Thursday, November 29, 2007

PELD 9

Well, Mario's PELD score is up to 9 according to our nurse/transplant coordinator. They'll be discussing his case again in detail on Monday and decide if it is time to list him. Israel and I have expressed our opinion to be shared with the team - which is that we think it is time to get him on the list. The roller coaster ride continues... Mario still smiles.

info on PELD calaculation can be found here at: http://www.unos.org/resources/

Tuesday, November 27, 2007

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!

Friday, November 23, 2007

HAPPY THANKSGIVING

Mario had his first "meat" on Thanksgiving....Gerber "Turkey and Gravy" he LOVED it. He is becoming quite the little BOY...sitting up now, 2 teeth on the bottom, growing! He has this mischievious little smile....oh I cannot imagine what he'll be getting into when he starts MOVING :) We are thankful every day for the miracle of Mario and his amazing spirit. We are also so thankful for all of YOU! The amazing people in our lives who monitor his progress and send positive energy his way. Happy Thanksgiving to all! We meet with the transplant team for a monthly check-up on Tuesday and will post any news then.

Monday, November 19, 2007

Labs stable

Mario's condition remains about the same. We're managing his vitamin levels with supplements, he's eating more and more, still gaining weight. The extra vitamin K we're giving seems to be getting absorbed as his INR was not high enough to require a shot last week. We have our next appointment and blood work on November 27th so we'll report back then. We've tried most veggies and fruits without incident so we'll be moving on to meat this month...maybe some ground up turkey :) Happy Thanksgiving everyone!

Tuesday, November 13, 2007

Labs tomorrow!

Mario gets his 2 week labs drawn tomorrow... hoping the extra vit K and vit D and double down on the ADEK are all working... will update later in the week with results.

Thursday, November 1, 2007

Mario Monthly Doc Visit

We had Mario's monthly check in with the transplant team this week. He's gained weight - up to 7.6 kilos/~16 lbs. It appears to still be "real" weight. Mario continues to have more trouble absorbing fat soluable vitamins. We keep adding supplements...he's on 2X/day ADEK plus additional K 2X a day and now adding some D once/day. The worrisome one is VitK which when low can cause problems with blood clotting (slower than normal, causes bleeding issues so really bad). We have to monitor this closely, so he will have blood tests every 2 weeks for now on. They also doubled his Urosodiol (bile acid)...mostly due to the fact that he's bigger.

We discussed our options between a) list for tranplant now or b) continue to manage the vitamin levels and gain more weight. We opted for b. I have two main reasons for this...1) he is HAPPY, and is not experiencing any discomfort (yet) so as long as we can gain weight and manage his vitamins with supplements it seems better to wait 2) it would be a fantastic milestone for Mario to get him to his 1st birthday BEFORE transplant. Main reason for this being that he would get his MMR, Chicken Pox vaccine. If he is transplanted prior, he will never be able to get vaccinated for those diseases.

That's the scoop for now. Of course, everything could change at any time. But for now, we manage the vitamins, continue to gain weight and hope for a birthday party pre-transplant. Send him some good growth vibes and continue to think positive. We'll update in a couple weeks or sooner if anything comes up. Our Love, Phoebe and family.