News from Friday

Today Tom and I celebrated our 22nd wedding anniversary! Where have the years gone? I guess it must be true....time flies when you're having fun! There have been some challenges sprinkled in with all that fun over the last 22 years, but God is good and He continues to bless and strengthen our relationship. I love you, Tom!

Hannah stayed with Samuel while Tom and I spent a few lovely hours together. Samuel asked me to be back by 10 p.m. It is the first time I have left his side since this all began. Leaving him in the hands of Hannah and an especially great nurse made it a little easier.

It seems Samuel had a roomful of visitors to entertain him while I was gone! Praise the Lord, it was just the distraction that he needed after this afternoon's discouragement of having two peripherial IV's placed....one in each arm. Ouch!

There was no discernable sinus infection to be seen on yesterday's x-rays, so today the PICC line was moved to the top of the suspect list and the docs wanted it to be removed. Rats! The usual policy is to establish new venous access before removing the old. The new IV's went in just before I left on my date with Tom. The docs wanted to wait until I was present before removing the PICC line, so when I returned at 10 p.m., the IV nurse came and took it out. It was not a fun experience for Samuel. The tentative plan is to put in a new PICC line once he is afebrile (without a fever) for a couple days.

Despite some heavy duty doses of antibiotics, Samuel managed to have a fever again this morning. By late afternoon, his temp was down and he was feeling a little better. By this evening, he was perky enough to really enjoy his visitors.

Today's new surprise is that Samuel's white blood cell count is now too low! The docs aren't sure what that is about, but are making some adjustments to several of his medications.

Samuel's creatinine is back up to 2.50, but knowing that it was once able to get as low as 2.15 gives me hope that he'll get there again.

Prior to Samuel's surgery last week, his tube feeds were running 24 hours a day. When the tube feeding was restarted a couple days after last week's surgery, the plan was to run the feeds for only 12 hours in hopes that Samuel would get hungry and eat more on his own. Unfortunately, the fever has increased Samuel's nausea and decreased his appetite. The nutrition team decided today that he is not getting sufficient nutrition and the tube feeding time has been increased to 20 hours a day. Assuming his tube is functional......

I started writing this post at 11:45 p.m. It is now 4 a.m. I am still up because one of Samuel's midnight meds (that gets put down his feeding tube with a syringe) has clogged up the tube. The nurse has been working without success to get it unclogged. She tried putting Pepsi down the tube in hopes that it would eat away the obstruction. When that didn't work, she called the transplant team. The resident on call suggested that she try Coke instead. He said that it is known to work better. And people drink this stuff?? No success yet. The resident is supposedly coming to check out the situation as soon as he is done stitching up someone in the ER. Meanwhile, the "food" has been disconnected. Presumably, they'll leave it be for tonight and will sort it out tomorrow. I'm going to try and get some sleep.