Going Home

Looks like Mario is going to come home today. Now poor Israel is waiting while the nurses and doctors go through their paperwork to release him. Frustrating on the weekend when things are slower. We hope that they'll be on their way home soon.

Emergency Room Visit

Well we had a rough night last night...around 11pm Mario vomited blood. First signs of Varices, caused by portal hypertension. I rushed him to closest emergency (Overlake) as directed by the on-call GI doc. There, he was found to be stable (and even smiling) so we got to ride in an Ambulance to Children's. Mario and I spent the day there...Israel sleeping with him there tonight. We hope to bring him home tomorrow as the docs think it was a first time minor event. He needs his new liver, but he isn't in immediate danger. We'll update more when we get the report from the doctors tomorrow at morning rounds. Take care all, think positive for our little smiling Mario. Love, Phoebe

BE AN ORGAN DONOR

Well, you had to know it would happen at some point. Here's me, telling you to tell everyone you know how important it is to be an organ donor. It seems obvious, I know everyone here in WA state can easily be an organ donor just by having a driver's license. But for some reason, not everyone is active...and kids like Bethany and Savannah (read stories - links to the right) go on waiting... An adult liver can be split and save a kid like Bethany, Savannah, Mario... Please be an organ donor and feel free to share this blog with anyone in your circle who needs to be convinced to be one. LOVE YOU ALL! Phoebe

HAPPY HAPPY MERRY

All is well. Thank you all for your cards, gifts, calls, thoughts, etc. We're a bit behind on getting cards and the lot out this year... I have some pics of the kids and stuff that I am meaning to get in the mail. Thanks for your patience :) Have a wonderful holiday. Mario's next clinic visit was rescheduled for the 8th of Jan...we have labs on the 27th still so we'll update if we get any news on that front. Know that you are all in our hearts as we spend the next couple days at home in our jammies being a family :)

Our love, Araujo's

December 18th

All is well. Besides Mario's ear/eye infection, Eva ended up with an ear infection. We left the kids with Aaron and Sarah (bless their hearts!) for the weekend and went to Whistler. It was nice to get away. Mario did fine! Eva always does fine with Isabel to play with. Israel's swearing in is Thursday this week...I said it wrong in last post. Good though cuz they'll take his green card and he'll have to apply for a passport and wait...so would have been bad to be greencardless over the weekend going in/out of Canada! I came home with a sinus infection, so I'm plodding along through work today...yuck. Mario has clinic on the 27th so we won't have any major updates before then unless the pager goes off.

Everyone have a wonderful holiday! Thank you for all your cards, care packets, presents. I'm sorry to say I have done NOTHING this year. Not even put together a stack of holiday cards to mail...It has been so hectic. Please know we are thinking of you all during the holiday and wish you nothing but happiness in the new year.

Mario: Eye/Ear Infection, Israel Citizen on Thursday

Well, Mario has an eye and ear (both) infection. He's on a round of antibiotics. He also had labs drawn yesterday to check vitamin levels again. He still smiles, but it is sad to see him with goopy eyes.

On another note, Israel had is citizenship interview today and passed with flying colors. Seems they were most concerned with english language speaking and only asked a few of the "test" questions about US constitution and government...although he studied all 100! His "oath taking" ceremony is on Thursday.

I'm in Dallas, tired from flying early and still have late meetings tonight, home tmre night - marathon. Take care all

Listed

3PM 12/5 **Transplant coordinator notified me today that he was listed with a PELD of 10. It got worse because of his INR and other lab results.

10AM 12/5 Mario is officially on the liver transplant list. His INR did not improve week over week so we have to check that again next week...even though we've doubled the oral vitamin K. It wasn't bad enough to need a shot this week but needs to be checked frequently. Poor kid is having to give blood more frequently which is hard. We knew this was coming but it is still very hard on all of us. Thanks to all who have called, emailed, continued to check in and keep Mario in your thoughts and prayers. Thanks also for all the calls to check in about all the WATER in Washington this week. We were lucky this time and the river stayed within it's banks. Most of the flooding was south and west of us this time. Take care all

Mario will be listed tomorrow

They decided at the weekly transplant team meeting today. We have labs and an appt with one of the surgeons tomorrow afternoon to review details and we'll have Mario added to the liver transplant list.

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/

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!

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.

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!

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.

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.

