8-24-16

Wanted to do a quick update to share what we learned today. They identified the bacteria causing the infection as Stenotrophomonas Maltophilia. Apparently it is kind of a surprising bug for Drew to have. They are saying it is common in patients that are on ventilators in hospital settings, so suspect he picked it up during one of our hospitalizations somehow, and it's just come out now. It's good news and bad news. Good because apparently its not as aggressive, or doesn't make you as sick, as some of the bacteria they were more expecting to see; but bad because it is pretty resistant to antibiotics. They don't think the ones we were on were probably covering it at all, so they are glad that he is doing so well. We started him on the two antibiotics that have a good chance of working, Bactrim and Levofloxacin mid day today. So in the next couple days we pray for blood cultures to start coming back negative. They are preparing us for the possibly that his central line may have to come out sometime soon if the bacteria is found to be on the line. Please pray that these antibiotics work, and that this infection clears without having to take out his line!

On the transplant/chemo front, Drew continues to show signs that mucositis is really taking hold. Bad diarrhea, mucus-y vomits, and sores in his mouth already. Since everything is running through him or coming out so fast, we are thinking the pain meds aren't getting a chance to be absorbed. So we made the switch to IV pain medicine today--dilaudid (an alternative to morphine) and tylenol. We also stopped his feeds again, and will most likely start up TPN, or IV nutrients, later this week.

I am back home with Molly now, Josh has tomorrow and Friday off and is taking his turn over in Rochester. Depending on how things turn out, the plan is for Josh's dad to stay with Drew over the weekend to give us a break together. It's probably pretty obvious, but it was a another hard day. It is so emotionally exhausting to watch your child be so miserable and to worry about what is going on. But once again, God reminded me of my "battle cry" from last transplant from 2nd Corinthians 4, "We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed...So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal."

~Heidi