Friday, August 31, 2012

Day +146 still here

It's 4:17am and after several futile attempts at getting Jacob back to sleep, he is now looking at books in his bed. We are hopefully getting discharged today, not that he's necessarily doing a whole lot better, but at least the pneumatosis is all cleared up. I just changed 5 diapers in the last hour, which is pretty much how it's been throughout the day time hours as well. After all the tests and procedures that have been run these past two weeks, Jacob came back negative for gvhd and is now up to 100% engraftment with his new donor cells. All respiratory and blood cultures came back negative for infection. Even the rhinovirus cleared after 5 days and never caused any symptoms, thankfully. The one thing that was discovered after his million dollar work up however, was a positive pcr result for the cursed adenovirus on his gut biopsy. Visually, his gut looked perfectly healthy throughout, but pcr's are incredibly sensitive and picked up some residual past or present virus. Given the toxic nature of the treatment, both our dr here and the Seattle doctors don't want to treat at this point. Our Seattle doctor has a child in renal failure because of cidofovir, the drug used to treat adenovirus. Jacob has already had to be on that treatment for several weeks back in June and July when his blood adenovirus count was up to 9 million. For now, it is negative in the blood, respiratory system, and stool, so we are just going to sit tight and hope he can keep it under control. Being off steroids will hopefully help. He gets to start tapering off his other immunosuppressant around September 18th if there are no signs of a gvhd flare.

Because of Jacob's anorexia, we are going home on 16 hours/ day of tpn. It feels like such a huge step backward. With all the diarrhea, disinterest in food, and dependence on tpn, it feels like we are back at the beginning. I have to remind myself of the big picture: Jacob successfully engrafted his new cells, which is the reason we went through all of this in the first place. It's just hard to get to a point where I feel like I can actually rejoice in that because we are constantly having setbacks. Jacob started an appetite stimulator yesterday and ate a little in the morning. We had also been running a very slow formula feed through his ng, but he started complaining of nausea, so we stopped it. Getting food into his tummy seemed to backfire with a day of non stop diaper changes.

Jacob is back to sleep so I'm going to try to sleep some as well while I have
the chance.


Wendy said...

This all sounds exhausting to say the least! What a long's hoping that being at home will make things a little more comfortable for you.

JuLi said...

Kylene! your poor little boy... I don't even know what to say, i just want you to know that were here for you, and there for you. not physically, but definitely in thoughts and prayers.