Biopsy Findings -- 1B Rejection

Owen's biopsy went well and had a quick recovery (as always).  We were discharged before noon and I pushed him around the Stanford shopping center for a while.  The weather was perfect, sunny and breezy.  Owen insisted on buying peaches at the Farmers Market and that's all he wanted for lunch.  We headed back to our hotel for some Sprinkles cupcakes and Spongebob.  I convinced him to venture out to grab pizza for dinner and we called it an early night.

This morning we had a nice long clinic visit  with Dr Rosenthal and Nancy. The best news of the day is that Owen is up to 21.5kilos (47.3lbs) and 122cm (48inches). He is FINALLY surpassing his plateaus and growing thanks to 2200 cals/day.

His preliminary biopsy results came back with a score of 1B... he has been 0 and 1A before, but never 1B.  The pathologist was staining the slides and looking for AMR (antibody mediated rejection) now as well, which is usually the cause of a 1B score.  They are letting us come home so it's not something that is immediately dangerous, but SO glad we did this biopsy or we wouldn't have known about it.  Regardless, we will most likely need to return in a month for another biopsy.  If it is AMR, we will need to do some more extensive antibody testing and I pray we don't have to start IVIG again.  If you remember, we did IVIG monthly for almost 2 years (15 months pre transplant and then about 8 months post).  We will know more in the next couple days.

His echo looked the same (not terrible, not great) and his pressures in the cath lab were good.  He still has the elevated HR (135-145) and so we are going to push the Carvedilol dose up to 25mg/day.  We discussed starting Digoxin, but decided against it.  His ANC *neutrophil count is low (just under 300) so we may need to tweak some meds and just watch him for infection.  His Prograf and Sirolimus (anti rejection  med) levels were within range for the first time in months.. they have been so high!!!  We will redraw labs Monday to check his CK (creatine) levels before starting him on a statin (to potentially help CAD). 

Aside from all the medical jargon.. I loved when Dr R said.. "I hope to be having this same conversation a year from now.. even two years from now."  While we are pretty sure his heart won't improve at this point, we hope to prolong the inevitable (retransplant).  I feel like we just need to enjoy the moment that we are in and that things are relatively okay.  We all know that things can change in an instant.

After our clinic visit, Owen got to experience the six minute walking test.  They took BP, O2 and HR before his walk and again afterwards.  He was exhausted after walking six minutes straight.  I can't tell if it's cardiac exhaustion or if it's just overall muscle deconditioning.  With the help of a little Green Day on his iPad, he walked without complaining and got the job done. ;)

We are now at the airport enjoying more cupcakes (not me.. those other two are for Logi and Kam!)  I'm OCD so we get to the airport WAY too early every time.  Thank you for all the prayers and I'll update again in the next 48hours when I hear the final biopsy findings.