Needs another Vitamin K shot

Mario had blood work done again and unfortunately his INR (blood coagulation) isn't great so they're making him go in for another Vitamin K shot today. The nurse/xplant coordinator said that when she recalculates his PELD score he is now a 10, but this is without a new height and weight...if he has gained more weight (which I believe he has) the score might not be that high. We will get an official recalculation on 30 October when we meet with the nutritionist, surgeon, etc. again. We have his normal 6 month check up with the pediatrician tomorrow, so he gets another round of vaccines. The more vaccines we can get in him before xplant the better - so this is a good milestone. The next major one would be his 12 months. That's when you get mmr/varicella. These can't be given post xplant (live viruses are a no no once he's on the immunosupressents). Besides having to get multiple shots this week, he's doing well. He's eating more solids and seems to only like orange foods. We find this funny since he also has a VERY ORANGE vitamin supplement that he gets every morning...he has turned his nose up at apples, bananas, peas but likes carrots, sweet potatos and peaches... Go figure.

quick update...

Just waiting still...sorry for not updating for awhile. I'm in the middle of annual budgets at work (my group does all the staff planning for all of our contact centers). FUN. Mario gets blood work every two weeks. Thus far, he is gaining weight and seems okay on his vitamin absorbtion. We have started him on solids with the blessing of our nutritionist - which is nice. He also went to daycare 2 days this week. Monday was not so great - he cried and I ended up coming to spend time with him mid day...luckily it is VERY close to my work (same place Eva has preschool). Wednesday was a totally different story, he smiled, didn't cry when I dropped him off, and laughed/played with his new "friends". So, as expected with Mario's mellow, perservering personality, he is taking it in stride and making the best of it. Beyond all that, just prepping for Halloween, Eva will be a princess (did you expect anything else?) - Mario has some options between Chili Pepper, Lion and Teddy Bear. So, we'll see where the day takes us. I'll get some new pics up here...noticing it has been a month. Mario is getting "chubbier" which is so nice to see - true weight gain (some kids gain weight, but it can be just the enlarging liver/spleen - his liver is getting hard and bigger, but he is ALSO gaining true weight). We will see how blood tests go next week - then do another more thorough check in with the transplant team on the 30th. They will continue to monitor him closely and decide to list when his condition worsens. Would be nice to get him to 12 months before xplant so he can get his MMR/Vericelli vaccines...post xplant you can't do any live virus vaccines because of the immunosupressents (sp?). Happy Autumn! The leaves are just gorgeous out our way right now. Snow soon :)

Quick Update

I'm having a crazy week at work so this will be brief, but wanted to let everyone know that the transplant team met and discussed Mario today and have decided NOT to list him YET. They are sending us more details about their decision, but it sounds like they want to evaluate again in 30 days with new labs, etc. since he is still gaining weight and doing relatively well on his vitamin supplements. I'm suprised because everyone we talked to seemed to think they'd go ahead and list him...but I guess the good news is he gets some time to grow while things are functioning relatively well still. More later....P

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

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.

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

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 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.

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.

HIDA scan scheduled for 4th September

Radiology can't fit us in until the 4th! I guess the good news is that means we are not considered urgent in any way :) Meanwhile, we play the waiting game some more. I emailed the GI and asked him to do another set of blood work orders too so we can check the bilirubin, etc. at the same time. The HIDA scan is a 90min procedure on the 4th (start an IV, inject some radioactive dye, then strapped to a table for 90 min laying still while the machine takes photos), then we do a follow-up session of 30 min (just pictures) on the 5th and meet with the GI on the 7th for the update. So, we will hopefully have a good update in a couple weeks.

Meanwhile, we are going to continue to try having a "normal" summer with the kids before I start work (coincidentally on the 4th). Doc said all our plans/travels were okay. We are going to keep our plans to go camping over Labor Day weekend at Kalaloch, see the ocean, have some fun and I'm taking the kids to AZ to see Michelle, Heather and Emma tmrw for a few days. Wish me luck on the plane with the two of them :) Israel will be working - his last day Friday before he is off for 2 months taking his "paternity leave" when I go back to work.

More in September! Love, Phoebe

August 20th - GI follow-up, bloodwork, etc.

