Mario Tlaloc Araujo

SNOWBOARDING!

2011-02-11T12:03:00.001-08:00

August 2010

2010-08-09T13:17:00.000-07:00

Mario is 3

2010-04-26T20:20:00.000-07:00

Mario had a great week in Mexico for his transplant anniversary and had a great birthday Sunday smashing his pinata and finding many monster trucks inside. Renetly Mario has; started to "try" and sometimes succeed in using the bid boy pottie, lost every single toy from his room for hitting his sister after being told not to, earned toys back by having great days as a polite little man, splashed around in the pool with mama, had his first official swimming lesson, "graduated" at school to the Starfish class... the list goes on. In short, he's being quite the "normal" boy. Other than a few sideways glances in swimming at the large scar across his tummy, no one would know he'd been so sick just 2 years ago.

Please take a moment...

2010-04-11T08:57:00.001-07:00

...to think of Clinton this week.
Mario received his transplant 2 years ago and is doing fine. We are forever grateful to Clinton's family for the gift of life, their decision to donate. Our hearts go out to them for their loss.

Bucerias, Nayarit, Mexico...vacation with sis and mum

2009-10-18T08:43:00.000-07:00

Team Mario walking in Liver Foundation 5K on Sunday!!

2009-09-15T11:27:00.001-07:00

Check out the link:

http://go.liverfoundation.org/site/TR/LiverLifeWalk2009/LiverLifeWalkSpring09?team_id=9350&pg=team&fr_id=1310

cutest kids ever

2009-08-31T19:05:00.000-07:00

Helmets Rule!

2009-08-24T11:14:00.000-07:00

Hanging out with Gavin, being "safe" wearing helmets :)

Clinton's Birthday

2009-07-22T22:12:00.000-07:00

July 23 is a special day and we'd like to ask you all to take a moment to honor Clinton. Clinton lost his life in a tragic accident during the spring of 2008. When his parents, Lesa and Chris, realized that doctors could not save him, they agreed to donate his organs so that others might have a chance at life. Mario received part of Clinton's liver. As you know from reading here, Mario has done amazing because he recieved the gift of life from Clinton. Clinton would be 5 years old. Our family and Clinton's would be touched if you would take a moment to think of Clinton on this special day.

2009-07-17T14:15:00.000-07:00

We met Clinton's family on Friday, I can share his name with you now with permission from his family. As you can imagine this was a very emotional experience for everyone. His parents, Lesa and Chris brought pictures of Clinton for us to look at. Mario and I looked through the photos while Eva played in the office with Clinton's 2 older brothers dressing up in swag from around the donate life office. There was one photo of Clinton wearing a little hooded frog suit which Mario noticed right away. He was holding his little stuffed frog that he always carries around and kissed Clinton's photo with his frog. Mario is of course too little to understand the situation, but it was so cute to see that connection between the two boys. Here's a couple photos of Clinton that his mom gave me to share.

Meeting Mario's donor family

2009-07-05T16:19:00.000-07:00

Our updates are less frequent these days, but I know some of you still check here for updates...so, NEWS! We are scheduled to meet the parents and siblings of Mario's donor (the 2nd one) on Friday. Words cannot describe the feelings I have as I try to prepare for this meeting. I only hope that Mario's life and smile will help give some meaning to their loss.

Hawai'i pics

2009-05-22T19:16:00.000-07:00

Phoebe MADE a cake

2009-04-23T22:36:00.001-07:00

2009-04-21T10:43:00.000-07:00

Mario is turning TWO on Saturday. There will be a small, low key, frog themed party at home. We've asked guests, in lieu of presents, to please consider a small donation to Children's Hospital Tranplant Fund: https://secure.seattlechildrens.org/ Here is a photo of the frog pinata - work in progress - Eva still wants to add spots, tongue, etc.

Mario's Anniversary

2009-04-14T10:49:00.001-07:00

Today marks the one year anniversary of Mario's second Liver Transplant. I have struggled over the last few days to find the words to put here. It is with mixed emotions that we recognize this milestone in his progress and recovery. I would ask you each to take a moment out of your day and send your thoughts, prayers and energy toward the family who passes the anniversary of their young sons passing. Because of their amazing gift, Mario is with us today.

2009-04-09T21:41:00.000-07:00

As we pass and approach the anniversary of Mario's transplants, we just want to remind everyone to keep the donor families in your thoughts and prayers. Mario will be two on April 25th and we would be honored if you would choose to make a donation in his name to the Children's Hospital Transplant Fund. Here is the link: https://secure.seattlechildrens.org/

All our love, Araujo fam

2 week lab check = good

2009-04-02T13:40:00.000-07:00

Mario had labs drawn this week to confirm that everything still checks out with the lower level of his immunosuppressent and removing another medication. Everything looks great still! So, we get a 1 month pass from labs and don't return to clinic again until June (3 months). All good news!

Mario annual Ultrasound

2009-03-17T19:07:00.000-07:00

Mario did great today...actually fell ASLEEP during his ultrasound. I think he wore himself out trying to fight it. The good news is that the ultrasound results were positive. His lab results were also good and consistent with previous months. He has to go back in 2 weeks for labs, but that's because we're reducing some medication. He gets to lower his immunosuppressent dose, which is GREAT news. Here's a photo of him sleeping on the ultrasound table. Happy St. Patrick's Day!

