Moving Along

Today Cathy, she's the transplant coordinator, came into the room not too long after I arrived to Joaquin's room. She put up a chart on the wall the listed all of the medicines that I will be learning about and giving Joaquin. There are about seven, maybe a few more. Sounds like a lot, but they are given in the morning and at night, so not too many. Before transplant we were giving him around seven medications; the nice thing about these is that by around six months we will be down to only two. That will be nice. The remaining two medicines are prograf, the anti-rejection medicine, and cellcept, the immunosuppresent medicine and those will always be a part of Joaquin life.

This coming Monday Joaquin's super-pubic catheter will be removed as well. And Cathy said that we would have to come back to have it removed - if we are discharged. Yup, you read it right, we could be discharged as early as this week! I had never thought it would be so early, but in the back of my mind I knew it could be a possiblity. Why keep a kid in the hospital whose mama can do all the work the nurses do and where there's lots of sick people? They know that the hospital is not the best place for him once he's stable enough. They want him out as fast as we do and now that his urine is clear, there's really not much more. Plus, we'll be in the Palo Alto area for around 100 days, so they can keep an eye on us. This is all going to go so fast, like I had hoped.

Tonight I arrived back at the room after I went back to the Ronald McDonald House to make a stew for Chris and as I entered the door there was a sign that said: "Contact Isolation." What? I entered the room and asked Chris if he knew what the sign meant. He didn't even know it was on the door. I stepped out of the room and asked his nurse what it was all about and she said that she would come explain it to us in a moment. Turns out that Joaquin's stools have been a little runny and they want to rule out the rotavirus (not sure if I'm spelling that right.) There's no medcine to be given for it, it will just have to run it's course. They don't know if he has it, they have to run a culture that will be back in 24 hours. What kind of irks me about the whole thing is that we were never informed of any of this. Why wouldn't the doctor who ordered this to be done come in and chat with us about what it meant and what might happen? I consider myself and Chris to be a part of his care team and I feel like renal team should do the same. I don't know if we're different than other parents, but we want to be informed and kept in the loop. I mentioned to the nurse perhaps his stool are runny because of everything that has been going on over the last week and all the new medicines and liquids and whatnot. And it sounded like that was something she was going to pass along to the doctors as a consideration. Now that I think about it, I wish I would have requested to speak to the doctor who ordered it. Tomorrow I plan to look into it more and address the issue.

On a good note, Joaquin's urine output has been beautifully clear. No pink tinge or anything! The prayers, healing energy and good thoughts are working! And Joaquin is getting more and more back to his old self that we love. He's playing and trying to sit up and pull himself up. I even went over to the bed and held him in my arms because so many of his lines and tubes are gone now. It's like we are moving ahead so quickly to discharge time. Today Mom and I went shopping for a little while and I bought him a new stroller - just a simple umbrella stroller but since we are going to be doing so much walking I figured we needed to invest. Thanks to Ma and Pa Ruiz for helping us with that purchase!

I've been feeling so much better as well. My side is a little stiff still and I have moment when it's a little bit painful, but today I went all day without taking any pain medicines. I even slept through the night last night without waking up to walk out my stiff, sore side. Sometimes it seemed like while my body was trying to adjust to this major surgery and all the anestesia and pain medicines being pumped through it, all of that was slowing down the healing process. Now that I've been able to significantly reduce my pain meds I feel like I am actually healing faster. It's a great feeling.