I'll start with the good - Mario weighs just over 6 kilos/13lbs now and is slowly moving from 10th percentile up toward 20's on the growth chart. He continues to smile and laugh, etc. Unfortunately, his bilirubin levels went up again. We had hoped that would continue to get lower (toward zero is our goal) from the 1.9 it was last month...today it was 4.8. This is by no means off the charts, but headed in the wrong direction. Our GI has ordered the HIDA scan and I'm waiting for the radiology folks at the hospital to call me back with the appt schedule. This will help determine how good his bile flow is. I have all of Mario's lab results from the last 3 visits and I'm studying up on all the liver function stuff in the reports, trying to find some numbers that might be pointing in the right direction... wish me luck :) He also increased Mario's dosage of Ursodiol...hopefully this bile acid medication will help things along. The HIDA scan results will determine our next move, but today was the first day that Dr. Christie mentioned meeting with the transplant team at Children's. I KNEW this was a possibility from all the reading I've done (most Kasai kids end up needing a transplant eventually - only a handful have made it to their 20's without) but the reality of having the doctor say it outloud was still hard to hear today. Please continue to send your positive energy and prayers to Mario. Our love...Phoebe and fam

August 16th

We went in to have Mario's blood drawn in preparation for our appointment on Monday with Dr. Christie. I've been reading a lot online and found a great site called liverfamiles.net where families of kids with BA and other liver diseases meet, discuss, share information. I have found this site to be quite helpful, where you can get information from others who have gone through this and understand our situation.

On a lighter note, you can see from the latest photo that Mario is diong just amazing. He is happy and smiles, laughs, etc. He has a period of extreme fusiness every evening around 7-8pm where he seems to be in pain...we think gas, hoping that is all it is. I, of course, will bring this up with the doc on Monday.

So, we'll report back next week. Meanwhile, hope you are all enjoying your summer!

August 9th

Here is a cute photo taken today of Eva reading to her brother. She has been showing LOTS of interest in anatomy and doctor stuff lately, more than before. So, she has a bunch of new kid books about anatomy and the body. The book she is reading in the photo is one of her "BOB" books, all 3 letter words that she is learning to sound out.

Mario is still eating well, doing well. We have an appt to do blood tests again next week and meet with the GI on the 20th. He said we will probably do another HIDA scan to see how well the Kasai is working and give us some idea how long the procedure should last. I've been doing lots of research and have found a number of adults in their late 20's, even 30 years old that have only a Kasai and haven't yet needed a liver transplant. So, we're hopeful that Mario will be in that successful group. Only time will tell!

Love to all, Phoebe

7/29/07

Just adding a new photo today...Mario with his "tough man" belly exposed... gaining weight and sporting a nice scar.

July 25th - an attempt to answer your questions about long term diagnosis

Now that life has started to regain some of it's normalcy at home, I've started to do more research. Reading all the articles about biliary atresia that I read so franticly in the hospital and just trying to get my head around long term care for Mario. I found this story today about a little boy who went through what Mario is going through - hit very close to home...and thought it was worth sharing: http://www.chop.edu/consumer/jsp/division/generic.jsp?id=85239

Many of you have asked about long term impacts, next steps, etc... I'll do my best to explain what I understand so far:

Like the boy in the story, we have to be very careful about fevers now. As the doctors explained it, Mario is at risk of choliangitis. Caused by bacteria being able to get from the small intestine (backwards/up) to the liver now since he has had a Kasai. So, unlike normal kids who get a fever and you wait a few days to see if it passes, Mario has to be taken in immediately if fever occurs and the GI doc said they usually just give antibiotics so they can be sure he doesn't have/get choliangitis.

That is really the main concern for now. There is no way to know if Mario might at some point need a liver transplant, we will have to take things one day at a time, month at a time, year at a time for now on and just keep our hopes up that the goods news we've had thus far will continue. We have some great doctors and have every reason to believe Mario's liver will function normally going forward at this point. So, continue to think positive and we'll certainly keep everyone posted as we get more details in the weeks to come.

"Functioning Kasai"

Well, mostly good news today! Mario is up to 5 Kilos and into the 25th percentile for weight (higher than he has been since birth). Bilirubin levels are down almost 50% from where they were when he was admitted to the hospital. Bile seems to be flowing as it should and the doctors are happy to let us keep "pushing the calories" for now and check his blood in 3 weeks to make sure the liver is still functioning as it should. So, we aren't out of the woods yet, but WOW what a relief to hear the surgeon say "he has a functioning Kasai" :) Oh, and I don't have to give him shots anymore. He will stay on the remaining medication and supplements indefinetely. I'm running to dinner so I'll update more or answer your emails if you have questions over the weekend but wanted to get this bit out as soon as I could. All our love, Phoebe and the fam

Tuesday, July 17th

Mario weighed in at 4.72 kilos today...about 300 grams more in one week (since last visit 4.45). This is great news. The Gastro doc is still happy with the color of his poop as well. As Monika put it "Pooray!" - I had to use it :)

There is not much else to report. Dr. Christie wants to see us again on Friday after we get blood work and see the dietician and surgery folks at Children's. So, we have this marathon day Friday of blood test, appts in Seattle, then swinging by his Bellevue office on the way home. It will be good to do the check in with him in Bellevue though because he said he will take all the notes from the other appts, blood work results, etc. and give us some more detail about next steps.