2009-02-24T14:56:00.001-08:00

Here's the link to the 3rd annual Liver Families montage. All the kiddos from our online forum that have battled liver disease:
http://www.onetruemedia.com/otm_site/view_shared?p=818437f6e31b0b1c018ff7

Seattle Culinary Gala

2009-02-18T10:00:00.001-08:00

Mario's photo and story are now posted on the web-site.
http://www.liverfoundation.org/chapters/pacificnw/events/449/

A couple brochures with Mario

2009-02-05T13:18:00.000-08:00

Mario has a bug and is having a mellow, cuddly day at home

2009-01-27T11:46:00.000-08:00

Cool Event...

2009-01-23T17:49:00.001-08:00

We've just signed up to speak at this event...would love to see familiar faces in the crowd! http://www.liverfoundation.org/chapters/pacificnw/events/449/

2009-01-19T11:23:00.001-08:00

played soccer at the park today

2009-01-17T18:43:00.000-08:00

2009-01-11T20:02:00.000-08:00

Mario is such a big boy now he can take his medicine (pills) all by himself.

2008-12-31T16:06:00.001-08:00

Mario had labs drawn last night and the results look great. This is fantastic news since we removed one of his immunosuppressants 2 weeks ago. We're very pleased to have one major medication taken off the list. All the best to you and wishing you a very happy 2009!

Merry Christmas Eve all...it just KEEPS on snowing here

2008-12-24T16:57:00.000-08:00

Mario eating an ice cicle (spell?)

2008-12-24T16:52:00.000-08:00

2008-12-24T14:27:00.000-08:00

2008-12-18T13:16:00.000-08:00

Finally got our snow today...

2008-12-16T16:57:00.000-08:00

Mario had a great appt today. He's over 27 pounds now! He continues to have good liver function and we were able to discontinue one of his immunosuppresant medications. Coming off medicine is such a treat...the list just gets shorter, we love that! But the other great news is that he doesn't have to go back to clinic until March! A 3 month pass from seeing the doctors. We do need to visit the lab a few times in between but it is still progress! Hope you are all staying warm this holiday season...it is VERY cold here in the Seattle area. Our thermometer said 12 degrees this morning...brrrrrrrr :)

Mario fell asleep in the chair while eating a cookie yesterday...

2008-12-08T12:11:00.000-08:00

2008-12-03T20:12:00.001-08:00

Mario, new haircut

2008-12-01T10:32:00.001-08:00

And his Wallabies jersey for the Aussies.

2008-11-30T17:59:00.000-08:00

Playing with trains under the Christmas tree...

More photos...

2008-11-21T12:42:00.000-08:00

This one cracks me up:

Some more photos from our trip to Mexico (there are more of Eva on her site too)

2008-11-03T13:36:00.000-08:00

Naked in Mexico

2008-10-29T15:34:00.000-07:00

Best LFT's EVER from labs last night

2008-10-21T08:46:00.000-07:00

WOOHOO Mario

2008-10-15T20:53:00.000-07:00

This is an example the living legacy foundation sent over from our photo shoot the other day.

All good news for Mario!

2008-10-08T13:27:00.000-07:00

Mario's liver function labs were great on Monday (the other good news is they let us switch to evening timed lab draws...so 30 min prior to 8PM meds versus 8AM meds which is MUCH easier to do around work schedule). ANYWHO! Mario's results came back NEGATIVE for EBV and CMV YAY - CMV was the one he tested positive for a few weeks back. The valcyte seems to have done the trick. We also found that his Tacro level (immunosuppresent) is right where it should be after raising then lowering the dose over the last month. Dr. Horslen thinks this is because Mario's body is finally absorbing it properly. So, good news all around. I think (hope) this means we'll be able to get him off steriods soon - within the next month hopefully.

2008-10-06T11:01:00.000-07:00

Last clinic appt, Mario insisted on keeping his rubber boots on(or as Dr. Horslen calls them: "Wellies")...so here he is naked except daiper and wellies. I will have to save this for the high school girlfriend!

Photos from the Donor Awareness event Mario did in August

2008-09-30T20:52:00.000-07:00

Dr. Reyes is the man standing next to them...he's the head of the liver and intestine transplant program and one of the surgeons who did Mario's transplant.

More Mario Awareness...

2008-09-30T07:03:00.000-07:00

We're going to meet a photographer from the Living Legacy Foundation on Wednesday for a family photo. Mario's story might be used in a local brochure (including a Spanish version) and on their web-site. Mario's story will help raise awareness about the importance of be an organ donor...

Donate Life. Done Vida.

Mario fun...

2008-09-22T19:54:00.000-07:00

labs this am, clinic tmrw

2008-09-22T11:23:00.001-07:00

Nice quick easy lab draw this morning...much improved from last time. We have clinic tmrw afternoon so we'll have a doc update then. Meanwhile, Mario is doing well, moving around a lot and being more like a big boy every day. Our latest big step last week: No more bottle except for bedtime!

2008-09-10T08:55:00.001-07:00

Well Mario's CMV level dropped to 430 from 1400. I'm still trying to figure out what those numbers/levels translate to...but down is good.

3 pokes today...blah

2008-09-09T13:45:00.000-07:00

Poor Mario had 3 attempts at lab draws this morning with no success. I finally just asked them to do a finger poke and get enough blood for the 2 most important tests. I just hate making him go through that. I usually muscle through, but today was the worst - and one of the really good girls was doing it too so I couldn't even be mad at her. His veins were just not "plump" today I guess.

Oh and the CMV test comes back in 24 hours so I'll have that update tmrw. It was one of the "important" ones.

