Transplant Evaluation

Hi Everyone,
I wanted to give you all an update on how Kylee has been doing. Kylee has been doing well & is still slowly gaining weight. As of Sunday she was up to 11lb 12oz. So weight gain is still slow going. Both Dr Seibel (pediatrician) & Dr Blaufuss (pediatric GI @ MeritCare) have been talking & Dr Blaufuss doesn't feel like she is progressing like he would like to see by now. Her labs have been staying about the same for the last couple of times being checked & her bilirubin isn't going down as quickly as he'd like to see. One of her labs has continued to go up a little each time which indicates there is additional scarring & not proper bile flow thru her liver. Her spleen is also getting enlarged which indicates the blood isn't flowing thru her liver properly. So after talking with each other, Dr Seibel asked Dr Blaufuss when he would expect Kylee to need a liver transplant & he said his best "guess" would be by the time she is 1. Keep in mind this is only a guess & like Dr Seibel said kids sometimes do miraculous things so this is only a guess. Dr Seibel did also visit with some pediatric GI Dr's in Minneapolis who she knows (she did her residency at the University of Minnesota) & they also agreed Kylee should have a transplant evaluation done. Even though she is doing well now, they don't want us to wait & have her end up in a critical situation & then have to go through all the steps for a transplant. So we have her evaluation scheduled for Jan 27 & 28 2010 at the University of Minnesota in Minneapolis. We will be meeting Dr Nissa Erickson who is a pediatric GI Dr & comes very highly recommended. I was also told by the transplant coordinator there that the surgeon we will be meeting is one of the best in the country. It doesn't put my mind at ease but does make me feel a little better about all of this. After doing the evaluation we should have a better idea of when the transplant will need to happen. Of course this isn't the news any of us wanted to hear but unfortunately is the reality of it. So I just wanted to let you all know this is what is coming up & will be in her future. I'm not sure if they would do the living or nonliving donor option & I'm sure we'll find out more on that after the evaluation. Kylee also has that rather large strawberry hemangioma on her right should blade. Up to this point it hasn't bothered her, but for the last few weeks she has had these hard crying spells where you can tell she is in pain. It has gotten bigger & also has had this dry scabby stuff over the middle of it. We took her in last week to have her belly checked out & also that hemangioma & Dr Seibel said to put some Bacitracin ointment on it to keep it moist. Well, we did that & the scab that was on it was starting to come off. So we took her in to the walkin clinic last night (Dr Seibel is on vacation this week) & the Dr on call prescribed some antiobiotic ointment & a steroid cream to soothe it. So hopefully this will help it. Dr Seibel is also looking at changing her formula because lately when she has a messy diaper it looks like there is oil in it & she said that's a sign of malabsorption. So we are trying a different formula mixed with her icky formula to see if that will work better. Keep your fingers crossed that everything will work so she can gain some more weight. Well, sorry to drop this bad news off on all of you. I just wanted you all to be aware & know what is going on. I'll keep you all updated on things as we find out more info.

Love,
Lisa