Saturday, October 12, 2013

The road to recovery...

My big guy is back! Parker has slowly but surely returned to his big, bold personality. As of last night, he was finally awake, coherent, and his usual charming self. Actually, I should say he was back to his "party animal" self. I fell asleep around 8:00 last night out of exhaustion, but around 10:00 I was kindly kicked by my husband, which woke me up out of a dead sleep. In his defense, it is absolutely not his fault! See, in the ICU they only have one sofa that is smaller than a twin bed. Usually, only one parent stays with the child, but we convinced them that we could both fit on that one sofa, so that we could both stay. We've used our ingenuity to make the sofa a little longer, but it's still a very complicated process to get us both on and to sleep in that position, since it's not very wide. So, when I woke up around 10:00 from my "love tap", I looked over to check on Parker and he was awake and staring at me. This took me by surprise at first, because he's been in and out of sleep all day, but usually when he wakes, it's in a fit of pain. The fact that he was awake and calm was startling, so I jumped out of bed. I got to him, and started rubbing his head and talking to him. Eventually, he started reaching towards his Ipad in an attempt to tell me that he wanted to watch his cartoons. I set him up with Disney Junior, and he was as happy as could be. It was 2:00 when I eventually dosed off. I couldn't keep my eyes open any longer, and he was still watching Toons.

When we woke up this morning, he was just waking up. He is starting to growl like a tiger, which he did before. He screams "Momma!" when he wants something now. It feels SO good to hear that. He hadn't said anything since before they took him back for surgery. He is not happy that he still has "no-no's" on his hands from the IV's. He wants to be able to hold his IPad, and press the buttons himself, and he can't. His pain still isn't quite under control. They have been giving him a continuous drip of dilaudid, but have had to give him quite a few "rescue" doses in between when he goes into fits. The pain team rounded this morning and decided to increase the dilaudid drip in an attempt to reduce the rescue doses. They just made the changes, so hopefully it helps. We had about an hour of screaming and crying just now, but in his defense they were poking and prodding him. They gave him a rescue dose to help, but he is fighting it. He will dose off, but then wake up fussing just minutes later. They had him on his back, so the nurse and I just worked together to shift him to his side, and it seems that may have been the problem. Parker has never been a back sleeper.

His Super Kidney, which we are still trying to name, is doing fantastic! His creatinine is holding steady at 0.2, which is near perfect. He is making tons of pee pee. His electrolytes, like his Potassium, Calcium, and Phosphorous are slowly starting to control themselves. His blood pressures are "stellar", and the doctors continue to tell us how pleased and impressed they are with his kidney and his progression.

The plan for today is to repeat labs this afternoon to get a good idea of his prograf and Tac levels. This tells us how well his anti-rejection medicines are working, and also tells us what changes we need to make. They have been telling us since before surgery that it would be a trial and error for a few months to get these numbers just perfect. There is a narrow window that we are aiming for. Too much of the medicine is toxic, and too little of the medicine leaves his kidney vulnerable for rejection. Once we get labs done this afternoon, they are going to remove his arterial line. They said there is no need to have continuous blood pressure monitors anymore, because his have been doing so well. One less line, means one less chance for infection. It's a step in the right direction. If all goes well, she said they may also take out his central line tomorrow. The doctors have told us to plan to be in the ICU through the weekend. In her words, "Knock on wood, we can aim to go to the floor on Monday". We aren't in any rush. It's a catch 22, because we have to leave the ICU in order to progress to getting him home, but in the ICU he has one nurse that is just for him. She is right outside of the door at all times, and is in here in a split second. We like that. On the floor, he will have a nurse that is assigned to multiple patients and is running around trying to tend to all of them. It's not his/her fault, but I think right now Parker would be too much for them to juggle. Hopefully by Monday, he is in a better place and will not need the one-on-one care.

His donor, Patty, is doing great! She came to see us yesterday and seemed really good. Her color looks great. She wasn't swollen or puffy from surgery anymore. She was able to get up out of the wheelchair and see Parker. He was knocked out at the time, of course, but it gave her a huge relief to see him and see the pee pee. I spoke with her briefly this morning, and she was eating breakfast. Still in some pain with soreness, but that is to be expected. If all went well, they were considering releasing her today. I haven't heard an update on this, yet. When she does release from the hospital, her and Aunt Linda will return to our apartment to get some rest. She has to stay in the city for about 2 weeks for her check-up and then she can return home and follow up with her primary care physician and the nephrologists at Tulane Hospital. She is one amazing woman. I still can't get over her generosity and selflessness, and to top it off she made it seem like a breeze. We love her

This is Patty immediately after surgery in recovery.

This is Patty on Friday morning..

This is Friday afternoon after lunch..

1 comment:

  1. When I read the blog about Parker getting a kidney, it was like a weight was lifted. I don't get to see you guys often but I pray for you, Jason and Parker often. Much love to you guys and remember, God only gives special children to special parents.