I posted a link to the right. There is this Olympic Snowboarder Chris Klug who is a Liver tranplant recipient and does lots of PR for UNOS, Organ Donation. I thought it was cool to share - since I love Snowboarding AND liver transplant people :)

Enjoy

2008-09-08T11:04:00.000-07:00

Just a quick note to let you all know that Mario has been doing fine with his new antibiotics. He has not have any fever or diarrhea so that is a good sign that the virus isn't going nuts. He gets lab tests done tmrw AM and we hope to see the CMV levels going down. Will keep you posted.

CMV Positive

2008-09-03T13:10:00.001-07:00

Well, Mario has tested positive for CMV. You can see what this virus is at this link
http://www.cdc.gov/cmv/
I've read a lot about this and we of course knew that it was a high probability, but still frustrating. Mario will go back on an antibiotic and we'll do another lab draw next week to see if the level goes up or down.

Send him some good thoughts :)

It's official, Mario is WALKING

2008-08-22T09:05:00.000-07:00

Here he is with his Superman cape... I'm not sure where the cape came from but as Frazier smartly pointed out yesterday, no good superhero gives up his source.

2008-08-19T19:38:00.000-07:00

We had clinic today...labs drawn this morning showed improvement from Friday. So, correcting the dose on his Prograf seemed to be the right thing. We're going to try regular MILK now too...this is HUGE considering the price of the formula he's been taking. Mario now weighs just over TWENTY FIVE pounds and has actually jumped above his normal growth curve (normally-consistently along the 50th percentile). He is also taking as many as 5-6 steps on his own, standing without holding onto something...he's getting to a big boy :)

August 15th

2008-08-15T22:07:00.000-07:00

Well, Mario's liver function labs were SLIGHTLY elevated today. Turns out one of his immunosuppressent levels is continueing to trend low. So, we do a little dance, change the dose and go back for labs and clinic on Tuesday. Hopefully that does the trick. Think positive for him :) Yesterday was the 4 month anniversary of his liver transplant. Hugs to all

Check this out!

2008-07-31T09:05:00.000-07:00

Savannah is a "Liver Families" friend.

http://bakerella.blogspot.com/2008/07/pops-for-purpose.html

2008-07-30T15:23:00.000-07:00

Just a couple photos of Mario playing while we were at a friend's bbq this weekend

Mario Awareness

2008-07-28T11:11:00.000-07:00

We're excited to report that Mario has been invited to paricipate in an Organ Donor Awareness event this coming weekend. He'll be one of the "recipient" examples and a shortened version of his photo montage will be played at the event. Here's the press release:

UNITED FOR LIFE: MULTICULTURAL COMMUNITIES HEAR STORIES OF HOPE ABOUT THE GIFT OF LIFE

NATIONAL MINORITY DONOR AWARENESS DAY
AUGUST 2, 2008- MOUNT ZION BAPTIST CHURCH

COMMUNITY MEMBERS, HEALTH MINISTRIES, DONOR FAMILIES, RECIPIENTS AND TRANSPLANT PROFESSIONALS
HONOR MINORITY ORGAN DONORS

Seattle, WA—(July 23, 2008) – People of color make up 20% of the U.S. population yet they comprise 53% of individuals on the national transplant waiting list. On Saturday, August 2, the Living Legacy Foundation, Mount Zion Baptist Church Health Ministry and First A.M.E. Church of Seattle Health Ministry will honor and celebrate the extraordinary gift of organ, eye and tissue donation for National Minority Donor Awareness Day.

During this complimentary community reception and luncheon guests will hear stories of hope and learn about the power to individually and collectively impact this health crisis that disproportionately affects communities of color.

Mary Leitka, sister of Chief Klia of the Hoh Tribe, will share what it means to her that her brother left a legacy for both the next generation and his kidney recipient by being an organ donor. Kelly Sim, wife of organ donor Johnathan Sim, will impart what she has discovered on her journey from honoring her husband’s wish to donate his organs to becoming an advocate for donation. Recipients including Robin Prentice will share their gratitude for the gift while Dr. Jorge Reyes will talk about the extraordinary moment in a lifetime when he can save a child in need.

Chief Klia, who passed away in December 2007, served on the Hoh Tribal Council and presided at numerous tribe events. He was acknowledged as the hereditary chief of the Hoh Tribe and loved to carve canoes. He was part of the Hoh Tribe’s first Tribal Paddle Journey in 1997. “He wasn’t only a chief, but a dad, a grandfather, a brother, a mentor, a teacher. Organ donation was a vision he had of life being continued,” said his sister Mary, who, along with her family, will perform a traditional Paddle Song at Mount Zion in his honor.

Johnathan Sim’s belief in leaving a legacy of value was at the core of his being. He worked for World Vision, an international relief and development organization. Two days into a much-deserved vacation, he developed strange symptoms, keeping him off his feet at home. Within a week, he had a seizure and received emergency surgery. Three days later, he was gone. “He would have wanted nothing more than to leave a legacy of life for others in his last days,” says his wife Kelly. He did this through organ donation.

Robin Prentice, an African American recipient, went to the doctor with what she thought was the flu, but turned out to be pneumonia in both lungs. When she didn’t completely heal, a biopsy of her left lung revealed “Usual Interstitial Lung Disease.” There is no cure and she had to receive a transplant. Robin worked as a social worker for Casey Family Programs for over 12 years, working tirelessly to make an impact on her community. “I feel a tremendous responsibility to my donor and my donor’s family for this wonderful gift of life,” she has said.

