Tuesday

6pm I just finished up my training on the PICC line...got my box of meds, waiting for them to remove the IV from his foot. I should be out of here in the next couple hours. Our new neighbors (mom) is one of those people that seems to attract customer service issues. In the last 30 min or so she had a dramatic episode about the guy at the front desk that was rude to her, called her credit card customer service to complain about a $27 charge and made a call to her work to complain about a coworker. It is all I can do to keep myself from going over there (keep reminding myself her kid is in the hospital).

Seriously, NO ONE in this place is rude...

Back to "normal" tmrw :)

1130am the Nurse called to tell me the PICC will be put in at 2pm and training at 4pm so we're hoping to get home sometime later tonight.

620am Added a couple photos from this morning...

5am and I'm back at the hospital so Israel can go to work. Nothing new to report really...we expect to get the PICC line later today hopefully. Mario will have to be sedated, so he has to be NPO (no food/drink) for 6 hours prior. Once the PICC line is in we get trained how to do his meds and can start talking about getting released. Hopefully sometime tmrw? We'll see. I'll update when I know more.

Monday

Cultures still negative, good news! Getting a PICC line maybe tmrw so we can administer meds through it. INR was up to 2.0 this morning so he's getting a vit K shot - well into the IV. Still doing antibiotics, will be on those for 14 days. They will train me (and nanny tmrw) on the PICC line, so good timing that she will be coming in then. Mario smiles, flirts, is generally in good spirits. Happy Birthday to ME! Thanks for all your notes, messages, etc. :)

Sunday

Not much new to report. Still in the hospital, they will take blood and do cultures daily now. I thought we just needed one culture to be negative for 48 hours, but one of the nurses just said it might be 3 cultures need to be negative for 48 hours (so 4 more days here?). I'll confirm that at rounds tmrw morning. Either way, we'll go home with a PICC line and have to give him IV antibiotics on a schedule at home. On top of everything else, Eva needs to be registered for Kindergarden this week! Thankfully, I remembered BEFORE :) I'll write more tmrw, I'm hoping they'll raise his PELD tmrw, from my calculations on the UNOS web-site (they have a calculator online) I think he would be a 16 based on the latest labs. Monday will be the day to figure all this out. More then...

+BC bloodculture gram - rods

My medical training continues... in short, the little nasty organisms are growing in the petrie dish. The gram - rods (this is the type and shape, rod shape little organisms) are treated with the antibiotics we're already giving, so we continue the course. Mario will be in the hospital now for awhile as they draw daily cultures, until one is conslusively negative for the organisms (takes 48 hours to confirm negative). So at this point, the next culture is this afternoon so we're here until Tuesday at the earliest. :( The silver lining (yes, I can still find one) is that Mario is a well timed little boy - exposing this the day we were scheduled to be here! If we had not been here already on Friday, we would have likely ended up at the pediatrician Friday, maybe Saturday and maybe being admitted here on Monday. So, we caught it early.

Saturday morning

11AM: Dr. Horslen came and said since the bilirubin was up, that was more evidence pointing toward Cholangitis. So, we wait, watch the cultures and do labs again and watch the bili. We need 2 things to occur now to be in good shape - bili must decline and cultures must remain negative. Labs tonight will tell us bili, cultures reach 48 hours tmrw late afternoon. Worst case, they do a line that we can give antibiotics through at home to complete the longer round if necessary.

8AM: Mario is doing fine. Temperature spiked to 38.9 again last night but has dropped and stayed down now. His bilirubin went up to 7.8 last night too...not a good sign. The resident just came to tell me that 14 hours in there's no growth in the cultures (good). We just need to keep waiting. I'm imagining some lab person going by a petrie dish with Mario's name on it looking through a microscope every couple hours for nasty little organisms.

Cholangitis, not colangitis? I was tired last night :) Here's what I found about it:
Background: Acute cholangitis is a bacterial infection superimposed on an obstruction of the biliary tree most commonly from a gallstone, but it may be associated with neoplasm or stricture.
Pathophysiology: The main factors in the pathogenesis of acute cholangitis are biliary tract obstruction, elevated intraluminal pressure, and infection of bile...Although the exact mechanism is unclear, it is believed that bacteria gain access to the biliary tree by retrograde ascent from the duodenum or from portal venous blood. IN MARIO's CASE this happens more easily because he has had a Kasai. As a result, infection ascends into the hepatic ducts, causing serious infection. Increased biliary pressure pushes the infection into the biliary canaliculi, hepatic veins, and perihepatic lymphatics, leading to bacteremia (25-40%). The infection can be suppurative in the biliary tract. The most common organisms cultured in cholangitis are Escherichia coli (39%), Klebsiella (54%) and Enterobacter (34%) species, enterococci (34%), and group D streptococci. This would be what they're watching for in the petrie dishes.

I've also been meaning to give some temp conversion notes for you all, 39.1C is like 102.5, 38C is 100.5 and "normal" 98.6 would be 37C.

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.