Thursday, July 30, 2009

Update

Well, Keegan's still home and holding his own. I'd hate to think where he'd be right now without the hydration and calories he's getting from his tube...actually, I know where he'd be, and we don't want to go back. Being home is one of the few things he has going for him right now.

First of all, his intestinal symptoms have worsened. Still lots of output (7 by the time we put him to bed), stooling overnight again (hasn't happened since we were in Boston inpatient), and as loose as they were last fall (didn't you want to know?). He seems to be in more pain associated with the worsening symptoms, showing some behaviors he did when things were bad this winter (getting on his hands and dragging his head on the carpet, stopping playing to lay flat on his tummy for periods of time, and crabbier than usual). We went back up on his oral antibiotic that was started in Boston. We're not sure if the reduction made last week is contributing or not, but we haven't seen an improvement since going back to his old dose. We are trying not to jump the gun and worry about things that aren't pertinent yet, but his regression has us pretty scared for two reasons. The best case scenario at this point is that Keegan simply needs an even longer, slower wean of the antibiotic than we thought. I'd like to think that is the case, but Keegan's intestinal issues were worsening before we made the most recent cut in doses. Still, it could be a temporary setback.

The other two possibilities are more difficult. One is that the vancomyacin is working, and he won't be able to stay stable without it. That's bad because he can't stay on it forever - it is a very powerful antibiotic, and it is used to fight some really dangerous, highly resistant strains of infection. Keegan is already susceptible to life-threatening infections, ones that would be easy for healthy people to fight off could kill him, not to mention ones that are dangerous to us all. We can't afford to let him develop a resistance to such an important antibiotic. Since we don't know why the vanc seemed to work for awhile, we don't know what else might help either. The other possibility is that the vanc really didn't work and was a coincidence with a temporary improvement, probably due to time and the special formula he's now being fed. If that's the case, it's obvious that the formula alone is not enough to sustain improvement. Again, the end result is that if we don't know what's truly wrong, we don't know how to help it get better. Hopefully, I explained that well enough that you sort of understand our dilemma. If either of these possibilities are true, then the best guess is that Keegan's intestines are simply too damaged or underdeveloped to process food like normal intestines would. There's evidence, however, that intestines can adapt and work better over time...lots of time.

The other issue addressed this week was Keegan's g-button, which was leaking a river. Wednesday, Keegan had a fluoroscopy study to check for tissue build-up in his stomach that was causing formula to be pushed out instead of in. The study didn't show anything abnormal, so today we changed his button to a different type. We'll see in a few days if that helps or not.

Other than that, his blood pressure has been low for a few days, and he's looking rather pale. The first thing Gray said when he walked in from work this evening was had he looked that pale all day. When his transplant coordinator called to check in today, she agreed to let us watch him over the weekend. If he continues to look pale or suffer lower blood pressure than we're used to, we'll rerun labs on Monday. We're praying that's not the case.

Now, lest you think we're all gloom and doom today, Keegan still laughed at his Madagascar movie this afternoon during speech therapy, and he did really well at occupational therapy this morning. Well enough that we're reducing his OT to once a week. See? Good news!

Thank you all so much for continuing to pray and support Keegan. We also appreciate your prayers for Hannah. She is still fighting but has a long road to recovery. Lastly, be sure to check Keegan's photo site in the next few days - got some great new pics to add! Thanks again, and have a great weekend.