“My purpose is to give those children who are alive today due to organ transplantation every chance at a happy, healthy future,” says Dr. Jorge Reyes. Dr. Reyes is currently the Chief of the Division of Transplant Surgery at UW Medical Center and Director of Transplant Programs at Children’s Hospital and Regional Medical Center. He is internationally known for his research and speaks numerous languages, including Spanish and Portuguese.

“It is our honor to recognize the heroic people who support donation, the greatest example of human generosity and kindness,” said AJ Johnson, Diversity Team Co-Chair and Organ Recovery Coordinator for LifeCenter Northwest. “We believe partnerships with the communities we serve are key to saving lives and decreasing the waiting list.”

Sponsored by the Mount Zion Baptist Church Health Ministry and First AME Church of Seattle Health Ministry, this event hopes to raise awareness of the need for organ, tissue and eye donation among all communities. To help members manage their physical, emotional and spiritual health, Mount Zion's Health Ministry staffs qualified nurse practitioners for each worship service, publishes a monthly column in the Zion News on health-related issues, provides cholesterol and diabetes screenings, blood pressure checks, administers first aid, sponsors educational seminars and hosts an annual bone marrow drive. For more information visit: www.mountzion.net. With the African American Health Care Network, the Mary Mahoney Nurses and other entities, First AME Church’s Health Ministry educates church and community members on legislation, policies, procedures and practices that affect the health care of this community. For more information visit: www.fameseattle.org.

LifeCenter Northwest is this region’s federally-designated organ procurement organization. LifeCenter Northwest facilitates the recovery of organs and tissues in Washington, Montana, Alaska, and North Idaho. The Living Legacy Foundation at LifeCenter Northwest is a nonprofit organization which provides accurate information about organ, eye, and tissue donation to the community. By empowering individuals to register their donation wishes, they hope to help the nearly 100,000 people waiting for a transplant. To register your donations wishes, go to www.donatelifetoday.com.

WHO: Multicultural community members, health ministries, donor families, recipients and transplant professionals

WHAT: Living Legacy Foundation / Mount Zion Baptist Church Health Ministry / First AME Church of Seattle Health Ministry host a free and open to the public community reception and luncheon. Door prizes include a flat screen TV and more!

WHEN: Saturday, August 2, noon - 2pm

WHERE: Mount Zion Baptist Church
1634 19th Ave, Seattle, WA 98122

WHY: Honor and celebrate minority donors and learn about the power to individually and collectively impact this health crisis that disproportionately affects communities of color

HOW: MEDIA EVENT NOTE—Media is welcome at the event, and in person interviews will be available following the event at 2:00 pm. To schedule interviews in advance or with questions regarding this event, please contact Jen Bergman at 206-447-1801 -- jen@vendenbergcom.com OR Julie Monica, (206) 595-4183 -- juliem@lcnw.org.

Yum Cupcake

2008-07-20T19:51:00.001-07:00

Mary and Jody took us to Zoo Tunes for Eva's birthday. Mario really liked his chocolate cupcake.

2008-07-16T06:31:00.000-07:00

Today is Eva's Birthday. Her mom made her own blog for her to update with events and things that are going on in her life. You can check it out using the link under her face at the right.Mario wore his tie dye to Isabel's birthday party in BC this weekend.

Mario had his first operation 1 year ago today

2008-07-01T22:43:00.001-07:00

I made this "montage" of his journey, enjoy when you have 6 min and 22 sec to spare :)

Make an on-line slide show at www.OneTrueMedia.com

Sunday 22nd at Cannon Beach

2008-06-24T13:13:00.000-07:00

Another photo from a different camera...me and the kids enjoying the beach.

Cannon Beach Wknd Getaway

2008-06-23T12:59:00.001-07:00

Physical Therapist Assessment

2008-06-20T07:16:00.000-07:00

We had our check in with Mario's physical therapist at Children's yesterday. Mario is doing great. He's about a month behind on his strength/balance/walking skills, but otherwise doing very well, developing all the right muscles, etc. She thinks he should be walking within the next month or two so we'll do one (hopefully final) check in with her in August. I love that they are so thorough in monitoring his progress and happy to have them validate what I already thought, that he's quickly catching up from his weeks in the hospital and will be doing all the normal stuff a 14 month old should be doing any day. Happy Summer all!

Happy 2 Month Anniversary for Mario's Second Liver

2008-06-13T11:20:00.000-07:00

Just taking a moment to note that Mario will be 2 month's post transplant (#2) tomorrow. His lab results from this morning are good, still trending down on the liver function tests (down is good). He continues to gain weight and will probably stand up and walk any month now. Thank you all for your warm thoughts and support through it all! There are sure to be bumps along the way, but it is nice to take a moment and celebrate 2 months. Happy Pa's day to all the dad's this weekend too :) Best, Phoebe

Happy Junuary

2008-06-10T17:56:00.000-07:00

I'm happy to report that we were moved to BIweekly clinic today. Woohoo. Still need to draw labs weekly, but it will be nice to have 2 less trips/month into the hospital. We have a physical therapy check in this month too, so I'll have a report about that next week.

Today, I wanted to share this photo of the kids eating edamame. Eva eats them out of the shell and we've been "shelling" them for Mario. Well, he'll have nothing to do with the pre-shelled beans - gave quite the protest in fact and grabbed a handful of the shells and copied his sister to drag them through his teeth to get at the yummy soy beans. He's pretty good at it actually - YAY Mario on fine motor skills. He's starting to pull up to a stand, so he will catch up on walking any day.

