HIDA scan scheduled for 4th September

Radiology can't fit us in until the 4th! I guess the good news is that means we are not considered urgent in any way :) Meanwhile, we play the waiting game some more. I emailed the GI and asked him to do another set of blood work orders too so we can check the bilirubin, etc. at the same time. The HIDA scan is a 90min procedure on the 4th (start an IV, inject some radioactive dye, then strapped to a table for 90 min laying still while the machine takes photos), then we do a follow-up session of 30 min (just pictures) on the 5th and meet with the GI on the 7th for the update. So, we will hopefully have a good update in a couple weeks.

Meanwhile, we are going to continue to try having a "normal" summer with the kids before I start work (coincidentally on the 4th). Doc said all our plans/travels were okay. We are going to keep our plans to go camping over Labor Day weekend at Kalaloch, see the ocean, have some fun and I'm taking the kids to AZ to see Michelle, Heather and Emma tmrw for a few days. Wish me luck on the plane with the two of them :) Israel will be working - his last day Friday before he is off for 2 months taking his "paternity leave" when I go back to work.

More in September! Love, Phoebe

August 20th - GI follow-up, bloodwork, etc.

I'll start with the good - Mario weighs just over 6 kilos/13lbs now and is slowly moving from 10th percentile up toward 20's on the growth chart. He continues to smile and laugh, etc. Unfortunately, his bilirubin levels went up again. We had hoped that would continue to get lower (toward zero is our goal) from the 1.9 it was last month...today it was 4.8. This is by no means off the charts, but headed in the wrong direction. Our GI has ordered the HIDA scan and I'm waiting for the radiology folks at the hospital to call me back with the appt schedule. This will help determine how good his bile flow is. I have all of Mario's lab results from the last 3 visits and I'm studying up on all the liver function stuff in the reports, trying to find some numbers that might be pointing in the right direction... wish me luck :) He also increased Mario's dosage of Ursodiol...hopefully this bile acid medication will help things along. The HIDA scan results will determine our next move, but today was the first day that Dr. Christie mentioned meeting with the transplant team at Children's. I KNEW this was a possibility from all the reading I've done (most Kasai kids end up needing a transplant eventually - only a handful have made it to their 20's without) but the reality of having the doctor say it outloud was still hard to hear today. Please continue to send your positive energy and prayers to Mario. Our love...Phoebe and fam

August 16th

We went in to have Mario's blood drawn in preparation for our appointment on Monday with Dr. Christie. I've been reading a lot online and found a great site called liverfamiles.net where families of kids with BA and other liver diseases meet, discuss, share information. I have found this site to be quite helpful, where you can get information from others who have gone through this and understand our situation.

On a lighter note, you can see from the latest photo that Mario is diong just amazing. He is happy and smiles, laughs, etc. He has a period of extreme fusiness every evening around 7-8pm where he seems to be in pain...we think gas, hoping that is all it is. I, of course, will bring this up with the doc on Monday.

So, we'll report back next week. Meanwhile, hope you are all enjoying your summer!

August 9th

Here is a cute photo taken today of Eva reading to her brother. She has been showing LOTS of interest in anatomy and doctor stuff lately, more than before. So, she has a bunch of new kid books about anatomy and the body. The book she is reading in the photo is one of her "BOB" books, all 3 letter words that she is learning to sound out.

Mario is still eating well, doing well. We have an appt to do blood tests again next week and meet with the GI on the 20th. He said we will probably do another HIDA scan to see how well the Kasai is working and give us some idea how long the procedure should last. I've been doing lots of research and have found a number of adults in their late 20's, even 30 years old that have only a Kasai and haven't yet needed a liver transplant. So, we're hopeful that Mario will be in that successful group. Only time will tell!

Love to all, Phoebe