Revival of the Purple Sling

Early Monday morning we woke up to get ready to go to the hospital for blood draws and clinic appointment. The walk over to the hospital in the morning is always very nice because the weather is cool and I always feel like a brisk walk is a nice way to start my day.

The appointment was fine; nothing new, just a few medicine changes. He is on Lasiks, which helps him pee - and by the weight and swiftness with which he wets those diapers, he doesn't need much help. His creatinine has gone up a little bit, but they think it's because of the Lasiks. Every time we go in they back down on the number of times we give it a day. When we were first released from the hospital it was every six hours, then it was every eight hours, then it was every twelve hours, and now it is one time a day.

Monday we also had another xenopax infusion (the anti-rejection med that he's given over 9 different treatments in the day hospital). I don't know if you remember the last time we did the infusion - it was a nightmare. Well, this time they said that the infusion would take 15 minutes and then he would have to be observed for 30 minutes. I was a little shocked as I had prepared myself for the infusion itself being around an hour and I asked the nurse if this time was different and she looked like she didn't have any idea of what I was talking about. She said it's usually always like that. I don't know what was up with the nurse we had that day, but Mom said that she remember looking at the machine that was dispensing the medicine and that it would say that it had about 10 minutes left, the nurse would come in and mess with it and when Mom would look at it again it said 15 or 20 minutes left. We think she didn't know what she was doing.

Joaquin also had to have his PICC line redressed because it was just down right nasty looking. I walked into the room after talking with Chris for a long time and saw someone redressing it and I was about to remind them to please be very careful when I noticed that it was the nurse who had actually taught us how to care for the PICC line and I instantly felt at ease. And the thing is, she did it by herself when every other time I've seen it redressed there are two nurses there, one to change the dressing and one to hold Joaquin down. She did such a great job - she definitely knew what she was doing. Finally! We get someone who knows what they're doing!!

We are still riding the Prograf rollercoaster, though. His Prograf level has been steadily increasing and today it was way too high - 19.5 when they want it between 10-12. He was on 4mLs and I think that is too much. I'm betting that they'll settle right around 3mLs. Part of me wants to say that I feel like it will be 3mLs, but really what do I know? I have to figure they have a method to their madness.

Today I was talking with a mama who is staying here at the RMH with her teenage son who had a kidney transplant on September 11th. Looking at her son walking around I would have never guessed that it had happened so recently. She said that they were just going about their business on Sunday the 10th and that night they received the phone call from the hospital saying that they needed to pack for two months and leave in an hour. The next morning, Monday, he was taken into surgery. I talked to him a little bit about it and asked how he was feeling. He shrugged him shoulders and said he felt "good," and I asked if he felt better than before and he said he definitely did. Every day he is required to drink 4 liters of water over the course of 14 hours. She said the kidney he received came from a 220 pound man who was 6 feet 5 inches tall and that when he is standing up you can see the outline of the kidney through the skin on his abdomen. He's a pretty skinny kid, though, from a restricted renal diet. It was interesting to compare our experience with the mama of the teenage boy - similar except the age difference.

Every day it seems like Joaquin is eating more and more. Before transplant he would try things, but he would just push it back out. Now he eats and then swallows it! We are so proud of him. Last night he ate almost a whole polenta patty by himself and when we made burritos later he snacked on some refried beans and loved them! He was bouncing up and down in his high chair and pointing to the beans. He's also a big fan of Veggie Booty, Snapeas, crackers, bread, fruits, steamed broccoli... Pretty much anything. Whenever I go to the kitchen to grab something to snack on, he's gotta have something too.

Another minor milestone for us is that I've been feeling good enough to carry Joaquin in the purple sling. And I love it. The way that he sits on my hip and wraps his little arm around my arm seriously makes my heart melt. Tonight he was sleepy pretty early because he didn't nap too long this afternoon and he fell asleep in the sling. Even though he was getting heavy, I didn't want to put him down because it felt so nice to have him sleeping in the sling and to just have him that close to me again.