Hope you're all grand, happy junuary (it has been raining and cold this month in Seattle - very unseasonably cold for those that don't get that reference). best, phoebe

Happy June

2008-06-02T10:11:00.000-07:00

I know I haven't been updating as frequently, please take it as a good thing :) It has been pretty hectic going back to work and trying to keep up with all of Mario's appts. Otherwise, things are fine. We are hoping to get down to just once/week on labs this week, clinic is already once/week. Progress! Mario was playing with my phone this morning pretending to talk on it (photo). He also started pulling himself up in his crib, so we had to do the adjustment to make the matress lower. He is moving around a lot, pulling himself up, not walking yet, but good progress on his gross motor skills. He's got a developmental testing appt in mid-June to be sure, but I feel pretty confident that he is catching up nicely.

Riding forward!

2008-05-27T09:47:00.001-07:00

Mario gets to face forward in the car now...since he is over 20lbs. YAY.

2008-05-21T09:25:00.000-07:00

"Look at my cool boots Mom!"

Into Everything...

2008-05-20T10:58:00.000-07:00

"Look Mom! I got all my toys out of the box and spread them around the living room. Isn't it cool!?""What can I find to open, spill, or take apart next?"

2008-05-16T11:28:00.001-07:00

Mario had labs drawn this morning. Things are looking pretty stable. I have a chart. The yellow, tourquise and red lines are the liver function things that we want to see stay down... notice how high they got with each surgery and during rejection.

Mario Dancing

2008-05-15T10:17:00.000-07:00

2008-05-14T15:45:00.002-07:00

We had clinic today. Mario's labs are looking good and he gained weight. The doctor agreed to let us skip clinic Thursday (we have to do labs but don't have to come to clinic) so that's 56 less miles of driving this week (labs are at 7am and clinic in the afternoon so two trips in). He'll be back for labs and clinic again on Tuesday so they are still keeping close tabs on us. Best to all! Looking forward to some summer weather this weekend 80's in Seattle FINALLY.

2008-05-12T13:22:00.000-07:00

No more yellow.

2008-05-08T18:48:00.000-07:00

Here's Mario today, playing outside the pharmacy window while we wait for his medicationHere is Mario around Christmas time, just after getting listed for a liver transplant...yellow

Update from Clinic Tuesday, 5/6

2008-05-07T08:41:00.000-07:00

All is well. Liver Function labs all came down nicely. Mario was bouncing around, smiling, laughing during the appt making everyone smile. His weight gain is in question, but I think because of using different scales, sometimes weighing him naked, sometimes with a diaper, last week he had his dressing on his incision, etc. Now that we're at clinic 2X/week we should get consistency and track his true gain. He's been eating a lot, so I expect gains when we check him tomorrow. We seem to be getting close to the right levels on his immunosuppressents, vitamins, etc. A few more weeks of monitoring those and we should have a nice routine down. We'll continue to have clinic every Tue and Thu until then. Then, they'll start to decrease our visits to just weekly, eventually monthly...

Also, Eva picked and brought flowers for Nurses week which is 6-12th of May.

2008-05-04T14:08:00.000-07:00

He's home, lots of appts this week and I'm starting work again on Tuesday so we'll be busy for sure! But, he looks great and is doing fine. Will update this week as we monitor his lab results.

2008-05-02T20:36:00.000-07:00

Plugging along with the steroid treatments. He's doing great, eating well, liver numbers coming back in line. They gave us a "pass" from the hospital 1-7pm yesterday and today so we got to hang out at home as a family for a bit. We hope to come home tomorrow after the morning dose.

2008-05-01T09:04:00.000-07:00

One "good" side effect of the steriods is that they make you hungry...Mario has no issues with eating!

2008-04-30T08:45:00.001-07:00

Biopsy results as expected that he was rejecting...labs show he has already responded well to the steriods so we'll keep on this track. Hope to be home on Saturday.As you can see, he's looking great. We get the biopsy results later today...already had one round of steriods last night and did fine with it.

2008-04-29T09:48:00.000-07:00

Evening: We're here at least overnight. They're starting the steriods tonight even though we won't get the biopsy back until tmrw mid-day. All the docs seem to think his labs are pretty consistent with rejection and seem confident this is the way to proceed and treat it. 5 days of steriods. No big deal right :) Part of our new normal.

Morning: Jumping back on the roller coaster! Liver labs are elevated more so I'm taking him in for an ultrasound and biopsy this afternoon. We'll be there overnight at least, if it is rejection, they give him a daily dose of heavy steriods for 5 days (which requires being in the hospital). Seems to be a pretty common thing from what I read and they have a standard way of addressing it...

2008-04-28T17:05:00.000-07:00

Sorry for no post, we've been really busy trying to get Mario's new medication schedule worked out over the weekend and working hard to get him to take fluids. He is still not meeting the target of 30 ounces a day, but we were close yesterday. We saw the pediatrician today and Mario had a temp - 100.7 so I've checked in with the team. He had slightly elevated liver labs Sat morning so they will check tmrw morning and if still elevated they'll do a biopsy to rule out rejection. Keep your postive thoughts headed Mario's way. If he has rejection, we'll end up back in the hospital for a 5 day round of steriods. I have a cold so I'm hoping he is just dealing with the same. A GI we talked to on Sat said that the type of white blood cells he shows elevated would be more consistent with a virus. Strange to hope he has a virus, but that's what we're doing. I'll update tmrw night, hopefully with good news that his labs came back in line and no biopsy necessary.

