November 27th - Monthly Clinical check-in

Well, we met with the transplant folks again today...for our "monthly" check in. We actually ended up talking to Dr. Reyes, the head surgeon (not by appt, but because he saw us in the hall and wanted to meet Mario). So, very apparent that they'd been discussing him. Dr. Reyes and I were able to cover more of the pros and cons of waiting versus listing Mario for a donor now. In short, he comfirmed (what we already know) that Mario has incurable liver disease and it will eventually fail. He has started to show signs of portal hypertension (enlarged spleen) so it is just a matter of time... We reviewed lab work with the hemotologist and nutritionist and have found that he is still not absorbing enough vitamin K, needs more D and because of taking more D, needs to supplement with Calcium. We will go back in 1 week for labs again to check all of these and might need to do a K shot if INR doesn't improve. The good news is that Mario is STILL growing, gaining weight and length...following right along the 50th percentile on the growth chart for the last few months now. The team will discuss Mario again on Monday and recalc his PELD score based on recent labs. Will keep you all posted. Keep in mind, although things are starting to sound worse, we are experiencing exactly what we expected to experience. The name of the game is waiting and we are trying to get Mario as far along as we can without causing long term damage to any other organs. He continues to grow and thrive, so if we can manage his nutrition (with all the added supplements) we aren't doing all that bad. As good as we could expect. Take care all...love, Phoebe

p.s. seemed time for a new photo so I just added one...chubby cheeks and we have 2 bottom teeth!