Wednesday, September 26, 2007

Finished Transplant Evaluation

Well, yesterday was a VERY LONG day. Mario was a trooper through it all. Israel and I were pretty much mentally spent by 430pm when we left the hospital. We continue to be impressed with how organized everyone is. Mario is in good hands. He seems to have passed on the cardio, EKG, etc. tests to ensure that the rest of his body can handle this major surgery. The nutritionist confirmed we're doing all the right things with food/vitamin supplements as Mario is still gaining weight. The challenge is to ensure it is "real" weight and not weight from his liver and spleen which are starting to enlarge. So, her job will be to monitor that closely now. He will start to be at higher and higher risk of portal hyper tension, varices and other issues in the weeks/months pre-transplant. We met the hemotologist and one of the surgeons. All very informative, helpful. We'll get confirmation on Mon/Tue but it sounds very likely that they will decide on Monday to list him now. His PELD score is a 1 (range -10 to 40)...the higher the number the more critical the need for a new liver. The benefit of transplant outweighs the benefits of continued growth/development at around 15. Mario is O+ so the most common blood type, but they also consider size appropriateness of a liver...since he is small this is a major consideration. It sounds like they do about a 50/50 split of whole liver versus split liver transplants, so it could really be either one. We can also do work to identify potential living donor(s) in advance. Israel and I are starting to work out how that works (the donor is processed through UW Medical). Those are the highlights...I know this is a not very well laid out update. As you can imagine, my brain is full of various facts and details - these are the ones that seem noteworthy at the moment. I'm answering email regularly so feel free to drop me a note if you have specific questions. Please keep Mario in your thoughts, our love, Phoebe and fam

Wednesday, September 19, 2007

Not much to report...day 1 of tranplant evaluation

It was a long day, but I think Tuesday will be longer. Mario did great, smiled at everyone and didn't even flinch when they drew blood. His vit levels are okay with the extra doses of supplements we're giving him and he was up to 6.96 Kilos - still gaining weight (all this translates to a lower PELD score, meaning he would be lower on the list for a liver so we probably have a bit of a wait). We met our xplant coordinator and got a good review of the process. Met lots of people. More tests on Tuesday, and we get to meet the xplant surgeons. Then they will meet on Monday after that to decide if they will list him right away. Assuming they do, we give out all our contact details, get assigned a pager and wait...giving blood every couple weeks in the meantime so they can keep updating his score. I'll update again on Tuesday as we should have more to tell after we talk to the head xplant surgeon. Hope everyone is well.

Thursday, September 13, 2007

Mario's Evaluation Scheduled

We have our transplant coordinator and the scheduler confirmed yesterday that we will complete Mario's transplant evaluation testing and appointments on the 19th and 25th. A couple of you recently asked if we ever got the bridge fixed so I added a link to the Flood and Bridge Repair photos on the right. Seems like a long time ago now, but I guess it wasn't really :) it is repaired (517ton of rock!) see pictures it is pretty amazing. More on Mario's appts next week, etc. Take care, Phoebe

Tuesday, September 11, 2007

The road to a Liver Transplant

Well, as you can imagine, I've been doing even more reading, research, etc. since we found out we're headed toward a liver transplant. If anyone is interested, I found some great details on how the PELD scoring is done as well as general information on the types of transplant options. For a pediatric liver, you can do whole, split (adult liver to 2 kids), or even living (take one lobe of an adult relative). Email me if you want to read more - some of the best details are actual presentations that were archived from a liver conference last year. Many of the topics were specific to pediatric liver transplantation.

Latest on Mario: he responded well to the Vitamin K shot, so we will check his blood work bi-weekly for now. He has an ultrasound on 9/24 and more tests. The head GI nurse (my new best friend :) ) called today to tell me the transplant coordinator will get ahold of me in the next day or two. So, we'll be getting a lot more information soon. They seem to have a very organized approach, prepared to walk us through everything from listing criteria to insurance requirements, etc. Lots of hospital resources available to help us through this.

Thanks to those of you who have called and written. I might not always respond, but we sure do appreciate hearing from you. Know that.

Friday, September 7, 2007

Friday, September 7th

We met with Dr. Christie today. In short, Mario will need a liver transplant eventually. We are now just trying to determine when - his best guess is 12-18 months. The HIDA scan indicated that there isn't secretion - meaning the Kasai isn't functioning the way we would like. His Bilirubin levels are not more elevated yet and he has solid weight gain, so we do not go immediately on the transplant list. Instead, we have a series of more tests. Today, they checked vitamin levels and determined he is low on K. Poor enough levels that they are making Israel drive back to the hospital for a shot. Later this month we will have an ultrasound to determine the level of scarring in the liver. Then, within the month, we will have a consult with the transplant team at Children's so they can get us in their database and start working on Mario's scoring. Over the next months-year, Mario will be on the list of patients discussed as the team determines when to list him.

It is unfortunate to get this news, but on the other hand, at least we know what is coming. I've done a ton of research thus far and feel very confident in the team at Seattle Children's and the process we will go through. Please keep Mario in your thoughts.

Tuesday, September 4, 2007

HIDA Scan day, Monday 9/4

Israel and Mario spend the day at Children's today. IV draw at 10am, blood draw, injection at 1030am and HIDA Scan from 1030 to 1200. Then another 30 minute scan at 2pm. We might have to do another scan at 10am Wed morning as well. Poor Mario then gets his 4 month shots on Wed afternoon and we meet with the GI on Thu to get all the results of HIDA Scan and blood work. This will hopefully tell us if bile is getting OUT of Mario's liver as it should. We are hoping for good results to show this from HIDA scan as well as lower Bilirubin levels from blood work. These results will give us hope that we do not need to start getting assed by the tranplant team anytime soon. So think positive and send him good vibes please! He is SUCH a trooper.

Oh yeah, I start work today...first day back after 6 months. Not quite like the day Mario will have, but something. Eva also starts her EAGLE class today at school. Officially PRE-K.