2008-04-25T18:51:00.000-07:00

Happy Birthday Mario! Carrot cake cupcake with walnuts (for extra magnesium) and cream cheese frosting...mmmmm!!!!

Going Home

2008-04-24T09:43:00.000-07:00

Wow, we're going home. I'm so relieved. Mario had great labs this morning ate a big breakfast and with no IV's in his arms for the first time in over a month, he went to rounds, fully clothed and smiling. A bit of a set up on my part :) But this kid (and this mom) deserve to be home now. Thank you all for you continued support and encouragement. We got through this long experience on the strength you shared with us. This is really just the beginning but what a wonderful beginning it is! Love to all, Phoebe

p.s. we'll have quite a bit going on at home as we get settled, get Mario's new schedule of meds all set, etc. we have to do his dressing changes and meds on our own now so please understand if you don't hear from us this weekend/next week. we'll be getting ourselves back into our routine.

One month in the hospital...

2008-04-23T10:34:00.000-07:00

Today marks the 1 month anniversary of our original admit 3/23 for transplant #1. I had hoped we might get to go home tonight after our last dose of IV antibiotics but Mario has more funky lab results today. His potassium is high (and magnesium low) both caused by his immunosuppresion and it's effect on the kidneys. It can be managed with supplements but they need to monitor him closely until we get the balance correct. So, at least another day before we can focus on getting settled at home. I am hoping to be home on his birthday. No party since he can't be exposed to germs (sorry folks) but it would be nice to be home with the whole family together that day. One can hope... I'll update tmrw, right now Mario is sleeping peacecfully in his stroller (see photo) after a very busy morning with visits from nurses, surgeoon, nutritionist, etc.

2008-04-22T11:26:00.000-07:00

Dinnner of rice, chicken, peas, some ice cream for dessert. We got to remove our line for a bit and take a stroll(er) around the floor. Mario still doesn't want to take much liquid. I managed to force down about 4 oz of a bottle right before nap. Unfortunately, we need to get him taking fluids better before they will talk about sending us home. His last dose of IV antibiotics is tmrw night so there isn't much else keeping him tied to the hospital other than fluid intake and dressing changes (his incision is still and will remain open until it heals on its own). More tmrw, love to all, PhoebeAnother big breakfast of peanut butter toast, bananas, cheerios, oatmeal and yogurt. Still doesn't want much to drink. They have a him on a drip, gotta overcome that before we can talk about going home. Low mag levels too - I guess this is normal, one of his immunosuppresents makes his kidneys "waste" magnesium so we're adding a supplement for that.

2008-04-21T09:29:00.000-07:00

Breakfast = scrambled eggs, pancakes with peanut butter. He isn't drinking, so we need to focus on that today. His incision is healing, but still open. He decided to remove his drain overnight too so he has an oozing hole in his belly (perfectly normal they tell me). So, today we focus on more food and hopefully drinking so they can remove IV fluids. We might take a stroll(er) around the wing too...the doc encouraged us to get him out of the room (just don't touch anything).

2008-04-20T08:52:00.001-07:00

Afternoon: Peas, cooked carrots and cheerios for lunch. Sat in the high chair with the door open so Mario could wave and flirt with all his friends at the nurse station across the hallway.
Morning: Moving on to "normal" food. Had a grahm cracker, some noodles from a can of campbell's chicken soup, formula. He's snoozing now but we're going to get him out of bed, into a high chair and try some cheerios next.

2008-04-19T08:11:00.001-07:00

Afternoon: We had some clear broth, some apple sauce, got a clean shirt on and sat up in bed. What a great day Mario!

Morning: Mario went off his morphine drip last night in an attempt to get things "moving" (narcotics slow your bowels down). Since then, he has pooped 3 times so we get to start on clear liquids. More progress!

2008-04-18T08:45:00.001-07:00

Afternoon: Mario had his arterial line removed and is happily waving his arm in the air (Freedom!) we just removed his oxygen tubes/tape from his face too, more freedom. He passed some gas while I was holding him in my lap, progress. And the big news for the afternoon is that we'll be moving to the floor! Out of the ICU! Gotta pack, more later...

Morning: Mario had a fussy evening, he slept for awhile then tossed and turned all night. The poor kid has been through 4 surgeries in 3 weeks, so not a surprise. His belly is distended, so we need to pass some more gas, another bm hopefully today before we can think about moving on to food.

2008-04-17T15:29:00.001-07:00

Evening: Ladies and Gentleman, we have poop. Can you hear the collective sigh of relief? I thought about taking a photo for Dave but it seemed inappropriate to violate Mario that way :) I will afterall be keeping the blog pages as a journal for him to read later.

Afternoon: Mario is doing well, he got his catheter out and is peeing freely :) Now we just need to get some bowel movement so we can think about food. He has gas sounds in his belly but needs to pass some gas and stool before we can start food. Other than that, not much to report.

Quiet

2008-04-16T09:57:00.000-07:00

Evening: Dr. Healey gave a thumbs up on the ultrasound. I haven't seen the official report yet, but thumbs up is good. His tacro level is high (anti rejection meds) so we need to watch that. His oxygen levels are improving. Nothing much more to report!

