Treating for colangitis...48 hours or more

Well, even though the fever dropped, we have to treat for colangitis...apparently it can spike and we have to be safe. We'll be here for at least a couple days - if at 48 hours blood cultures are negative we can go home (best case). sigh. Annie is bringing me dinner, I'll be here tonight and probably Israel tmrw night. More later...

And doctors know best...fever up again to 38. They took blood and started his antibiotics. Mario is in good spirits, eating, tired, ready for a nap.

No scope, fever, admitted

Well, we left the house with a fever of 38C (around 100.5 F I think-they said to come anyway) and ended up at 39.1 when we got here. Dr. Horslen said there is no reason to proceed with the endoscopy since it was "elective" but now we're concerned he might have colangitis...so we were admitted. He put in orders for blood cultures, IV antibiotics. Since there are no other symptoms (no ear, throat, nose infections, etc) they proceed as if it is colangitis - not something you want to mess around with as it can damage the liver more. Anyway, we're here, his temp has come down to 37 now so I asked the nurse to check with Dr. Horslen again before we do all the IV antibiotics...he's on his way to talk to me. Mario is fine, laughing, eating, a bit warm but not hot like he was 3 hours ago. Will update as I know more...

Friday...

Well, just a quick check in. I'll be taking Mario in for another endoscopy tomorrow mid-day and spending the night at the hospital. I should be able to provide an update later in the afternoon/evening to let everyone know how things went.

Monday, meeting went well

Seems like the meeting went well. It was what we expected. I think she was pretty impressed that we had our "care plan" pretty much already laid out and ready to explain to her. We didn't have the exact details (who will be helping us and exact dates), but were able to articulate what Mario's and Israel's needs would be and give numerous examples of people in our support network that would give varied degrees of support. We won't know anything definitive for a couple weeks. Now the doctors get together and review everything - 3 main topics. 1) Israel's health, readiness for the surgery and recovery, etc. 2) appropriateness of Israel's liver to "fit" Mario 3) our ability to meet the requirements of the support plan, ongoing care, etc.

We'll keep you posted! Meanwhile, focus turns to Mario's pending endoscopy on Friday. I have to take him for labs on Thursday, then we're overnight at the hospital Friday. I'll update from there if not before. Love, Phoebe

Social worker on Monday

Well, Israel finished up all the medical testing late on Monday (2 hours in the MRI machine at the end of the day). Seems like everything went well, but we really won't know anything firm until all the docs get together and discuss it. We meet with the UW social worker on Monday. They do a pretty thorough evaluation with your "support person" (me) there to make sure you will be well covered for the recovery. In our case, this will be done with great scrutiny since I will have Mario as a patient at home too. I go into this meeting so thankful (and with great confidence) for all of you who have written with your offers to come help, fly in, move in, etc. to make sure Mario AND Israel are well cared for if we go this route. Thanks again, we'll keep you posted! All our love, P, I, E, & M

Day two of evaluation

Israel is spending the day at UW again today. Friday went well. Today he has ultrasound, EKG, MRI, more blood tests. We'll keep you posted as we find out if he'll be a viable donor.

Donor Evaluation

I know some of you are curious what the donor evaluation is all about...so, here's a summary of the schedule Israel has over the course of 2+ days:

Echocardiogram
Surgeon Visit
Liver Function Tests and 1st Blood Typing
Dietary Consult
Abdominal CT Scan
Chest X-Ray
Dexascan (just looked this up - used to diagnose osteoperosis)
ECG
2nd Blood Typing
Arterial Blood Gas (fancy blood test from what I can tell)
Abdonminal Ultrasound

Finally, a Social Work Consult, with primary caregiver (me). So, they want to meet with you and your "support person" to make sure you are UP TO the challenges of caring for the donor after the surgery. In our case, this is key since I will be caring for both Israel and Mario...they want to make sure we have a good network of assistance around us (YOU GUYS!) and that I won't end up in the looney bin with two patients at home :)

If he'a approved, Mario's team and Israel's team discuss the timing. Right now, Mario would probably continue to wait for a deceased donor since he is doing "ok" but we would have this as a back-up option if things get worse. If Israel is not approved, we can continue to send potential donors (1 at a time) until we find someone who IS approved. Those of you who have the paperwork know who you are - we are so very grateful for you! We'll keep the blog updated as we know more about Israel's evaluation.

Living Donor Evaluation - Israel

Israel is scheduled for a series of tests at UW on Friday, 2/15 and Tuesday, 2/19. So we will know more about the testing process once he's been through that!

Doing fine, still itchy

Mario had a pretty decent weekend. We kept him home, had some friends around on Sunday. He has been eating better the last few days too. I stopped giving him one medication that I think was giving him D. So, we're happy to have some mellow, uneventful days. He's still itchy, but that is just part of the drill now for the duration until transplant. Hope you are all doing well...happy mid February :)

brief update...

We're still home, happy to get back to some normalcy. Mario is fine...except lately, he is extremely itchy. See, the bile salts cannot get out of the liver through the damaged bile ducts so they start to build up and come out through the skin. He is constantly rubbing his eyes, tugging his ears, nicking his skin on his face until he bleeds. We cut his nails constantly to avoid this, but lately it has gotten worse. Diane (the nanny) has been wonderful about giving him mid day baths to freshen him up and give him a few moments of comfort. My smiley smiley boy has more and more fussy uncomfortable moments, minutes, hours. Breaking my heart to see his discomfort. He still has great moments, days, smiles. We cling to those.

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