On next steps, here's what he did say: some of his meds are "indifinite" - specifically ones that help bile production and absorbtion as well as vitamin supplements (iron and a water soluable form of the fat soluable vitamins). Although, I can possibly stop doing the injection if blood work looks good on Friday. Friday's bilirubin results will also give us a better idea how well the bile is flowing out of the liver - we know it is since his poop is a good brown/green color, but he is still slightly jaundice. Dr. Christie said it can take up to 3 months to get jaundice levels back to normal...but the sooner that happens, the better the chance of longer term success with the procedure. If the bilirubin levels are still high/haven't lowered enough, we will go back to children's one day for another HIDA scan.

So, send good vibes for lower bilirubin levels this week and I'll update again over the weekend. Thank you all and all our love, Phoebe and fam

Friday, July 13th

Nothing much new to report, but wanted everyone to know Mario is doing just fine. Today is the last of the high dose steroids then just 5 more days of a very low dose until he can stop taking that one. Also just one more day of one of the antibiotics, so the meds are tapering off - which is nice! I still have to give him the injections, and the vitamin supplements he's taking are for the long haul (they taste the worst too and one is a scary bright orange color). But, he is a trooper and doesn't fuss too much with all the things being pushed in his mouth.

Hope you all have a nice weekend! Our princess Eva Q turns 4 on Monday so we're doing special birthday things with her, making cupcakes to take to school Monday, etc. I'll have an update on Tuesday after we see the doc again. Love, Phoebe

Tuesday, July 10th - Gastroenterologist

Starting with the good news - Dr. Christie (Mario's Gastroenterologist) liked the color of Mario's poop (we were able to view a live sample) saying that the color indicates bile IS getting out of the liver. This is good. Other than that, really nothing to report. His weight is the same as it was on Friday when we left the hospital...actually 30 grams less (4.48 kilos Friday, 4.45 today). We obviously want him to GAIN weight but the doc said not to get too worried yet, he is eating more each day (as proven by my tracking sheets) and urine/bowel activity is consistent with what he is eating so I'm supposed to go back next week to check weight again before I worry (easier said than done). Mario's bilirubin levels are also still high, but again, we are not supposed to worry. Dr. Christie said that is normal and might take awhile to come down. I quote "We (Dr. Christie, Dr. Sawin-the surgeon, me and Israel) are all in a waiting game right now" so it is best to be patient. Like I said, easier said than done... I see Gastro doc on Tue and surgeon on Friday next week so time will tell. Keep the positive energy flowing in Mario's direction and we'll keep you posted as we know more...love, phoebe

Monday, July 9th

I got another great photo - see right - of Mario today smiling. This was taken only moments after I injected him in the leg with one of his meds. He is such a trooper! Eva's birthday is Monday, 7/16 and we were planning to have her party with her cousin in B.C. this year...so, I'm quickly changing plans and getting things organized to do a little afternoon party at school for her. She's been a great big kid through all of this...also quite the trooper! More tmrw after we see the doc - love, phoebe

Sunday, 7/8

Well, the weekend flew by. We're getting our routine down with Mario's medications. The nurse approved my spreadsheet to track everything. I did end up having to do an injection...3X/week. I gave that one to him in the hospital on Friday with supervision from the nurse and it wasn't as bad as I expected. Mario is being a trooper, tolerating all the goo we have to put in his mouth. He gets uncomfortable at times, his incision gets sore, etc. But he continues to smile and eat and poop - all good news.

I have blood tests and appt with the Gastro doc on Tuesday so I will probably have more news then. Meanwhile, thanks for your continued good wishes.

Friday Afternoon

430PM: Well, we made it home, Mario has a full belly, bravely took his afternoon meds and is taking a nap. We are going to try to relax this weekend and be "normal" for a couple days. I have tests and doc appts on Tuesday for follow-up. Sounds like we might not know conclusively how well the procedure is working until as late as 7/20. That's when I have a series of appts with the surgeon and more testing. Hopefully his blood work will be heading in the right direction on Tuesday. Let's hope. Meanwhile, enjoy your weekend. I'll update this blog Tuesday after we get home from the marathon of appts. Our love, Phoebe, Israel, Eva and Mario - home together for the weekend!

