Link to Transplant Story at Children's

http://www.seattlechildrens.org/our_services/stories/transplant.asp

You have to cut and paste it into your browser, I can't make the "insert link" function work.

February 5th

11AM - they're on their way home now.

9AM - Mario and Israel are still in the hospital this morning. Isra said they had a decent night. Mario ate a huge plate of pasta, brocolli and chicken before I left last night. More food than I have EVER seen him eat, so good sign. I think he didn't eat well before because the bleeding in his little esophogus hurt him. The photos Dr. H took of the esophogus this time look clean and pink. So, hopefully good for awhile. His hematacrit was up to 31.5 last night. Much better than over the weekend. So, the 2nd blood transfusion helped. Hopefully they will be released after rounds this morning and we will "schedule" the next scope in 3 weeks. Since Mario is too small for banding, they have to keep an eye on the varices. Take care all, thanks for your kinds words, prayers, thoughts and "stalking" (that's for Jennie) of the web-site. We love you all.

In the Hospital AGAIN

Well, Mario kept having bloody stools, so the team had us come back this morning for labs and another endoscopy. His hematacrit was down to 22 again, so they are doing a blood transfusion too. Doctor Horslen just finished up and brought me pictures of the "sealed" varices. There was a tiny amount of residual blood but nothing active, so he shot a bit more "epi" into them and looked for ulcers (found none). We're being kept overnight for observation. Mario isn't back from the OR yet, I'm waiting in his room for him while they finish up the transfusion. More later...he's okay

ER again, home now

Well, Mario threw up more blood around 3am, I took him to the ER after talking to Dr. Murray. It wasn't a terribly large amount but brighter than we would like so they had to make sure there wasn't something active again. I spent the wee hours of the morning with the ER staff at childrens again, poor Mario had to have another NG tube, an new IV, labs drawn, etc. They flushed out his tummy through the tube and his hematacrit was stable so they let me go home around 8am. We'll be spending a quiet day at home now.

Home now...

We're home now. Mario is sleeping ever so peacefully (without wires and tubes) in his crib in his room. I'm going to take a nap. Love you all, thanks for keeping Mario in your thoughts.

Saturday 11AM

Dr. Murray was just here. They asked for the lab to check his hematacrit (I was going to ask for this anyway). Mario's belly looks good, still showing blood in stools, but this is expected through tmrw so she said we can go as long as the hematacrit is stable. I just asked the nurse to see if she could bring us some veggies or rice or something for him to eat for lunch - he's not such a big fan of baby food anymore, hoping to get him to eat something soft.

Mario will have to have another endoscopy in 3 weeks, so they'll get that scheduled on Monday.

I asked about exception points. It is not "automatic" to get extra points for varices. She explained that the team could discuss and ask for points if they all see it as necessary (meaning she'll defer to the whole team when they meet Monday). She pointed out that kids with biliary atresia often need a tranplant sooner than their PELD would go up due to portal hypertension, varices (both things Mario has). So, it is a point they'll discuss. I'll follow-up with our coordinator on Monday.

Saturday Morning

Well, Mario's eating and tooting and pooping this morning, all good signs. He slept pretty well since they are letting him eat :) I'll try to get a picture to post of the one fisted drinking from the little 2oz bottles they give you in the hospital. His other arm has an IV board at the elbow so he can't bend it. I just got copies of his labs and his Hematocrit dropped slightly yesterday so I might ask them to check that or I'll worry. Otherwise, the nurse seems to think they'll let us go home today.

530PM in Recovery, Doing Fine

Mario is in revovery, waking up and fine. He does have Varices...Dr. Horslen was able to stop the bleeding by injecting "epi" (I guess this is epinephrin?) into them, Mario is too small for the banding to work. He thinks he will be fine for now and the condition will correct itself once he has a liver transplant. So, we should be able to go home tmrw hopefully. It is possible that this will happen again in a few weeks, he needs a new liver. But, I said that, we knew that :(

Friday, February 1st noon

Well, Mario had an okay evening, is stable and no more bloody vomits. All the docs came at rounds this morning and confirmed we will need to do an endoscopy. They put him under anestesia and use a "scope" to look down his throat, down into his tummy and try to figure out where the bleeding is. Dr. Horslen seems to think it is NOT varices (a vein in the esophogus that would be actively bleeding) but more likely something in his tummy. If it is varices, they would attempt to close them off with "banding" (sounds like little rubber bands) or more likely (since he is so small) they use some goo to close off/clog the vein that's bleeding. The scope will tell us more. These are all resulting from portal hypertension. We had an ultrasound a few minutes ago and are waiting to get on the list for the endoscopy...sounds like 3pm. So, we're definetely here for another night. I'll update when we know more - probably later this evening after the procedure.