Afternoon: Things are still mellow. Got one of the drains out. Israel is holding Mario now and I'm going to take Eva for sushi. She needs some mommy time. Mario is still on some extra oxygen, but otherwise doing quite well. I'll update later tonight if there is anything to report.

Morning: We had a mostly quiet night, working to get the mix of pain meds just right so Mario is comfortable. He's also retaining fluid so we're watching that and they'll give a diaretic if necessary. He's on a bit of extra oxygen but still breathing well on his own. We'll do another ultrasound today and might remove one of the drains from his belly and his PICC line. Trying not to predict anything this time, just taking it one day at a time. Today he's doing well.

Extubated

2008-04-15T10:34:00.000-07:00

210pm extubated (no more breathing tube). Reyes and Healey said the ultrasounds looks great.

noon: Hi all, thanks for your paitience, internet issues at the hospital this morning! Mario is doing very well. He had a good night with solid numbers and he was awake shortly after they brought him back to ICU. He is mostly breathing on his own at this time so the breathing tube should come out today (awesome to get it out on day 1). They did an ultrasound this morning and we're awaiting the official results before removing the breathing tube, but I did get a thumb up from Dr. Healey when he peaked into the room and looked over the shoulder of the girl that was doing the ultrasound. Mario's incision is open this time, only the skin, muscles sown closed...they are being very careful about infection since this is the 4th time they opened through that incision. Today will be a quiet day, I'll update later if there is anything new.

morning/internet down: hi everyone its Chantel talked with Phoebe the internet is down at the hospital she will update the blog as soon as possible.. Mario is doing good, they are hoping to takeout his breathing tube later today. Mario is being a trooper.

Going to surgery

2008-04-14T07:23:00.000-07:00

9:00PM Dr. Healey came to tell us they are finished. They are happy with the liver...need to closely monitor blood flow and he'll be on a heparin drip again (to prevent clotting). There is still some risk of infection since they went in and stirred up the bacteria that were in the old liver. It sounds like it was in pretty bad shape. Mario had some low bp's during the surgery, caused by the infection so he's on medication for that. Tonight is watching that, tomorrow we do and ultrasound to confirm blood flow is good and over the next few days we balance blood flow versus bleeding very carefully. They're letting us back soon so I'll probably do my next update in the morning. Take care all

7:30PM Dr. Reyes came out to tell us that everything is still going well. He's happy with the bloodflow and Dr. Healey is finishing up connecting the bile duct. should be 3-4 more hours.

5:30PM Received another update that the liver is in and they have blood flow, they are in the process of reviewing everything via ultrasound. They estimate another 1-3 hours until they start to close him up. The nurse said that "everyone is happy with how things look so far." He agreed when I asked if it seemed things were going more quickly than expected. I am surprised that they have completed so much of the surgery already.

3:30PM We just received an update that they are starting to attach the donor vessels to the aorta (this is the part where they redo the hepatic artery that was blocked before). The nurse said he'd update again when they have blood flow to the new liver.

2:00PM We talked to the OR nurse. He said they've started to remove the old liver and Dr. Reyes is still preparing the new one. He'll update us when the old liver is out and then again later on when they have blood flow to the new liver. It's going to be a long afternoon and evening of waiting. I will update when I can. Thanks for continuing to send Mario strength.

11:00AM Mario is with the team in the OR now. This time it will probably take longer since they have the artery to repair so we are expecting a long wait. We're going outside to the play area with Eva for a bit and will be offline. We'll update later as we get reports from the team.

8:00AM We just received an update that the donor was going into surgery around 6am so they expect us to be taken in around 11am or so.

7:00AM We're sitting here waiting for them to tell us things are ready. Word is that everything is still on. Will update when we send him to the OR.

An offer

2008-04-13T12:03:00.001-07:00

6:00PM It is taking some time to procure the liver so it sounds like surgery will be first thing in th am now. At least all the docs will be well rested. Dr Reyes came to rounds this morning with news of a liver that is on the way here. It is a good offer and he expects to have it this afternoon. It needs to be reduced but has all the veins/arteries that he needs to reconstruct Mario's hepatic artery. Mario could go to surgery as early as this evening, but maybe the morning...we'll know more and update more as this unfolds. As with any offer, we don't know it is a sure thing until we are actually in surgery...so we wait :)

Mario the fighter

2008-04-12T12:04:00.000-07:00

3:00PM Dr Reyes was here, he is happy with Mario's progress against the infection. It seems his body has done a good job of sealing it off within the liver. He's still having some fevers but the blood cultures have been clear now for 2 days. Reyes was hoping for this so that we can go into surgery with the odds in our favor (lower the risk of spreading the infection to the new liver). He is still working on the logistics and said it could be at any time, he can't tell us when, but we'll have ~12 hours notice. Hard to deal with the ambiguity, but we just have to be ready. He has 20 years of experience doing this, so we certainly want him to tell us when the time is right!Hard to believe that this kid has nasty bacteria eating the dying part of his liver. Look at him! My son is an inspiration that is for sure. Surgeon should be here this afternoon to give us the timing/plan.