Friday Morning

10:00AM Well looks like I have to do the injection afterall, they are bringing me an orange to practice on. wish me luck with my training :)

9:00AM I had to prove I can administer his meds... 2 antibiotics, 1 steriod, 1 pain, 1 gas, 1 vitamin = 5 oral doses, 3X/day. They were going to give me an injection too, but substituted a different oral supplement we can give (another vitamin). They are rounding everything up from pharmacy so hopefully released around lunch time. I'll update tonight from home! Sounds like I have multiple docs and tests on Monday so will be here again soon to see how things look longer term...

7:00AM Wow, I'm still in disbelief at the good news. The surgeon said that since Mario has pooped (especially since it is brown) and is eating well that we can probably take him home today. Probably...waiting for the GI doc to agree. He is still on a steady regime of antibiotics and steriods - all can be given orally. He lost a little weight yesterday, but he said that is normal fluid loss. He also said they will continue to check his bilirubin levels, but won't get anything conclusive until next week. So, no reason why we can't go home and come back in to be checked out on Monday. My GI doc did say that he thought it would be Monday before we leave, so I'm not getting too excited yet. But it is all great news! All the good positive energy and/or prayers are working. Thank you and keep it up! Love, Phoebe

Thursday update

AFTERNOONG: Big development, Mario pooped! Unassisted and good qty and color :) He has been eating like a trooper today! Up to 4.0 ounces at a go, I don't have quite that much milk to contribute so we've added a special formula that is easy to digest, as well as some special vitamins that are easier to absorb (both formula and vitamins specifically for his type of condition where the bile wasn't getting where it needed to go). Doc said we still have to wait to get conclusive blood test results so I'm supposed to focus on fattening him up and getting him to poop today. :) Seems so simple. Stefanie was here for lunch and Mario was able to get his IV tubes removed (still has the IV in, but not hooked to the machine at least) so we went for a "walk" and explored all the outside places, kids outside play area has a nice garden, plus there are a couple patios (5th floor and 3rd floor). So Mario got fresh air (mum too).

MORNING: Mario is steadily eating now. I forgot to mention yesterday that they took the stomach tube out. I have a photo to post once internet is back up. Should be soon. I am typing on my wee blackberry keys to post this. They stopped his morphine drip just now. One less tube is nice. Might get IV out today. Nurses are checking to see if meds can be done orally. He is still on antibiotics and steriods due to the surgery. They did some pretty major revisions in there. We still need him to make a normal unassisted BM (he had one last night with the help of a suppository). Details! Oh and I had a lovely view of fireworks from the window. More soon, Phoebe (.5.181)

Wednesday July 4th

Wednesday: Mario got to eat today. Only half ounce at a time to start and up to one ounce just now at 3PM. But food! So he is happy. Going down ok so far too.

Having wireless issues but will try to update more tmrw. Seems the helpdesk is closed for the holiday. Love and happy 4th to all, Phoebe

Tuesday Morning

10:00AM Eva and I arrived back at the hospital about an hour ago. I took a photo and posted...Mario looks much better to me today. One thing we're looking for is the bilirubin to start to leave his body. The blood tests to prove that will be tmrw, but 2 good signs we've had are 1: he pooped a bit yesterday and 2: his eyes look clearer and more white versus yellow to me. His stomach tube has been switched from suction to just gravity so that his system can start to process things a little further down. Send good vibes and hopefully he can eat something tmrw. our love, Araujo Fam

Monday Update

7:30PM Not much to report today. It is going to be a few days before we know more but wanted everyone to know that Mario is fine, he's on some pain meds and a bit groggy. You'll also see in the photo that he has a tube in his nose - this goes to his stomach to remove anything there...they don't want too much moving down through the digestive system yet. The system "goes to sleep" for a bit after the surgery so they need to give everything time to "wake up". He did poop a very small amount this evening, which is a very good sign. They expect it to take a couple days to see enough bowel activity that we can feed him again. We're taking Eva to the hospital tmrw to see him so it will be nice to have the whole family together for a few hours. We'll update as we learn more.

