The Oncologist came in today and said "Can I talk to you outside for a minute?" My heart sank. When a doctor pulls you out of the room to talk you know its not good, I have had too many of those talks, but to my surprise it was a good talk. She said she was thinking about Skyler and wanted to get him home for Christmas. My reply was "What?! Are you kidding me? Home?! You cant be serious." Haha you should have seen the look on my face. She was actually very serious and really wanted to find a way to get Sky home for Christmas. She said she could wait on his chemo this week and do it next week, we could come in once a day and get a platelet and blood transfusion, and she could send an oxygen tank home with us. A million and a half things were going through my head when she was saying all this. Will I have time to sanitize the whole house? Will I be able to handle all his needs from home? Would he get a new infection being home? How will a wheelchair fit into the car or our house? Can I really leave the safety of the hospital setting and risk getting sicker and ending up in the PICU again? Even the thought of going home right now scares me to death, so as much as I would have liked a Christmas at home I decided to stay here. We would have had to get admitted again after Christmas anyway. I know some of you are thinking "How could you pass this up?" but I just couldnt risk it. I need him to get stronger first and to not be dependant on oxygen. I also couldnt stand the idea of holding off on his chemo for another week when we have gone so long without it. I will sacrifice ANYTHING to get Skyler healthy again, even if that means spending the next couple of years in the hospital if it comes to that. We will just have to make Christmas in the hospital as fun as Christmas at home. Im just glad that we get to have a Christmas together. Some people thought that he wouldnt even be here for Christmas, so to be able to spend it with him up on ICS is a miracle. Im really grateful for the doctor for thinking of Skyler and having her willing to do all these things so he could be home though. That was very sweet of her.
Overall Skyler is still improving. Improving slowly, but still improving. The levels that show how his kidneys are working are coming down. This is so great and it has shocked the doctors. They were expecting him to be dependant on dialysis for the rest of his life, but here he is going on a week now off dialysis and doing great. Today he is a little more puffy and his weight has gone up a little, so they are going to slow down on the weening process of his diuretics that are helping him pee. And hopefully since his numbers are going down his kidneys will start to work better and he wont have to be on diuretics at all.
His bili is still going down too. This is a reflection of his liver function so Im so grateful that it is going down. He is still yellow but not nearly as bad as he was. They have to hold off on one of the chemo drugs that he is supposed to be getting because his bili is still too high, but hopefully it will keep going down so they can eventually give it to him. It scares me that he isnt getting the chemo that he would normally get. I would just hate to get all of his other problems better and then have his cancer come back. That would be truly devastating.
They are taking his central line out that is behind his knee today. Hooray!! That means the only access he has left is his dialysis catheter, and since they can use that for all his meds they dont need the other line anymore. So one less infection risk gone! At one point he had 17 tubes going in him at once and now he will just have one (well he will still have his feeding tube) this is amazing. Im just so happy things are starting to look up. I love this feeling of hope. I love that I can actually picture him having a future and it may actually be possible now. All odds were against him but yet he made it this far. What a fighter he is!
Skyler spirits are starting to coming up. He seems to be happier and he is back to his cute, funny little self again. Im loving seeing personality shine through. Today we played catch with a beach ball for 45 min. He was laughing and smiling the whole time. It was pretty cool. Its little moments like these that will be etched into my mind forever.
Hooray for no more of these dressing changings behind his knee!! He hates getting this one cleaned.