Holiday

We finally made it out to the ocean and it was beautiful and relaxing. It was only about sixty degrees there and it was overcast, as you can see in the pictures, but it was great. Joaquin saw the ocean, pointed, and said, "wawa." Yup, that's right, that's a lot of water, Joaquin. There were birds flying around and some were perched on the rocks. Joaquin pointed to those and we practiced saying "bird." As we drove back through the valley in between the hills that separate the coast from the metropolitan areas there was an actual place where the fog stopped and it was bright and sunny. Looking back I could see the fog hanging over the hills and tapering out to where it met the warm air.

Although the post will probably say that this was written yesterday, I'm actually writing on Sunday night. This morning was the first time that we didn't have to go in and have Joaquin's blood drawn because his Prograf levels were right in the targeted range of 10-12. If they see two days or more of the Prograf at the levels they like, then we have a "holiday" from blood draws. So we all got to sleep in this morning. It was a nice break and a pattern I'm hoping to see stay this way.

Last Thursday at clinic I was asking Amy when she thought we'd get to the point where the Prograf level would remain consistent and we wouldn't have to be doing blood draws daily and she said that with babies they fluctuate and in older children they see them level out sooner. They're not really sure why, but that just seems to happen that way. In Joaquin's transplant manual it states that we would only have to be doing daily blood draws for the first 2-3 weeks post transplant, but we have passed that time. It's not like it's a big deal. Usually we just get up around eight o'clock, get ready, start walking over to the day hospital at nine o'clock, get about ten or fifteen minutes later - it's a nice morning walk. Joaquin still has the PICC line in his arm, or the line that is in his veins through which they can draw the blood without having to use a needle. It's almost a luxury.

Every week the dressing must be changed. The dressing consists of a little foam disk about the size of a quarter that goes over the place where the line is inserted into his arm. Over that there is a big piece of plastic to keep every from being exposed from the elements of babyhood. Every time they change it, because we are not able to, they end up pulling a little more of the PICC line out of his arm. Once it's pulled it can not be pushed back in like you would think because it's been exposed to germs and to push it back in could cause an infection. I'm hoping that it will last a little longer or that his blood draws will lessen. I'm not sure what they would do if it came out - if they would put it in, which requires him to be sedated to remain absolutely still, or leave it out and obtain blood draws using a needle. Right now it's nice because it's quick and simple and no needles are involved.

Joaquin's appetite has been great. He's eating more and more. They backed off of his fluids by 240mL recently and since he's not getting formula anymore I think he's actually experiencing hunger. Plus, I've been told that people who are on dialysis and whose creatinine is high because their kidneys are not working (remember Joaquin's creatinine was around 4 before surgery) do no have much of an appetite - food just doesn't taste as good. The more that he eats, the more nutrients he is getting and the sooner we can work towards our goal of having the NG tube gone.

Right now the NG tube (NG stands for nasogastric which means it goes through his nose into his tummy) is supplying him with constant hydration. Since he got my whole kidney he needs to receive enough fluids to maintain optimum kidney function. As his body adjusts to the kidney and he eats and drinks more, he will need the NG tube less and less. So, he's going to have to have it for a little while longer, but it's important to his health and the well-being of his new kidney. He had the NG tube when he was on dialysis because the whole process of dialysis can dehydrate him, especially babies. Before surgery he was on constant hydration over the course of the night and had a few bolous feeds (where he received around 100mL over the course of 15-20 minutes). He was also drinking lots of water. He doesn't drink so much water right now because the constant hydration he receiving right now does not leave him feeling too thirsty.

This week ahead looks as though it is going to be a mellow one as well. We have clinic tomorrow and again on Thursday. Depending on what his labs look like, we might have another "holiday."