Link to explain endoscopy http://www.medicinenet.com/endoscopy/article.htm

Side note - Oprah did a show on organ donation yesterday... I missed it but there's info on her site if you are interested http://www2.oprah.com/tows/pastshows/200801/tows_past_20080131.jhtml

Mario Admitted to the Hospital again :(

Well, Mario had another episode of bloody vomit at around 1230pm today with the nanny while they were on a walk. I came home, assessed the 'color' to be "not fresh" like the last two times but called our tranplant nurse. She asked me to bring him for a blood test to check his red blood count. Eva, Mario and I headed toward Children's. On the way there, he threw up brighter "fresher" blood so we ended up going to the ER. He threw up more again while in the ER. Labs came back showing INR too high (2.4), Red Blood Count down to 20 (from 28 the week before - apparently dropping close to 1/3 is pretty bad) and then his blood pressure started dropping, so they did a rush of blood from the blood bank. By 8pm he was having a blood transfusion. He is stable now and being monitored overnight very closely. In the morning Dr. Horslen will do a "Scope" - they put Mario under anestesia and look down his throat/GI track to see if there are actively bleeding "varices" - there is a procedure that can be done called "banding" to stop the bleeding if they find any. That's what I know today... Israel is sleeping at the hospital with Mario, I've got Eva and we're going back in the morning to learn all about it. I'll take my laptop and try to do an update from there - wireless works but no phones...go figure. To bed for me...

Living Donation

I've had a few questions about this and thought it was worth sharing some details. Here is a link at Children's http://transplant.seattlechildrens.org/liver/liver_organ_donation.asp

And another
http://www.transplantliving.org/livingdonation/facts/

Mario could receive either a deseased or living donor liver. He requires an O+ donor. Israel is O+ and I am not, so he is getting tested. The testing process is extensive and takes some time. It is managed through UW in partnership with Children's...so two great hospitals working on it. They look at a variety of things from size appropriateness (they usually take the left lobe) to health of the donor and eventually do detailed ultrasounds, etc. to make sure the right arteries, ducts, etc. are going to fit/match (I'm no doctor so I'm speaking a bit beyond my understanding now).

If Israel is not a match, we can continue to send potential donors, one at a time, until we find a matching donor. I have a 15+ page questionaire/consent form from UW Medical that outlines the process, gathers info on a potential donor, etc. I'm happy to share it with anyone who wants more detail.

Sad end for one little boy in my online forum

The reality of this families situation frightens me today. http://www.caringbridge.org/visit/severogonzales

Please tell everyone you know to be an organ donor.
Sobering statistics from UNOS.org
Waiting list candidates 98,028 as of today 5:45pm
Transplants January - October 2007 23,706 as of 01/25/2008
Donors January - October 2007 12,031 as of 01/25/2008

Labs OK

INR was still 1.4 so the Vit K 2X/day is still working. Basically everything is the same and we keep waiting. 9 Month well baby visit was fine. Mario is starting to rock back and forth on hands/knees, move backward, pick up cheerios with his fingers...all good signs he's developing as he should. Nothing else to report really :) We had a beautiful 3-4" snowfall last night and hope for more this evening!

All is well... (the same anyway)

Well, uneventful clinic today. We got in a bit early so the lab results weren't back yet, I'll be able to check them tmrw. Dr. Horslen is happy to keep Mario on the same dose of med to help with the periodic bleeding from his tummy. It sounds like it is very minor at this point, the last time he vomited blood the amount was very small (and old) so nothing alarming in that regard. Varices would be higher volume and more fresh (sorry to any squeamish readers). So, we continue to wait. Mario has his 9 month well baby with the pediatrician tomorrow. We have every reason to believe he is on track developmentally at this point - almost crawling, sitting up on his own, moving from tummy to sitting position and so forth. I'm noticing him starting to shy from strangers - another developmental point really. Plus he has limited social interaction since he is home now all day. We'll try to update this weekend with anything from the 9 month well-baby or lab results if they indicate anything different.

Hope everyone is having a great 2008 so far! Love, Phoebe

Checking in

Well, not much to report. Posting a new photo of Mario's fire truck that he got for Christmas...he just loves it! We had a mini version of the blood/vomit episode again this week, but since it was a much smaller amount the doc on call didn't make us come to emergency, instead increased one of his meds. I was in CA for work for 3 days, so everyone is exhausted (me from traveling and long work days, Israel from long nights with Mario). We're all looking forward to sleep this weekend. Mario has clinic on the 24th so I'll update more then. Best, Phoebe