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January transplant/liver clinic

     Kinley had her transplant/liver clinic on Wednesday, January 8th.  She has been doing pretty well and everyone was very pleased about that.  She continues to grow and is now over 29 lbs and was 33 1/2 inches tall.     

     The size of her liver and spleen measured the same as her visit in November, so although it is enlarged, it wasn't any worse.  We discussed how her platelets have dropped and that is a sign of Portal hypertension which we are already aware of. Because of her increased pressure in her portal vein, Kinley is at risk of having varices around her esophagus, stomach, and intestine. Those are smaller blood vessels that end up carrying a large amount of blood since the blood does not flow through her liver like it should. Sometimes these vessels leak or rupture and bleed out which could be life threatening.  They want to schedule a scope in the next few months to look and see if this is becoming a problem or not. There are some things that they can do to try to prevent these bleeds, but they did say that they will only be able to see the ones around the esophagus and if or when they become a major threat, it will be time to talk about reactivating her on the transplant list.  With that being said, they do not believe she is at that point yet, it is just something we will watch.

     Dr. Weymann listened to Kinley's heart for a long time.  Last time we were there he said he heard a slight murmer, so I thought he was listening for it again.  He said that Kinley's heart sounded really fast.  I told  him about one night when I put her to bed and went back in to check on her once she was asleep. I could see her heart beating so I put my hand on her chest and I had a hard time counting the beats because it was fast.  I went to grab a stethoscope and when I listened to it, it was slower so I thought maybe I was just not feeling it correctly. He said it was possible that Kinley's heart could be over stressed because of her bad liver and wanted her to have an Echocardiogram.  He said that usually when the heart is too stressed it will have a "gallop" sound and he didn't think he heard that, but wasn't sure. She had the Echo and it was good. It did show that she still has a small PFO which is a small hole in the heart that should have closed as an infant. The PFO had shown up on an Echo she a little over a year ago and it is smaller now, so they are not concerned about it. They decided that the episodes of Tachycardia are not anything to worry about either. Her heart seems to be in good shape.

     Her labs were again, not good, but stable.  Her vitamin D is pretty low and we adjusted her meds because of it last time we were there, but the team is going to discuss it and get back to me with a plan.  Ugh, the Vit D med is Kinley's absolute worst medicine.  She sees it coming and shakes her head "NO!!"  Poor girl. 

     So, overall, Kinley's condition remains stable. We do have some things to watch as we always do. The plan is still to hold off on transplant as long as she is doing well, and reactivate her on the list when we start seeing signs of a decline in her condition, or if the risks of keeping her liver start to be higher than the risks of the transplant. We are still hopeful that transplant could be a little ways off because she seems to be doing so well. She definitely amazes us and her transplant/liver team!!