Meeting the surgeon

2008-04-11T15:35:00.001-07:00

Israel is over at the UW waiting to meet the surgeon that will work with Dr. Reyes when they do his operation (I'm in the icu with Eva and Mario, they are watching Elmo together). Strange coincidence, we were sharing a room in the ICU with a little boy whose dad had living donor surgery this morning. His mom was getting the call that they were finishing up with her husband and the liver graft was on the way to her son in the OR while Israel was on the way to his appt. UW and Children's don't do very many of these procedures (they said that usually people get an offer from a deceased donor before they have had to do the living related) so it is a very unlikely coincidence.

update: Israel liked the surgeon, turns out he actually came in and assisted a bit the night Mario got his transplant so he "knew" us. He suggested that Israel could be called in Saturday night to prep for a Sunday morning surgery. They need to coordinate procuring some cadaver "vessels" (probably from a thigh) so that they can reconstruct Mario's hepatic artery. Dr. Reyes said that takes coordination but isn't difficult. Assuming that all plays out as he plans, Israel could be in surgery Sunday morning and Mario shortly thereafter. Unless of course, we get an offer tonight or tomorrow. Going to spend some mommy time with Eva, hope you all enjoy the weekend (supposed to be sunny in Seattle!). Our love, Phoebe

Better evening - Better day - PELD 40

2008-04-10T08:14:00.000-07:00

The team asked for more exception points so Mario is listed at 40 (that is the top with status 1A and 1B the only thing ahead of him, those equate to acute liver failure). Hopeful that we get an offer in the next day or so, if not Israel is moving forward as planned for surgery. Mario just ate some ice chips and is chilling in front of another Elmo DVD.
Afternoon: Mario had a bath, changed his bedding, got up and snuggled with me this afternoon for about an hour. I even got him to smile and laugh a bit. Good for the heart! I think he feels better today so hopeful that we're staying slightly ahead of the bacteria. The nurse and I were able to get this photo of him smiling.

Morning: Mario had a better night last night, no spiking fevers. The cultures still grew though and this morning his white blood count is back up. Israel is meeting the surgeon that works with Reyes at the UW tmrw morning and we'll get things scheduled very soon. Israel is handling everything very well, such strength. He gave me a chuckle yesterday because he had to go get a hair cut so he would start with a new fresh cut before being in the hospital for awhile. :) Also wanted to say THANKS to everyone for your offers to help! I am on email most of the day, so I'm coordinating things that way. Know that I'm reading your notes even if I don't respond. I am relieved to have such a great support system out there ready and waiting to step in. You guys are all amazing.

Living Related Donor

2008-04-09T11:03:00.000-07:00

Evening: CT shows a collection of fluid or possibly gas right in/on the liver. But it is likely just the deteriorating tissue caused by lack of blood flow so there is no reason to do anything invasive. Just more evidence that we need to replace the liver. Mario is sleeping peacefully right now so I'm going to try to get some of my own zzz's.

Afternoon: We had an ultrsound, looks like some fluid might be collecting in there (which would be a cause for the continued infection) so we're headed for a CT soon to see if we can get a good picture of where it is. Reyes is hopeful that we could remove it without opening him up, but possibly do a procedure where they use imaging to see the fluid and go in to pull it out directly through the skin (without an incision).

Morning: I'm having trouble figuring out what/how to write today, so I'll just write it. Israel and I talked to the doctors about Israel as Mario's potential donor. They had already discussed as a team and figured out that we could schedule this for early next week. We need to do what we can to get Mario's infection under control but clearly need to move ahead and replace this liver. Israel is going to meet the UW surgeon asap and Dr. Reyes (he's a big name in doing living donor transplants) will be at UW and then here with Mario for the procedure. Mario still has bacteria, a 3rd antibiotic was added yesterday and his fever was later, shorter and less severe last night, so hoping we're making progress against the infection. Not much else to report today.

Trooper Mario Kickin' it with Elmo

2008-04-08T11:43:00.000-07:00

11:00am The consensus is that there is either still infection around the bile duct they repaired or some tiny bit of leak still. The docs are discussing it, if there is a bit of a leak still, it means another trip to the OR to "wash the area". Mario also had some trouble this morning because he pulled one of his lines part way out and the fluid went into his neck, chest, face...he was all poofy. They removed the line and the fluid is shifting now but he had no neck for a couple hours this morning.

His new score is 30 so we're pretty high up on the list. Dr. Horslen came by and made his opinion pretty clear that at this point what we really need is a new liver. I'm trying to prepare myself mentally for making Mario go through another transplant surgery.

Still growing...

2008-04-07T09:02:00.000-07:00

6:00PM The HIDA scan didn't show any obvious leaking, so we do a quick scan again in the morning to be sure. Mario is spiking a fever again, so still working toward getting the infection under control but at least they don't think there is further leaking (could just be the bile duct "flaring" up from all the surgery and the bacteria attaching to it are hard to get at). So we wait...

330PM: The ultrasound doesn't show any collections of fluid but there is some bilirubin in one of his tummy drains so we're going to do another HIDA scan to be sure there isn't something leaking still. The team discussed Mario this morning at their meeting and decided to ask for a number of exception points. He was listed as a 6 last week when we left ICU but they are asking for something in the 30's I'll get an update tmrw on the exact number (range is -10 to 40). At this point they really think it would be best to do another transplant while we're still in the hospital.

MORNING UPDATE
...badness in the petrie dish. He was STILL positive for gram negative rods from yesterday's cultures. The infectious disease guys visited and added another new antibiotic yesterday afternoon so they're telling me "hopefully" the cultures we took this AM will not grow anything. I've been hearing this daily though so I'm getting grumpy. We'll do an ultrasound here shortly and make sure no new fluid has collected in his belly. He's not very happy, feels crappy, has a fever, just zoning on Elmo (and I've mixed in a little Clifford the Big Red Dog - red cartoon animal theme is working). I want my little Mario to get his smile back.