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.

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...

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.

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

Going Home

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...

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.

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.

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).

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.

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!

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.

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

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

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

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

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

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

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

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

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

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...

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.

Happily Watching Elmo

Mario had a bit of a rough night with some fevers, still growing bacteria (yesterday's culture) so hoping this morning's is finally clear. They started another antibiotic today just in case. He is happily watching his ELMO DVD right now, we got a new room and have a DVD player again which is nice since he LOVES Elmo, he's mesmerized. Just waiting now, still, hoping he kicks the infection soon.

He's doing fine

8:00PM Mario has had a moderately uneventful day, which is good. He had to get some more blood to bring up his hematacrit. He's doing fine, sleeping mostly, still on pain medication. We'll stay in ICU while they watch the drainage from his belly, making sure the bile is coming only from the bile cathiter, and the other drains don't have any bile. They will also continue to take blood cultures to make sure we've stopped all the bad bacteria. His blood presures and heart rate have been better today but he still has some fever (this could just be post operative response though) so as I keep saying, time will tell. I'm taking Eva to a birthday party tmrw then back to the hospital so I'll update in the afternoon.
8:00AM We got the breathing tube out last night so he's breathing on his own again and comfortable, on pain meds again. Sort of like starting over and trying to make daily progress toward healing and eating.

Still waiting in ICU

11:00PM We were able to get back to the room with Mario a few minutes ago. He is fine. He has 3 drains and a cathiter that runs from the liver, through his bile duct, into the small intestine and that comes out of his belly into a bag. I guess this will stay in for a week to three while they monitor him and see how things go. The bile duct had started to show some damage/scarring, so they re-constructed the roux connection (y to the small intestine) to wrap around it and cover the damaged part (sort of like a funnel). Hard to say what will happen next. Right now we're focused on making sure they got all the infection out, the drains will ensure no more fluid builds up.

7:00PM They just got started with the actually operation. It takes some time to get him prepped for surgery, get IV's where they want them, breathing/vent, etc. So, we'll update in awhile when he's out and we've talked to the doc.

5:45PM They just took him back to the OR. We'll get hourly updates. Dr. Healey said he doesn't expect it to take too long. Everyone send Mario strength please, he was feeling pretty cruddy today. I have faith that the docs will fix him up.

3:30PM One of our surgeons has been in another procedure that hasn't wrapped up yet, still waiting. He's got a temp again, just trying to be patient while we wait for them to wrap things up and get ready for Mario.

11:30AM No word on when he'll go in. The surgery should be 2-3 hours. We'll end up back here in the same ICU room so I'll update when I can.

10:30AM The team has decided it is a bile leak, appears to be where the duct is attached to his Roux en Y (the piece of intestine they connected to the liver). So, he's going to the OR shortly to take a look, remove the leakage, put in a drain and try to stitch up the leak.

7:00AM We haven't had the second HIDA scan yet just waiting still.

Back in ICU

4:30PM The ultrasound this morning and CT just awhile ago shows something around the bile ducts, swelling or leakage or something...they are still working out what it might be. Mario will have a HIDA scan to rule out leakage and we'll go from there... This will take hours so I won't have much to update until tonight or tomorrow.

2:00PM He's stable, just sleeping now and seems to have kicked his fever. He's on a bunch of antibiotics because he tested positive for Gram Negative Rods (same as when he had cholangitis a few weeks ago). So, we're just taking cultures and watching petrie dishes until they stop growing now.

11:00AM They took out the line and his fever has come back down, he's napping.

8:00AM Mario started getting fevers last night, spiked up to 40C and was admitted back to the ICU. The consensus is that he has an infection in the line that he has in his neck, so he's on a bunch of antibiotics. The nice thing about the ICU is the individual care, for example, he was scheduled for an ultrasound this morning so they brought it to him. From the floor, you have to go to the ultrasound people. I'll update more later today if there are any changes.

APRIL is NATIONAL DONATE LIFE MONTH (100th POST on Mario's Blog)

Mario was able to eat 3 ounces of formula last night. This morning, Israel said he is not hungry. He is still on the IV nutrition, so this is understandable. The nurse practitioner said if the night and morning went well that Mario could try some cheerios today. I am hopeful that once he has had some real food and proved that his little system is working they will let us bring him home.

Longer term impacts of the hepatic artery are still not known. Mario is relisted and his PELD now calculated based on his liver function labs (6 currently in range of -10 top 40). They will watch closely for bile duct issues, regular ultrasounds will show any inflamation (which would lead them to do a a stent). We also added ursodiol (bile salts) to his peds yesterday to help make the bile flow easier/thinner so that it won't "sludge/clog" up the ducts. Time will tell...

Funny story, I found out that URSO means Bear because Ursodiol is "bear bile" - in the US we use a synthetic form, but apparently this was a discovery in Asia where it was found that people hunted bears for their bile which they took to assist with liver function!

Sitting up!

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