7-1-16

Drew woke up yesterday not feeling as well as the day before. He ran another fever, was having a lot more diarrhea, and was obviously in a lot more pain. Most likely from the worsening sores, or mucositis, in his GI tract. He was pretty sad. So as the situation changed, we had to change our game plan to compensate. The doctors decided to switch to IV morphine from oral oxycodone and Tylenol for the pain thinking that things were moving so fast through his system that the meds probably weren't being absorbed properly. We also switched him to IV nourishment, TPN, and backed off the tube feeds so not so much is moving through him to help with the diarrhea, and so there isn't so much irritation to the sores. With the development of the fever, they drew cultures again, and started a more broad antibiotic to cover gut bacteria too since those open sores in there are being exposed the fecal matter, in the hopes of preventing infection. All these changes seemed to help, and he slept for over 3 hours in the afternoon! Overall none of what's going on is concerning to the team, it's all "par for the course" they say, but what they are concerned about is managing his pain and nausea/diarrhea. I am encouraged by the good nap yesterday, and decent night of sleep last night, thinking we are accomplishing those goals. We'll see how today goes. He gets *daily* (whew!) baths with an anesthetic solution, and are doing lots of hand washing and disinfecting while he's the most vulnerable without any immune system. His counts are really low, in addition to his white count at zero, his platelets were low today too, so he's getting a platelet transfusion as I put this together. The nurse changed the dressing on his central line yesterday, and said it was the easiest site care on a two year old in her 18 years--nice for a mom to hear! The angry, uncooperative Drew is mostly gone, and it's nice to have our lovable guy back. Our prayer is that our adjustments keep him comfortable, and nothing grows in the cultures being taken ( was running another fever this morning). Thank you all for your encouragement today and prayers! One more day down!

Josh will be here after work today, and I am going to get a much needed break this weekend after being here since Sunday afternoon. I am so excited to see Molly today, I haven't seen her all week since she was in Ames following Corn Carnival, I really miss her! Going several days without seeing her so often these days is unfortunately just how it has to be, but it doesn't mean it's easy or that anyone likes it. I cry every time she cries when we say goodbye. She's never had separation anxiety--even at 18 mo old, I could leave her anywhere and she'd be fine--so it's hard to know how much this effects her too. Don't forget to keep her in your prayers too! How wonderful the day will be when we can all be together at the same time, all the time!!

"We are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not foresaken; struck down, but not destroyed"!!

~Heidi