Day +75 Two Steps Forward, Three Steps Back

When all of this began, I never imagined we'd see July in the hospital, but here we are with July right around the corner and no end in sight. The past 10 days have been filled with a lot of ups and downs. Last Monday Jacob threw up his NJ tube so he had another one placed on Wednesday. He almost made it a week with that one, but threw it up this morning. He has been more willing to eat and take his oral medicines today since the tube came out. He understands that if he doesn't eat, drink, and take his medicines, then we have to put in another tube and for now that seems to be all the encouragement that he needs. He certainly looks a lot more comfortable without that tube taped across his face. I just hope he can get all the nutrition, fluids, and medication that he needs to be healthy.

This past Sunday was a really rough day for Jacob. He had tachycardia (an elevated heart rate), and high potassium (which can cause cardiac arrest) for which he had to take a terrible medication to cleanse it from the body, causing him to vomit and have terrible diarrhea all throughout the day and night. All of his numbers were off too, indicating that there were other problems going on. His stool and vomit were coming back positive for blood as well. Doctors decided to give him a blood transfusion since his hemoglobin was trending down anyway. After a restless night Sunday, Jacob didn't wake up until nearly noon on Monday. Luckily, he seemed to be back to his happy self again and the symptoms from the previous day seemed to clear... or so we thought. Although he continued happy throughout Tuesday, a couple of tests came back with bad news. First of all, we found out that he has an infection in one of the lumens of his central line (the lumens are the two tubes hanging down from the central line placed in his chest, and the IV is attached to one of the lumens), so he started on an additional antibiotic for that. Next, we found out that he tested positive for C. diff, a problem with the bad bacteria taking over the good bacteria in the gut. He is taking Flagyl four times a day, and unfortunately, it tastes really gross and without his tube in, he has to get it down on his own. C. diff is contagious so now we have to take extra precautions in and out of his room.

Other news we got last week that was terribly discouraging was that it appeared that he might be losing his graft. All the donor cells that tested so high in his body a month ago had dropped, some of them dramatically. The doctor ordered an NBT (nitroblue tetrazolium) test to see if his CGD was still cured despite the drop in donor cells. We got the results today and thankfully he still has 60% functionality of working neutrophils, which is enough to protect him from CGD-related infections. According to his doctors, he only needs about 10% donor cells to be protected, so 60% is plenty. However, this loss of donor cells did concern the doctors enough that they are weaning Jacob off of his immunosuppressant, afraid that it might be too weakening to the donor cells. As he comes off of that drug, hopefully his chimerism of donor cells will increase, or at least not drop any more. There is a chance of graft vs. host flare-ups while coming off of the immunosuppressant, but it's something that needs to be done to protect the graft. I would feel terrible if we lost the graft and put Jacob and our family through this ordeal for nothing.

There have certainly been more bumps in the road throughout this process than I ever imagined beforehand. We thought for sure that Jacob would be home by now, but with one problem arising after another, the doctors still can't say when he will be safe to leave. Thank you for your continued thoughts and prayers.