joaquin will permit!

Tuesday, December 12, 2006

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.

Wednesday, December 06, 2006

In Control

No, we don't have our holidays mixed up, but we do wish we would have had this costume for Halloween! It was passed down from some good friends of ours. Joaquin's been growing like a weed lately and I had thought that we needed to get him some long sleeved shirts for the cold weather we have returned to, but I found plenty of them - along with a bear costume! We also found some little shoes that fit him now, as you can tell in the picture.

Since we've been home, I've been feeling better. I feel more relaxed and in control of our situation now that we're a good 250 miles away from the doctors. Don't get me wrong, they're all good doctors, it just feels good to be out of their clutches. Joaquin has been thriving even more since we've been home. He's getting very good at walking - I think he prefers walking to crawling. He's got two more teeth and he's working on another tooth.

He's a snacking monster lately too. He loves to snack on whatever we're eating, especially a little treat that I make: walnuts, dates, coconuts all put together in a food processor and then rolled into balls. They're his favorites. He's also a fan of bananas, bread, and veggies. I made a really yummy butternut tomato soup that he devoured. I'm a big fan of spicey things and Joaquin's made it very apparent to us that he's not into spicy foods, so that's one thing I've got to learn - to tone down the spicy.

We go back down to Palo Alto on Sunday because not only do we have a clinic appointment, we also have a xenopax infusion. The xenopax is only an inpatient thing and should be done with in a few hours. The only thing about it is that they have to place an IV and that can sometimes be tricky with Joaquin.

As far as everything else, Joaquin's been doing good. His Prograf levels have been low and we're not sure why, so we've been doing the blood draws liberally - as in every day. No fun, but must be done. We've found two phlebotomists in town that do a relatively good job drawing blood from a little guy like Joaquin. I'm hoping that soon his Prograf levels will decide to settle into something more consistent so that we don't have to do blood draws (almost) every day. Sometimes I feel down about doing blood draws every day still, but then I realize that after we do that, the day belongs to us. I don't feel like we are just waiting around to go back to the hospital or to clinic. And once we go to once a month clinic visits, I will probably feel it more.

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