Surgey went well

Monday 730AM: The surgical team came by for rounds this morning and reiterated how well the surgery went. It is unfortunate that Mario was diagnosed with biliary atresia, but we are hopeful that the surgery was successful. It is also encouraging to note that the surgeon said his liver is in very good condition. Meaning we caught this early enough that we have a good chance of success. Next steps are to monitor his bilirubin levels to confirm that the bile is flowing properly. We are also watching for bowel movement so that we can start to feed him orally again, this can take a couple days. He will probably remain in the hospital for at least a couple weeks.

Scheduling and Visits: Israel is taking today through Wed off work so we can overlap our time here together during these first few days. Starting Thursday I'll probably be here on my own most days and we'll rotate nights, so that would be a good time for folks to start thinking about visits mid-day when I might need a break to run for food or whatever. Just email me to coordinate that. Eva's daycare has space to take her during the day so she's in good hands and with her friends.

Like me, you probably want to know more about long term impacts for Mario. It is too early yet to know, so continue to send you positive energy his way and we'll visualize the best possible outcome. love, phoebe

Sunday 830PM: Mario's surgery was wrapping up around 430PM when they called us for consult. The surgeon said he was very happy with the results and that the Kasai procedure went very well. He'll be monitored closely the next few days and we'll know more about how well everything is working.

By the way, the surgeon said that Dr. Kasai from Japan who came up with this procedure is named Mario.

More in the next few days...all our love.

Sunday

6:39pm: Surgery went well. Mario is fine. Phoebe will send more info later tonight.......

2:13PM: They called me at 2pm to tell me that they are going to proceed with the Kasai procedure. It is disappointing that he has Biliary Atresia, but at least we now KNOW what the problem is. The nurse assured me that Mario is doing well and we liked the surgeon and team when we met them to discuss the procedure(s) so he is in good hands. This part will take 4 hours or so - will try to update everyone later tonight. our love, phoebe

Sunday 11:30AM They are coming for us. Send good vibes. We'll update you when we can.

Sunday 9:06AM - we have been delayed again due to another child here in the hospital who became unstable this morning needing surgery. We knew these delays could occur over the weekend, but asked the team to try to squeeze us in anyway, so I hope everyone understands this was at our request - otherwise we would have been scheduled for Monday.

This team here at Children's is awesome so don't let the delays impact your impression of them. We hope to be going later this morning if all goes well. Mario is doing well. He remains calm although hungry as long as he gets his mama's terrible singing and humming :) He likes it!

Sunday ~5:46am
getting ready to return to the hospital. Eva slept at home with me last night...she is doing okay. Handling all this very well. I wanted to be sure to tell everyone that Mario is doing very well with all this. He has been a trooper. He flirts with the nurses and smiles at everyone...resilient. Send lots of love today...Phoebe

Surgery delayed until Sunday....

1:40PM: There were emergencies in the OR today so we have been bumped until tomorrow. Good news is Mario is now able to eat again. The plan is supposed to be the same as it was today...stop eating at 2AM, prep for surgery around 8AM and go into OR around 9AM. We will keep you posted.

-Phoebe

Day of Surgery

9:16am...They were supposed to get us at 8am, surgery around nine and we just got bumped to noon so they said they'll come get us for prep and to talk to anastesiologist around 1030/11am hopefully. He hasn't eaten since 2am so we will spend the rest of the time cuddling and trying to soothe him from his hunger :(

-Phoebe

Mario Araujo's condition

Mario has been at children's hospital since Wed afternoon when we received blood test results at his 2 month well baby check up that indicated he was having problems with his liver.

This web link pretty much explains what they think it is and tests that we have been having done:
http://www.nlm.nih.gov/medlineplus/ency/article/001145.htm
We had ultrasound and HIDA tests yesterday and today. Conclusion is that he is going for surgery, first to check the bile ducts and flow to gall bladder...if functioning that is all they will do for now (meaning they rule out Biliary Atresia), and will take a biopsy/liver sample and close him up (about an hour). If not functioning properly, they will do the Kasai procedure explained in that article (4 hours or so). They are hoping to get him in for surgery in the morning tmrw (sat) around 8-9am.
I've been at the hospital the last two nights and Israel is there now. I'm going to try to sleep for a few hours. Eva is with her friend Hannah and doing fine. I will update Suzi (Hannah's mom) and/or Michelle (my nurse friend) as things develop and the updates will be posted on this blog.

Thank you all for sending your positive energy and prayers this way, I know you want to help and I will call you or email you if there is anything you can do.

You can email me back directly if you want. I do have wireless in the hospital room - this is better than calling so I can reply when I have time to do so. Right now, we just want to pass on the details we have. We will update as soon as we know more.

All our love - Araujo Fam