Thursday, May 03, 2012

Day +26

This week has been really busy and stressful.  Jacob developed a rash all over his back earlier this week, which considering the timing post BMT, was probably GVHD.  Luckily it cleared up within a day using a tacrolimus ointment called ProTopic.  Jacob has also completely stopped eating and drinking.  He throws up at least daily and often tells me he feels like he needs to.  He is still getting anti nausea medications, but they are not strong enough to help him.  He also has really bad incontinence.  The doctor suspects GVHD in the GI tract, but will not begin treatment for it until he has an endoscopy and biopsy tomorrow to confirm the diagnosis.  The biopsy results will be ready on Saturday.  I've requested a NG tube be placed during his endoscopy tomorrow since he will already have to undergo sedation.  I figure that will spare him the trauma of having to do it while awake.  I hope it helps.  We have to battle over trying to get any oral medications in him daily.  Another issue that has come up is he is hypertensive, most likely caused by all of the medications that he's on.  He's taking blood pressure medications to try to get it under control, but they don't seem to have found the magical combination yet.  Another stressful thing was that within a week, both lumens of his central line needed to be repaired.  They basically cut off the old one and glue on a new one with a little cuff that connects them together.  The line goes out of commission for 24 hours while the glue dries. Luckily they didn't break at the same time, so he had one working lumen at all times.  They are both up and running again.  The doctor  predicts that once Jacob starts his low dose steroid treatment for his GI GVHD, that he will bounce back quickly with his eating and that we could be discharged as early as next week.  I'm really hoping that is the case.  Hospital lifestyles are grueling and I'm feeling it.  I'm sure Jacob is, too.  The chimerism test to show what percentage of donor cells are Jacob's will be performed tomorrow.  The results will be in some time next week.  We continue to pray for 100% donor cells.  I think I covered all the major things from the week.  Jacob has his good days and bad days.  He enjoys music therapy, speech therapy, physical therapy, his nurses (sometimes), and hospital volunteers.  Thanks for your continued prayers and for the care packages and cards.  I'm sorry I have not thanked everyone individually.  I'm juggling everything on my own right now and it is difficult to even fit in the basics, like showering, sleeping, and eating.  But please know we are grateful for the kind words and fun things to help pass the time.  We feel loved.

Jacob wrestling with his Spiderman balloon

Playing with his dolphin

Cruising the halls

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