1 Year Anniversary of Riley's Transplant

Tomorrow is the 1 year anniversary of Riley's transplant so I thought I would re-post last year's post, but first I will do a hopefully quick update of the last month or so.

Since Riley's traumatic night, we did hire a night nurse who comes 3 nights a week. This has been a tremendous help. We have just this past week have been able to put Riley down to bed without him immediately waking up and freaking out. Still, a lot of nights he just sleeps in his chair.

We have been a lot less fanatical about Riley being around people, and even kids. We even had our good friends Shannon, Rich, Olivia and Ben Gonzalez come for a visit last weekend. Today. we even took Riley back to Hickory Valley Christian School to visit his classmates and teachers. We were really hoping this would have a positive effect on Riley. If it did, unfortunately we were not able to tell.

Basically, Riley has been having mostly good days, but for about a week, he has been having serious meltdowns about his clothes. These can last for hours and are no fun for him or us. It involves Riley taking his clothes on and off and yelling "give me clothes", and this cycle continues over and over again.

I could go on and on, but since I am trying to keep it brief, I'll stop and leave you with last year's post.

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Today is transplant day. The doctor called this Riley's second birth date. Joel was here for the night shift and said Riley did good through the night, but Joel didn't get much sleep because people were in and out all night. On my way in this morning, Joel said Riley was moaning and asking for me, but he had fallen asleep by the time I got here. That didn't last long. He has been complaining of his tummy hurting this morning and constantly moans when he is not sleeping. I'm sure his tummy really does hurt, but one time this morning, he told me it was hurting, so I buzzed the nurse to see if he could have anything for his tummy. Before she got here, he said, "My tummy really hurts. It feels like I can't do mouth care." So, when the nurse arrived, I told her I thought we were okay! At this point, Riley isn't even getting up to use the bathroom. Joel said he cleaned up 3 dirty pull ups before I got here, and I've done three since I've been here this morning. It is no fun - for us or for Riley. Riley kicks and screams the whole time I change him. I guess he wore himself out this last time because he is sleeping soundly now.

Riley will get a really big dose of Benedryl before the transplant begins, so he will probably sleep most of the afternoon. For those of you who don't know, the transplant (which should begin between 11:30am - 12:00pm today) is not surgery. I will post pictures later today, but everything will take place here in Riley's room. It is basically just a transfusion that will go through the IV into Riley's central line, and usually takes about 30 minutes. He may even sleep through it. Because we are participating in a clinical trial, Riley will receive a second dose of cells 4 hours after the first transfusion. This is a small sample that was taken from the original donor cells and manipulated in hopes of producing more cells faster. There usually isn't any nausea or vomiting with the transplant - that comes a little later. Riley will also begin needing blood and platelette transfusions. In fact, Joel said he received his first blood transfusion either during the night or this morning. The doctor said it will hopefully be a very uneventful day. We can expect there to be a certain smell in the room after the transfusion - we are told most people say it smells like cream corn, so I guess it could be worse! - that comes from something used in freezing the donor cells. Riley will not be able to smell it, just anyone else who enters the room. I'll update after the transplant later today.

For now, Riley is just very focused on his visit from Autumn later this evening and not interested in the transplant at all, which is fine. He has been kind of out of it today. When I got here this morning, he woke up and asked me if this was school. Then, he asked me if I would call that girl (sorry Gary) watching Indy and have her bring Indy to him. He over heard me telling Brian that I was going across the hall to see if there was any coffee, and he said, "Will you go see if there is any cream coffee to wake me up a little bit?" Every now and then, Riley gets flavored creamer mixed with sugar, milk and a "splash" of coffee, and this is what he calls "cream coffee". So, overall, just more of the same for now. I'll update after the transfusion is complete this afternoon.